The Lyme Pregnancy Journal

A Short Break

2011-12-07T17:46:00.003-05:00

Hi All,

Taking a quick break so that I can recover, or at least figure out what's going on with my head and ears right now. I've been doing twice daily treatments of Vancomycin, and now I'm experiencing some vision and hearing problems. Whether it's due to ototoxicity or if I'm just having another neuro flare (this time in the head) is a mystery to me and a couple of other doctors.

All I know is that this isn't a mild case of ringing in the ears that can be described as a pesky case of tinnitus. I've had that before in the past, and you just learn to adapt and ignore it. There is a full on whomping helicopter in both of my ears, and even whispers sound like someone is screaming right into my ear canal. There must be an inflamed nerve in there or something--I never knew sound could be so painful. Balance is also way off--if I turn my head too fast, I fall right over. Thank God for Zofran, because, without it, I'd probably be hurling from the spinning sensation.

I know none of this is pregnancy related, but anyone have any experience with symptoms going haywire after starting IV treatment? I'm hesitant to blame everything on a herx, as that's very general and I'm not sure it would have come on this late or lasted this long, however it would be reassuring, as 'herx" sounds better than "damage" any day.

Drinking lots of fluids and infusing bags of saline to help clear my system. Hoping to be back on my feet again soon.

Thanks for your patience with the unreturned emails and infrequent posting. Will be back asap.

Sara

Worst Case Scenario: Treatment After Lyme Pregnancy

2011-11-23T08:38:00.007-05:00

Whenever I get nervous about anything (not just health related), I ask myself, "What's the worse case scenario?"

I had to ask that question many times throughout the course of Lyme pregnancy, and as someone still undergoing some heavy treatment, I don't anticipate stopping anytime soon.

During pregnancy, I worried about not being able to care for my babies. I feared the dreaded relapse, and I didn't even want to think about what would happen if I passed on the disease. Worst case scenario? I'd find help in advance, whether it was family, friends, or if we were desperate, paid. I'd push through another round of treatment with the upper hand, as I've already seen rock bottom and and it's not my first day on the job, and of course, if my babies were ill, we'd treat immediately, let the guilty feelings go, and put all of our efforts into fixing and moving on. Being rational as often as possible is the key to getting through this journey smoothly.

Often times easier said than done. As I'm writing this, I'm tucked away in a bedroom, hooked up to an IV, listening to a chorus of cries and wails coming from the living room. My husband is juggling both unhappy babies, as well as a whimpering dog. Quite the symphony. Undoubtedly, someone has a stinky diaper, someone is hungry, and everyone is overtired. Nothing I can do at the moment, though, and quite frankly, there's little I can do to contribute for the time being. Anxiety and guilt on my part? Oh yeah.

Worst case scenario? Twenty-eight more days of hearing my family soothe the Crying Choir while I blast out this last round of Vancomycin. That's less than a month. Will I be cured? Probably not-- sorry, I'm not optimistic anymore--however, I will feel better than I do now, and even now, I've certainly been much worse off than this.

I was afraid to start this treatment. What if I'm knocked completely on my ass? What if I can't find help and I can't handle everything on my own? What if I'm leaning too hard on family, and they start to resent having to help all the time? It's only been five days of treatment, and so far, all of these things have happened at some point (sooner than I expected!) You know what? We've revised plans, had heart-to-heart talks, taken it day by day, and we've made it so far.

This is all about perspective. Some days, during pregnancy and beyond, will be painful and scary. We are literally fighting to get our lives back. When there are children in the picture, the stakes are higher, and everything seems to matter a million times more. I've noticed that 90% of the time, in retrospect, it's never as bad as I feared it would be in my mind.

For me, relapse has been no picnic, but these symptoms aren't strangers, and I'm doing what I have to so they'll go away again. I have a lot of love and support, especially during the hard times, and despite some discomfort, I'm pretty happy. My kids bring me joy and comfort, and I bring the same to them. Not the kind of life I had in mind for us, but who knows what will happen down the road. Worst case scenario: I stay sick. I wouldn't trade this life for anything, even if it is kind of broken.

Positive Lyme Tests After Pregnancy

2011-11-10T13:53:00.004-05:00

(Photo taken with Instagram: MsBirdieB)

It's been a couple of weeks, and I'm still trying to work out details with doctors and insurance for my last round of IV treatment.

I started questioning the need for IV in the first place after a solid week of improvements--I definitely bounced back from all of the viruses our family passed around, and I've been able to be pretty active with the kids. Definitely not the same sick person I was when I last wrote, however, many annoying symptoms remain, mostly involving joint pain, blurry vision, memory, and vertigo.
I'm sticking with the plan that if insurance covers me, great, and if not, I'll move on to plan B. What's plan B? Who knows--right now every last bit of my energy has gone into plan A. Ha!

I received my test results by phone today.
Initially, Lab Corp gave me a positive IgM band 23.
Igenex provided me with a positive IgM for 41, and an indeterminate for bands 31 and 39
I also got a positive IgG for band 39, 41, and 58

Apparently, I have put all co-infections to bed, because those were negative.

Here is a link that explains what the bands are, in case you're new to IgeneX or western blot testing.

Here's the bottom line:

Could this all be a result of pregnancy? Maybe, maybe not. It's hard to say, because I don't think I was ever in remission before or during both of my pregnancies. I truly believe that no one (ILADS or IDSA followers) knows enough about the disease at this point to pin down where things go wrong or why this disease is so hard to treat. Everyone seems to have a theory, but in reality, most are throwing solutions out there to see what sticks. That's why treatment is so "individualized."

I think a lot of things come into play in my case. Yes, the pregnancy was hard on my body; Pregnancy is hard on a healthy body. No, I wasn't considered "cured" when conceived. I've also dealt with three viral illnesses over the last couple of months, and I've also struggled with finding an antibiotic that works well for me. I've been run down, stressed, and lastly, it took over ten years to get my Lyme diagnosis. Who knows what the hell goes on in a body that's been infected without treatment for so long.

What I do know is that the only way to get through this is to remember that, even though Lyme hurts in every aspect, it does not have to dictate your outlook. Three years ago, I would curl up in a ball and feel sorry for myself on the bad days and come up with all sorts of dismal thoughts about how I would never be able to move on with my life. I didn't realize that as I was thinking these thoughts, my life was moving forward anyway, whether I wanted it to or not.

After a bunch of life changes, financial distress, and two kids later, I am still here. My family is still here, and it's grown. Despite a few hiccups and scares, I am relieved that my children are healthy, and I can't imagine a world without them. So, instead of allowing the fear to keep me from enjoying what I have, I decided to push through and live as if I'm healthy. When I need to rest, I rest. If I need more treatment, I need more treatment. Someday, maybe I won't.

As cliche as it sounds, when you have a chronic illness, you have to take it day by day. Today sucked, and I've spent most of the afternoon curled up in a chair with a baby in one arm, trying to complete this post. But yesterday, we took both kids to the playground in our neighborhood. I photographed the kids, helped Wyatt go down the slide eight million times, and giggled with him as he learned that he could blow the seeds off of a dandelion. It was truly a fun experience that made me appreciate all that I have. My bones ached, but whatever, they would have ached at home, too. My vision was extra blurry, and as I teetered down the street and my husband asked how I was feeling, I responded, "I'm on a boat!" (From the funny SNL video that's too explicit for me to link to here.)

Since I've had kids, I've stopped asking so many of the "why" questions. I'm sick. I'm not sure how long it will last. I will do what I need to do to get better, and I will love my family and have the best time that I can as I go through treatment.

Updates After Pregnancy

2011-10-28T11:03:00.005-04:00

The number one question this past month has been, "How are you feeling?"

We're all terrified of the dreaded relapse or flare after childbirth; some women have a setback and some don't.
Emmett turned three months old yesterday, and up until a couple of weeks ago I was doing great. I recently had a major crash that my doctor feels warrants one final round of IV treatment, but neither of us attribute it to pregnancy or delivery.

I'm not sure if any of you deal with this during cold and flu season (please tell me I'm not the only one this happens to!) but the smallest cold sends my immune system on a rampage, and my Lyme symptoms emerge and flare to the point where I'm stuck in bed or taking a trip to the ER for scary heart rate issues or paralysis. It usually doesn't last long--a week or two--and I forget about it once I'm up and moving around again.

I now officially view children as little germ covered illness spreaders. In the last month Wyatt has shared with us three different viruses, because he insists on touching other sick kids and everything dirty in every public place. The first cold I bounced back from, the second left me with a nasty case of vertigo and nausea, and the third left me wondering if I will ever come back from this. I would definitely consider this a crash: vision so blurry I can't drive (which is not a bad thing, since last week I was pulling out of a parking lot and couldn't figure out which side of the road to drive on), horrible bone, muscle and joint pain, and sounds make my head want to explode. There's a much longer list of symptoms, but you get the idea, plus my energy is limited. I've been writing this post little by little for three days because computer screens are making me extra dizzy.

I was not thrilled with the idea of another eight weeks of IV, but my COBRA runs out at the end of December, and since my deductible was astronomical, I want to take advantage of any treatment I can get while it's covered. If it's covered. If this doesn't work, I'm swearing off antibiotics for a while and will try a more natural approach. In the end, my doctor convinced me that this was the way to go, because I was nowhere near remission territory when I got pregnant, and I ended up having two kids back-to-back. He wants to get a good, strong start to what is essentially the beginning of "real" treatment. It is what it is--no regrets.

Just waiting for current IGenex results to come back. We tried getting a positive through Labcorp, which is not as sensitive, and I only had one active band (23) come back positive this time around (my original IGenex tests came back very positive for Lyme and Bart and questionable for Babesia). If insurance won't cover this, I won't do the IV, plain and simple.

Bottom line: stay the hell away from sick people during the cold months, especially kids! I know, easier said than done.

That said, I have to say that I bounced back very well from pregnancy. An hour after I delivered Emmett, a new nurse came in the room and cheerfully asked if I was going home that day. When I told her I'd just come out of surgery, she thought I was kidding. I felt that much better immediately.

Granted, there's a lot to be said for pain killers, but I continued to improve as I spent more time at home, drug-free. Here are some things I've been able to do since I recovered from surgery (about two weeks after delivery):

-Carry and care for babies all day
-Chores around the house--dishes, vacuuming, straightening, laundry, etc.
-Cooking and baking
-Actively play with Wyatt, which includes chasing, rolling, dragging, and lifting
-Push a stroller around the neighborhood
-Shopping (Oh, how I missed you!)
-Walk the dog around the yard
-Go out for dinner and drinks with my husband
-Spend the day out doing fun things, like going to the flea market, visiting family, going to parks and farms, etc.

Some of the activities required rest the day after, but I can honestly say that until very recently, I've been able to keep up with healthy mommies in the activities department, and I've been having lots of fun.

There are dark days, and there are wonderful days. I choose to focus on the positive, and I believe that I will feel better and be active again soon, regardless of whether I get approved for the IV. I could use some discipline in the diet and taking good care of myself departments, but I'm working on it. How easily we forget that we've been ill once we start feeling better. I'm a work in progress, and there are good days ahead.

Negative Lyme Test

2011-10-07T10:36:00.003-04:00

This is a picture of Emmett's negative IGeneX Western Blot test. Words cannot describe how relieved we are.

I know, testing is unreliable to say the least, but we have decided to simply view this as a blessing, and until we see signs of an unhealthy baby, we will treat both of our children like they are Lyme free.

Thank you all for your love and support during this waiting period.

If you have a few more good wishes to spare, please send some positive energy to my husband, who just lost his job and found a bulls eye rash on his foot all in one week.

We have a family friend who's had so many obstacles in life, she now calls up and just laughs as she tells us about what's falling apart. She once said, "I swear, someday I'm going to write a book. I'm gonna call it, My Fuckin' Book, and anyone who's interested can see how crazy my life is and feel better about theirs!"

That always makes me laugh when I think about it. I'm sure we could all write our own versions after dealing with all of this. I just try to remember to add some humor when things get overwhelming. It really does make a huge difference.

Symptoms of Lyme Disease in Babies

2011-09-30T22:01:00.004-04:00

Our visit with the pediatric Lyme specialist went well--much better than we'd expected.

"Your baby doesn't look at all like a Lyme baby."

Best thing I'd heard in ages, but of course, my immediate response was, "Well, what does a Lyme baby look like?"

Here are a few helpful things I learned during our appointment, including some signs to watch out for after your baby is born (Keep in mind that this is just another opinion among many--each doctor has a different take on the Lyme transmission subject. This particular doctor is considered the best for kids, and I genuinely liked him and what he had to say):

- This LLMD has seen about 400 newborns, half ended up having Lyme, half were fine. Most of the sick babies came from mothers who didn't know they had Lyme during pregnancy and hadn't been treated with antibiotics

-If a mother is on one antibiotic during pregnancy, she has a 50/50 shot of passing on the disease; If she's on two antibiotics throughout, Lyme transmission is pretty much unheard of

-There are other ways to test your baby in addition to cord blood testing. The placenta can be tested, foreskin on a boy, and urine samples

-Positive Lyme test results don't necessarily mean your baby is infected. IGeneX tests look for DNA fragments from the bacteria. That means that at some point during pregnancy, DNA from the bacteria was present in the blood that was shared with the baby. That doesn't mean it was an actual live infection. It could be mom's dead bacteria that was killed by antibiotics, or it may not have even been enough bacteria to make an impact. The test simply shows that something was there. This brings up the question of whether it's worth it to get anything tested at all, since it's impossible to tell what a positive result means.

If I had the opportunity to do it all again, I would still have the boys' cord blood tested, and I'd add in the placenta test (not really interested in urine or foreskin testing). Much of it has to do with the fact that I sleep better at night knowing what we are facing, but now I also know how assertive I have to be with laying the groundwork for treatment based on the initial results. Wyatt's test came back negative, and though I will have him tested once he is a little older, I don't have the sense of urgency that I do with Emmett, who had a positive test. We have actual documentation on file with all doctors, Lyme literate or not, so in case his health declines, or we face other Lyme related problems later, we can trace it back to the beginning. Doctors cover their asses; we're covering ours--I refuse to deal with anyone telling me I'm crazy or paranoid if my kid has strange symptoms five years down the road. I journeyed through that section of hell while trying to get my own diagnosis, and I won't put that on my son.

-If the cord blood or other tests are positive, a Western Blot should be done on the baby to confirm. It's hard to get blood from a newborn (their veins are pretty much nonexistent), and it's even harder to watch your baby in pain. I just kept reminding myself that Emmett wouldn't remember anything from that day, and it was going to help him in the long run

-90% of Lyme babies that come into this doctor's office are what he calls "floppy babies." That have very poor muscle tone and they have no head control. That's the number one sign of Lyme Disease in a baby

-Lyme babies will also have painful joints. How do you tell if a baby has painful joints? When you touch/press the knee, ankle, wrist, etc, the baby will cry out and retract in pain. At the very least he or she will flinch and whimper

Here are a few other symptoms to look out for:

+ Sleep disturbances
+ GI problems / severe colic
+ Poor feeding / failure to thrive
+ Projectile vomiting
+ Weight loss
+ High irritability
+ Sensitivity to light and sound
+ Not wanting to be held
+ Frequent infections (Serious infections. Blocked tear ducts and such don't count)

Some of these things come with the territory when you have a baby, for instance, they wake up a lot. Most parents have an irritable baby at some point, who has a meltdown after a long day of being overstimulated. I think the doctor is talking about severe instances that never let up.

When I expressed concern that Emmett has terrible reflux, hates everything, never sleeps, and can cry like someone's torturing him for six hours at a time, he said that reflux and digestive problems are signs of Lyme, but a doctor can't make a diagnosis based on this alone, as many otherwise healthy babies suffer from painful reflux. Same thing goes for irritability. The idea is to rule out some symptoms--if the irritability and crying subside after reflux treatment starts, you know what the problem was. If the baby is still experiencing may of these symptoms after reflux treatment, he or she should be evaluated again. In Emmett's case, the other symptoms improved by 75% within two weeks of reflux treatment. More serious symptoms like poor strength, growth, and muscle tone/head control should send up a red flag right away.

I'm not going to lie--I'm still scared, and I wonder if I passed this on to my little one. I do feel much better knowing that treatment for him would not be long or intense, and that he can go on to live the normal life of a healthy kid. Blood test results won't be in for another week, and I'll let you all know as soon as I hear something.

As we went to leave, Emmett's doctor smiled at me and said, "Don't you give up either, dear. You're much more fixable than you think!" It's too bad this guy only works with children--I'd be happy to let him take a crack at treating me. I still have hope that in a few years all of this will be a distant memory, and I can tell my kids, "We had a rough stretch when you were babies, but we're all fine and well now."

Someone Fix This Baby!

2011-09-16T21:27:00.004-04:00

It's been nearly a month since we received the positive cord blood results for Emmett. It's taken that long to get phone calls returned, set up appointments, and start to make sense of all of this, as everyone seems to have an opinion, and most of them differ greatly.

Initially, we took Emmett to his regular pediatrician, seeing as she was given a copy of the IgeneX report and was the first one to respond to my inquiries. She surprised me by not treating me like a lunatic for having the tests done in the first place, however, I could tell by her careful wording that she was not into playing Lyme doctor and wanted to pass us off to a "specialist" as quickly as possible. Ultimately, I was grateful for her kindness and willingness to listen, and for her general concern about our baby. I sensed she had a strong opinion in there about the diagnosing and treating of Lyme in children, but instead of taking a side, she honestly and professionally stated that she was not familiar with IgeneX testing and didn't understand what the tests meant. I have no problems with a doctor who says, "I don't really know what to make of this--I've never heard of cord blood testing, so let's have you take Emmett to see the Infectious Disease doctors as the Children's Hospital. At the very least, they can test his blood, and they'll be gentle about it since it's hard to get blood from a newborn, and they're skilled at it."

I cringed when I heard the words "Infectious Disease," and immediately began imagining an appointment filled with ridicule and anger. Not only do ID doctors in our area not believe in congenital transmission, most of them are hostile toward the idea of Chronic Lyme to begin with. However, my husband and I decided that since we were eventually going to see the guru of all pediatric LLMDS, we would also give the ID docs a fair shot and let them test the way they were going to test. We would then make an educated decision based on what we heard from both sides of the fence. That way, in the end, we couldn't say that we didn't explore all options.

It was extremely difficult to get an appointment with the pediatric LLMD. He was not accepting new patients and was booked through December for current patients, but a number of factors played a role in helping us get in this week. First, this doctor is familiar with my LLMD, and I had my LLMD's office call on my behalf to see if we could get in. Second, I was persistent without crossing the line of being annoying (I hope anyway) and was as kind as I could possibly be when I called each week to see if anything had opened up. Third, we were dealing with a newborn, and they take that very seriously. Fourth, we had a positive blood test going into it, so they knew the problem would have to be addressed. FInally, I did a desperate thing: I called them up, cried a lot, and pleaded with the receptionist to help me. Not sure what did it, but we eventually got an appointment. Huge sigh of relief.

Before I get into the appointment part, I should add that we went back to the pediatrician a day before our LLMD visit to talk about getting Emmett on some medication for his terrible reflux. For the record, we have the most miserable baby on the planet. No joke, this kid can cry for five hours straight without a single break, and it kills us to hear him in such misery. Reflux is a sign of Lyme in an infant, and I was scared. Mostly, I wanted to at least get his symptoms in check so the poor thing could sleep and feel some relief. When I told the pediatrician that we were going to see a Lyme specialist the following day, I was disappointed at her reaction, but also relieved that she finally let her real feelings out.

She very passionately stated that she advised against it. "Those doctors are a sham. the only doctors qualified to diagnose and treat Lyme are ID doctors. Anyone else is taking you for a ride. It's your baby, obviously you can do what you want, but I would never to take my own child to one of those doctors. It's a bad idea."

I wanted to tell her that those sham doctors saved my life and got me out of a wheelchair within 3 months after her "qualified" doctors caused me to miss out of all of my twenties, but I knew it wouldn't get me anywhere. Plus, she's just a pediatrician. Her job is to check my kids ears when they hurt, look at rashes, make sure they're growing right, and give vaccines when they're due. I don't expect her to know the ins and outs of Lyme (though all doctors should--but that's a different story). So I looked at her blankly, a little shocked, and curtly said, "OK."

And that was that. We got a referral for a GI specialist (needed to prescribe Prevacid for a baby), and we left. I spent the rest of the day a little offended and pissed off, but realized later that even though what she said was rude, the tone of her voice told me that she was candidly speaking as a mother and not a doctor. She was trained a certain way, and probably had visions of an evil quack doctor pumping my sweet little newborn full of IV antibiotics until he either reached adulthood or started genetically mutating. Her strong reaction actually showed me that she cares about my kids. I know it doesn't come across that way in writing, but take my word for it, she was just trying to look out. Regardless, I was still pretty miffed.

The next day we saw the sham doctor. He did not try to steal my wallet or hang healing crystals from my baby's neck. He didn't even try to get a hair sample for a voodoo doll or jab him with five IV lines at once. In fact, he did the opposite. He told us that our baby did not look like a Lyme baby (more on that and reading test results in the next post), that he would send his blood out for testing, but he appears to be a Lyme free child whose only problem is a whopping case of reflux. No treatment necessary, but if the tests happened to come back positive, he would be given an oral course of antibiotics, but nothing drastic or damaging.

"But my baby cries all the time. He has terrible reflux. His skin is red and itchy. He's had infections!" The more I tried to make a case for Lyme, the more he sounded like a rational person and not a Lyme-obsessed doctor.

"Your baby is in pain because his throat is burning. You need to see that GI specialist. His joints don't hurt, he has some eczema, and sometimes belly buttons get infected. These are all normal baby things that are unrelated to Lyme. The reflux is a symptom in some Lyme babies, but it's also very common in otherwise healthy babies. We can't diagnose Lyme based on that. "

Another sigh of relief.

To add a strange and funny twist, this afternoon we got a call from the children's hospital, reminding us of our upcoming appointment with doctor Henry Feder. Wait a minute. That name sounded familiar. I plugged his name into Google and remembered--he's that steaming pile of excrement that has made it his personal mission in life to discredit LLMDS and tell the world that Chronic Lyme doesn't exist. Why in God's name would we spend our very last bit money to have an arrogant man lecture us about how it's not possible to give a baby Lyme (regardless of how many documented cases there are)? No thanks. That appointment will be canceled first thing Monday morning. Our hearts belong to Dr. Sham.

Cord Blood Positive for Lyme

2011-08-23T11:55:00.005-04:00

When I began this blog at the beginning of 2010, I promised myself that I would write from a positive perspective. I have every intention of keeping that promise, even though I am about to share some sad news:

Yesterday the cord blood sample we sent out to have tested for Emmett came back positive for Lyme.

I don't have many details yet. I called my OB's office yesterday morning to check on the test results, as I hadn't heard anything. One of the nurses returned my call and said, "Yes, we got the results. Something came back positive for Burg-derrr...I'm not sure how to say that..."

"Borrelia Burgdorferi?"

"Yes, that's it!"

My heart sank. In fact, I think it fell right out of me. And before sheer panic set in, I politely thanked her for the information, asked her to fax it to our pediatrician and my Lyme specialist, hung up the phone, looked at my sleeping baby, all curled up and cozy, and couldn't even cry. I was stunned.

Again, I don't have much information yet. For all I know we could be jumping the gun here--maybe she read the results wrong--she clearly wasn't sure about what she was looking at. Maybe the baby is showing my Lyme antibodies, which would actually be a good thing. Maybe I'm in complete denial, which is very possible. Time will tell.

So, it looks as though this blog has taken an interesting turn to say the least. For those of you that have ever wondered what would happen if your baby did test positive for Lyme, stay tuned. I will continue to record our journey so you can read about our successes and failures with the hope that you will be able to get the help you need and avoid the setbacks we come across.

My LLMD is in the process of reviewing the lab results and will call us after he consults with the most respected and well known pediatric Lyme specialist in our area. That makes me feel a lot better. If we did catch a real case of Lyme, at least we caught it early.

I keep reminding myself that even if this is true, the baby is not in the severe amounts of pain that I've endured. I always forget that I've had twelve years of infection causing damage to my system. We are blessed in the sense that we caught this right away and can take care of it before it becomes a larger problem later in life.

We have an appointment with our pediatrician tomorrow. This could prove to be beneficial or a huge mistake--I'm thinking mistake, but I want to keep everyone involved with our children's health in the loop. Our ped doesn't believe in congenital Lyme transmission (she's not hostile about her opinion and she's great to our children), and I'm wondering what she will do when she sees a positive test result.

As much as I love Lyme doctors, I am a little nervous about having them jump right in and treat our baby, as they tend to be heavy-handed with the antibiotics when treating adults, and I don't want to harm or overmedicate our infant. We figured that the pediatrician will take a conservative approach, the Lyme doctor will take a more aggressive approach, and my husband and I can sort through it all and hopefully find a happy place in between. We are in extremely unfamiliar territory, so we want every bit of information possible, from both sides of the fence.

Our LLMD's office called last night and told us not to panic and that everything will be fine. Emmett has no signs of harm or abnormalities and that we wouldn't even be able to start treatment until he is three months old since his system is so new and fragile.

Emmett does seem strong and very alert, though he has not been as healthy as our first. His umbilical cord stump got infected underneath, and the first week he was home, he had to go to the E.R. for a staph infection. Last week his eyes got infected due to blocked tear ducts. Could be completely coincidental--I just get nervous when frequent infections are present.

For those of you now questioning what I've been writing about all along, I can't say I blame you. I'm not sure how this happened or if these results are even anything serious yet. All I know is that we went by the book, so to speak. We did everything we were told, and I have shared everything that some of the best LLMDs in the northeast have told us:

That transmission usually only happens in untreated mothers.
That being on antibiotics throughout pregnancy will protect the baby.
That even though I may have been feeling like crap throughout the pregnancy, my baby was not being affected

I'm really hoping that this is just a misread of the test results or that there is some explanation for a positive result, because it is so rare. I truly believe that.

There are so many happy, healthy babies out there born to Lyme Mamas. I've talked with these women. I know they exist. Our first born is completely fine for what it's worth.

I would give just about anything to be able to tell the world that my newest son is one of these healthy babies. We will do whatever it takes to get him there.

That said, any moms out there have any experience with a positive IGeneX cord blood test? I recall a comment or two a while back regarding the topic and there was question as to whether it was an active infection vs. presence of mom's antibodies. To the moms that posted, if you're still reading this, will you please let us know how everything turned out for you?

Any info is greatly appreciated.

Our Healthy Baby Boy is Here!

2011-07-31T21:57:00.005-04:00

We are happy to announce the arrival of our son, Emmett Michael.
Born July 28, 2011 at 8:04 am, 6 lbs. 14 oz., 19.5 inches.

We had zero complications. Emmett's birth was quick and, dare I say, easy. So far he is strong and as healthy as can be. You'd never guess this little guy came from a Lyme Mama!

Thank you all so much for your support, prayers, and well wishes. I have many things to share in the near future, but for now we're taking some time to relax and enjoy the new addition to our family.

Be back soon!

XO
Sara

Wake Me On Thursday

2011-07-24T14:23:00.004-04:00

I usually have a rule about not posting any picture that makes me look horrendous or ill, but I've reached a new level of crappy today, and it wouldn't be fair to readers if I didn't tell the truth about my nine-month journey at all times. This is what the last days of my Lyme pregnancy have been looking like. Even the pound of makeup I'm wearing under my eyes can't cover these circles! Someone please put me out and wake me up on Thursday morning.

Things Are Looking Brighter

2011-07-23T14:49:00.003-04:00

My Ob/Gyn called yesterday to make sure I hadn't jumped off a cliff, but also to tell me that my c-section was rescheduled to this coming Thursday, the 28th. Five days away. Not too bad at all, considering when I heard the news that we had to postpone the birth, I imagined it would be a much longer wait.

Because we were so close to lung maturity to begin with, and 37 weeks is considered full term, I will not have to have another amnio beforehand. (YES!) It's a done deal. I go in at 6am on Thursday, and we head right to Labor and Delivery.

In the meantime, I've slept a total of three hours each night for the past two nights. Everything on my body itches from the candida, and forgive the TMI, but I pee every hour and a half. Yay pregnancy and antibiotics.

I'm not sure if that's what's making it even tougher this week, or if the emotional stress has kicked some neuro stuff up--it could also be the physical stress of making the trip to the hospital and having the amnio... personally, I'd like to blame the Ambien I took for the first time the other night. That thing did horrible things to me and I haven't felt right (I'm really "fuzzy") in the head since--whatever it was, these last five days are not going to be easy. Pain level 9--feeling like I'm in a bug zapper again. It's OK now, though, because I'm in better spirits about it, and there is a real end in sight.

My husband told work he wasn't coming in yesterday, even though Friday is the busiest day of the week (that has NEVER happened!). We spent a very quiet day with our son and realized that it was better in the long run that the two brothers would not share a birthday. Having time together on Wyatt's special day, just the three of us, doing nothing but sitting around the house and playing was just what we needed. Neither of us are in the best mood, and focusing on our little guy without any pressure of entertaining or checking off to-do lists was amazing. Surprisingly, some people have rudely expressed disappointment that there was no big to-do or sharing of a birthday bash, but frankly, we don't give a flying you-know-what. Can't please everyone, right?

Wyatt had his first piece of cake, and he loved it. My parents showed up later that evening, as expected, for their normal weekend visit, gave the little guy a couple of presents, took some pictures, and that was that. Perfect.

The clock is ticking extra slowly, but we'll make the best of it. We'll meet our new little boy, and I'll get back on some better meds in no time. I may even stop twitching by the time I leave the hospital. Hey, you never know...

Wyatt Turns One!

2011-07-22T08:45:00.007-04:00

Our little boy is a year old today! Happy birthday to Wyatt, the light of my life and reason I will continue to fight forever to beat this. As you can see, he's a happy, healthy little man. For this, I'm beyond grateful.

Expectations and Disappointment

2011-07-21T19:43:00.004-04:00

Well, we had the amnio bright and early this morning. It was uncomfortable, but that's to be expected when someone sticks a long, thick needle into your belly and wiggles it around for a few minutes. Everyone expected great results--so great that we pre-registered, had all of my blood samples drawn in advance, went over the schedule, and the nurses even sent in breakfast for me so I could have a nice meal, since I wouldn't get to have one tomorrow morning.

My husband and I knew better and looked at each other with worry. Then we joked with the nurses that this was way too nice and easy.

And it was.

After waiting all day by the phone for test results, we were finally faced with a difficult (yet not difficult) decision. The numbers for full lung development were to read 2.4 or greater. Ours came back just above a 2.3, which made it right on the line of acceptable. We could still go on with the section tomorrow if we wanted to, but we weren't 100% in the clear.

I was getting mixed signals from the doctor, who felt terrible about having to deliver the news. First, she said that some doctors are trying to do away with amnios as accurate lung tests, because they are unreliable and give false negatives and positives all the time. Second, she didn't expect any problems with our baby, and she consulted the high risk specialists, who agreed that my pain levels and lack of physical function right now would qualify me as approved to deliver. It has gotten that bad.

But worst case scenario, the baby would need an oxygen tube, and essentially that would be my fault. I get sad when I see pictures of little babies with tubes up their noses. Even worse is when they need even more respiratory assistance, and the ultimate deciding factor for us was that our hospital wouldn't be able to provide that, so if the 10 percent chance we had for some really bad lungs occurred, our baby would have to be transported to another hospital to get help. All because I couldn't suck up another week of bed rest and neuro pain.

It was a no-brainer for us, but I have to admit that telling the doctor we would wait it out was harder than I expected. You know how when you're in labor, they tell you to pick a focal point and put all of your energy into that one thing to get you through the tough contractions? Lyme disease is a f*%&$*# never-ending contraction, and July 22nd was my focal point. These last weeks have been horrendous, especially this past week when my help canceled last minute and having my husband working extra hours. But I don't need to get further into symptom woes--you've been down that road. For me right now, it's just magnified and very intense. I chalk most of that up to stress and anxiety, but who really knows why the pain is picking up?

So I sobbed for two hours straight. I couldn't even talk about it with my husband. Honestly, I felt morbid. Not because I have to wait a week. That's fine, my baby needs that. I think 36 weeks of focusing, being optimistic, and keeping a sense of humor backfired. It's hard work to not get depressed about Lyme Disease, and sometimes the blow is too hard to keep positive. This was one of those hard blows, and I finally ended up having a meltdown. Actually, mini-meltdowns keep popping up, so I'm not even sure I'm done with them yet.

Over the last couple of hours, we've had to tell the family the news, have my out-of-state inlaws cancel hotel reservations and reschedule the trip, make new doctors appointments, have my parents reschedule vacation time that was hard to take in the first place, try to get my nanny to cut her personal vacation time short because I need her after all, reschedule the photographer who offered to take newborn photos for free, the list goes on. On top of that, I have a raging systemic candida infection that is wreaking havoc on all areas of my body. And I mean all. I can't treat it until I deliver. But all of this is trivial in the long run.

I think the worst part is the overall disappointment of having to go through all of this in the first place. With Lyme we learn to get rid of all expectations because we never know what we'll get on a day-to-day basis. I also try to take a Buddhist approach to all things, however, I was unable to avoid expectations and suffering this time around. Why? Because I really freaking hurt. I'm tired. I feel like a shitty mother because I can barely chase after my first baby and now I'm struggling with a second on the way. I've spent the last week crying tears of frustration because I am weak, exhausted, and basically stuck in bed, when all I want to do is enjoy the experience of pregnancy and birth and not worry about my health or my children's.

This post was not intended to be whiny or self-indulgent, though I realize it kind of turned out that way. I just want to be truthful and share the dark times as well. Because if you're symptomatic, there will be dark days. And we will all get through them--it just doesn't feel that way when you're deep in it.

Tonight I'm grieving the loss of my old self. Well, a healthier self, anyway. One that would not have to put all of her focus and energy on a specific date in order to survive the day-to-day crap without losing hope. I'm over this Lyme nonsense. I hate even typing the word.

They gave me an Ambien at the hospital to take tonight so that I could be well rested for surgery tomorrow. I'm taking it anyway to catch up on some rest, and hopefully I'll wake up in better spirits. I have to. It's my son's first birthday, and it wouldn't be fair to feel so down on such a wonderful day.

I'll check in again when I find out when I'm really and truly going to have a baby.

48 Hours Away!

2011-07-20T14:24:00.003-04:00

*Our family of three is about to become four!

I had my last appointment with my ObGyn yesterday! Each time I go in there, I'm treated with such kindness and sympathy that it actually borders on being uncomfortable. Even if I feel terrible like I did yesterday, I try to smile and joke, mostly because there's only so much complaining a person can do--they've heard it all, and that baby isn't going anywhere until Friday morning, no matter what I say.

Conversations always start like this:

Doctor: So how are you feeling now? Counting down the months/days/hours?

Me: I've been better, but I've been worse--but I will offer you a million dollars if you take this baby out of me right now, or maybe on your lunch break? We can do it in the parking lot. I don't even care!

But now I'm counting down the final hours! 48 give or take, but that's assuming my amnio results come back clear for full lung development.

The test is at seven tomorrow morning, and I should know if we're having a baby by noon. If that's the case, I'll get my stuff together, enjoy the rest of the day snuggling as much as I can with my son, and then I leave for the hospital Friday around 5:30 am.

I'm not going to lie. I'm scared of many things right now--

Understandable anxiety about how the amnio will go tomorrow--what if his lungs aren't ready? I've mentally prepared myself for this early delivery, because it's the only thing that's gotten me through this last extra rough month of pregnancy. The nerve pain is driving me nuts. I think the disappointment of having to wait longer will kill me!

What if something goes wrong during delivery?

What if I didn't take enough antibiotics during pregnancy and I have a Lyme baby?

What if I took too many drugs during pregnancy and I have a baby with problems?

What if, what if, what if. That is a horrible way to think, because a person creates unnecessary anxiety--nothing has actually gone wrong yet, and it most likely won't. And if it does, we'll deal with it as it comes. We're not given anything we can't handle or get through, right?

So, one thing at a time. I keep telling myself that, anyway. Amnio in the morning, followed by a nice breakfast at the diner (that's what we did last time, so now it will be a tradition.) I can handle that.

More updates as the story unfolds!

How to Help During Lyme Pregnancy

2011-07-11T20:25:00.004-04:00

I've been so lucky to have recently had offers from family and friends to help out before, during and after our new baby is born. I had the same offers last time around and rarely took anyone up on them, because I was afraid of asking too much of people and I just wanted to be polite. I like to think that I can do everything myself, and I feel guilty asking others to do things for me. I quickly learned that politeness can result in total exhaustion and a much longer recovery time. I've given it much thought, and here's a list of things I've come up with that might help out the Lyme mamas out there:

BEFORE

1. If she has other children, offer to babysit while she goes for check-ups, or maybe even bring her to one of her many doctors appointments. Lymies often have triple the doctors appointments of an average mom, and it can be hectic trying to arrange childcare during exams or even drive if she's having a sick day

2. Give her a call to see how she's feeling. You'll never get the full story via email or Facebook, and though it's easier to send a note, it's just not as personal. A quick call from a friend will really make her feel like she has a good support system. (Even on days when I feel grumpy and antisocial, and I debate whether to throw the cell out the window, I never regret picking up and spending 20 minutes talking to the person who called me.)

3. If you live close and are out running errands, ask if she needs anything. There were many times I was craving something specific and was missing an ingredient or two, or sometimes I'd realize too late that I was all out of dog food. Little outings most don't think twice about can sometimes use up a whole day's worth of energy for someone with an illness. A little saved energy here and there makes a world of difference.

4. Offer to come over and entertain her young kids for an hour or so, so that she can rest, or even hang out with all of you without having to get up and chase after the little ones when they get rambunctious. (I'm the best mom in the world when I'm interacting from the couch and someone else gets up to retrieve my one-year-old as he takes off like a lightning bolt across the house and out of eyesight.)

5. Make her laugh. She needs it.

6. Bring over a meal. I thought this was only standard for moms just returning from the hospital, but I swear, the day my neighbor came over with a delicious cooked breakfast (I hadn't been motivated enough to scrounge up more than crackers or cereal in months), my six-month pregnant belly was the happiest it's ever been, and my neighbor's kindness made my entire day wonderful.

7. Don't expect too much from a Lyme mom or Lyme mom to be. It's not that she doesn't want to return your email right away, or that she's purposely canceled plans the last five times in a row. It's really hard for us to predict how each day is going to unfold, and often times it's hard to keep up with the daily pace of active people, especially while pregnant. We try really hard to do everything we can, but sometimes we fall short.

AT THE HOSPITAL

1. Wait for an invitation before you drop in for a visit. There's no telling whether the couple views the hospital as a private time to bond with each other and baby, whether they're getting bombarded with guests already, or, here's the big one--how mom is feeling. My son was born in the evening, and I felt so horrible after 24 hours of labor and a c-section, that I held him for maybe thirty minutes before I was completely out for the night. I can't imagine anyone but my husband being there as I lay there in pain, crying to the nurses for a percocet, still loopy from the drugs already in my system. By all means, let the parents know you'd love to visit, but let them tell you the appropriate time if they're interested in visitors. (My inlaws were so good about this last time--I'm still grateful for their consideration. Even this time, my mother-in-law emailed to tell me that even though they will be in town beforehand, they'll do their own thing until I'm coherent enough to enjoy company and they'll just wait to get the call. So sweet.)

2. When you visit, please hold off on the perfume, hairspray or other chemicals. A.) As it is, many Lymies are extra sensitive to smells, sounds, and tastes B.) There's nothing worse for a mom than seeing her brand spanking new baby get coated with flowery odors, or even worse, cigarette smoke. Washing hands is not enough. Make sure you're clean and as smell free as possible.
When Wyatt was born, I didn't have the guts to reprimand the nurse doused in Clinique Happy. She should have known better, but she also dispensed my pain meds, so I wasn't getting on her bad side! However, my husband got an earful when he and a buddy went outside and had a celebratory smoke and trailed it back into the hospital room. Both boys were banished to the bathroom to wash up before they went near the baby. It's uncomfortable all around to have to tell someone they reek. Just be mindful.

3. Tell the mom she looks awesome and did a great job, even if you're lying! ;)

4. Ask if she needs anything from the outside world. (I'm already craving the Starbucks iced coffee someone is going to get stuck bringing me!)

5. Don't be offended if mom isn't up for long visits. Some Lyme moms give birth and feel great, and others struggle with symptoms right after delivery. It's really based on the individual. We know you're there to see that cute little new bundle, but be respectful if Mama needs a nap. (I was more social than I thought I'd be and really enjoyed company. I'm also lucky enough to have a family that knows 5-hour marathon visits would wear us out.

AFTER

1. If you are invited over to visit and want to bring a gift, supplies are the best. Diapers, formula (if not breast feeding, of course), wipes, bottle brushes, etc. Not that stuffed animals aren't cute and appreciated--it's just that many of us struggle financially, and the everyday stuff helps more than you'll ever know. (When someone hands me a box of diapers, my heart flutters with joy. A can of formula is like gold. Seriously.)

2. Offer to watch the baby so one or both parents can take a nap. Overnights are a little personal, but offering an hour or two during the day is enough to help recharge a parents' battery for a good while. I say parents, because dad or partner is going to be up all night as well in the beginning, especially if mom is extra fatigued and struggling with Lyme stuff

3. Dinner is always appreciated. It's a great old tradition, and it's really just a nice thing to do

4. If you want to help with household chores, don't ask, just do it. No one wants to say, "Sure, wash my dishes and take out the trash! And you can wipe down my counters and bathroom sink, too!" It's embarrassing, and that whole politeness thing gets in the way. It's not that moms don't want the help--on the contrary--it's needed and genuinely appreciated. It's just hard to be put on the spot and rattle off a list of things we want done. Better to just get in there and help, because many of us will say, "Oh no, that's OK," when we really mean, "For the love of God, it looks like a bomb exploded in my kitchen and I need some help!"

How about you? Any advice for people who want to help out a mom struggling with Lyme? Anyone do something special/memorable for you during your recovery?

The Countdown Has Begun

2011-06-30T11:19:00.003-04:00

Here's a progress update for those of you interested in how you might feel going through the final weeks of pregnancy.

Due to the neuro stuff I've been griping about for the past few months, my OBGYN gave final approval for an early C-section. The big day is scheduled for July 22nd (just three weeks from now!), which will put me at 36 weeks. I will have an amnio done the day before to make sure his lungs are developed (of course we won't do anything if there's an issue in that department), and if all goes well, our little guy will greet the world early the following morning. July 22nd also happens to be the same day my son, Wyatt, was born. Definitely not intentional, but our guys will share a birthday. We're hoping they'll think it's cool someday if we spin it the right way.

Wyatt was also born at 36 weeks, and contrary to what the very opinionated anti-c-section-or-any-kind-of-birth-earlier-than-40-or-more-weeks mothers on many baby forums have to say, 36 weeks is a fine time to pop out a kid if medically necessary. Wyatt was healthy as a horse and huge. 7 pounds, 11 oz at 36 weeks huge. He breathed just fine and sucked down a 2 oz bottle within minutes of his birth. He has also been on or ahead of schedule when meeting his milestones. We never even thought of him as an early bird.

I also don't want to tempt the Universe, and I do realize that, like pregnancies, all babies are different, and baby number two's development may be lagging compared to his brother's. That's why we're doing the amnio. Worst case scenario, he briefly gets some air when he comes out. When I expressed my concerns about early delivery, both of the OBGYNs I see said that 36 weeks is definitely in the safe zone, and there are kids born naturally at 40 weeks that need assistance; Some come out at 34 weeks screaming their heads off. You just never know.

We're not delivering early for the baby's sake. He is fine and happy in there, and has no idea that his mom wants to jump off the roof sometimes after a long day of twitching and feeling like she's a bug being electrocuted in a zapper. Bottom line is that the pain has gone on long enough, and I need to get back on some antibiotics that will treat an active case of Bartonella more effectively. It's getting harder and harder to get through the day, both physically and mentally The quicker I start feeling better, the faster I can start being a better mom. Within a couple of months after Wyatt was born, I was already seeing a difference in my health. More energy, far less pain, and my twitching only happened occasionally, mostly when I was overtired. I'm hoping the same will happen this time around.

I want to point out that a cesarian is not the only option for delivery during Lyme pregnancy. This was actually a personal choice I made (and the doctor agreed it was the best route for me.) My first labor lasted nearly 24 hours, and I made no progress. The toll it took on my already broken body was astounding. Once I finally went in for the section, we were all like, "Duh--why didn't we do this earlier?!) Recovery time afterwards is definitely longer, but I found that the section did not effect my Lyme symptoms either way. I was used to the down time of healing anyway.

There have been many ups and downs to this pregnancy. Thank God for the ups, because they always came at a time when I really needed them and gave me hope that I could get through this. Much like last time, the end of pregnancy has been mostly on the down side, however, one out of every three weeks, I'll have a surge of energy, I'm able to join the world and do normal mom things like take my son to the park next door, play with him in his kiddie pool, and sometimes do the cleaning and nesting around the house that comes with a normal pregnancy. Then I crash for a while, but it's worth it.

I nap a lot, I'm crabby as hell, full of anxiety, retaining massive amounts of water, and I cry at just about everything, but I think that can be said for most pregnant women. Overall, these final weeks could be better, and I'm looking forward to having my own body back and working on healing, but I realize that it could be a whole lot worse. Or maybe I'm just painting this nicely because I've been through this before, and I know the happiness that's waiting right around the corner (I maintain that our mental state and perception of the world makes or breaks our physical health).

Right now we're just looking forward to meeting our son, hoping that he's healthy and that the big day goes smoothly. And I don't care one bit it if contradicts the recommendations for Lyme--once I have this baby and I'm off the pain meds they give me, I'm having a big fat margarita, maybe even two!

The Financial Burden of Lyme Pregnancy

2011-06-09T16:12:00.006-04:00

I've gone back and forth over whether this topic is worthy of discussing, mostly because the information I share has always been kind of personal and there has to be a line drawn somewhere--but I feel like since I've been pretty candid from day one, it's only right that I share everything I've learned about the effects of a Lyme pregnancy and beyond (the more prepared we are the better, right?), and that includes sometimes having to make sacrifices that we hadn't expected. More specifically, financial sacrifices.

I've yet to meet a person who hasn't believed that the financial strain caused by Lyme Disease is nearly as bad as the disease itself. Maybe it's just me, but I don't hear anyone saying,"Insurance denied me again? No worries--I'm rolling in extra cash and my credit is stellar, so these big out-of-pocket bills mean nothing to me."

I'm not unlike many people dealing with this disease--if you add up twelve years worth of medical expenses (the majority of which were accrued while trying to find out what the hell was wrong with me), the cost easily exceeds 100k.

I haven't had the heart or stomach to add up the cost since my diagnosis, but I know that currently it's $450 each time I see my LLMD, double that if I'm seeing two doctors. Insurance is another $400 a month and doesn't cover my Lyme visits. Add in monthly meds, tests, supplements, $275 a week for childcare on days I'm stuck in bed, high emergency room co-pays (luckily there haven't been many), the cost of extra ultrasounds to monitor the baby (the last high risk doctor bill came to $675 for an ultrasound), the list goes on. I will admit, I have the world's worst insurance company and will drop them and find a new one as soon as this baby is delivered, but still, Lyme life ain't cheap.

Here's where factoring in finances causes mixed emotions: To me, there are two kinds of people--the kind that feel like they need to own a home, be settled, and be very financially secure before having any kids. They are the ducks in a row kind of people. Then there are the people who feel like no matter what, they will find a way to make ends meet and provide for their children, and that waiting for home ownership or a debt-free existence doesn't make or break the decision to have a family.

My husband and I fall into the second category, so take this however you see fit.

Since becoming pregnant (and parents) we struggle even more financially. Never to a point where we feel like we can't take care of our kids, but we were taken off guard when it came to the sacrifices we would have to make in order to make sure our family was comfortable.

For example, here are some of the changes we've made to get through two Lyme pregnancies and parenthood:

-My husband has to work extra long hours (70+) a week to maintain a job that pays well enough to support us (he'd love to switch jobs, but the money is too good there, and we need the income since I can't work)

-Since I'm not well enough now to be by myself all day and night with a baby, we had to hire a nanny. We can only afford the nanny 3 days a week, as childcare is expensive

-Due to the extra bills of a pregnancy on top of Lyme, we had to choose whether it was beneficial to just scrape by without an extra dollar to our name each month, or give up some luxuries.
By luxuries, I mean our condo. When we found out we were expecting again, we moved into my parents' home to make sure we had enough money to stay afloat--we just didn't know what we were going to get hit with this time around. They work and live out of town during the week, which gives us most of our independence still, and they were gracious enough to let us use what would have been rent money for my medical and childcare expenses.

-On the weekends, my parents come to the house and help take care of the baby while I rest. When they show up with groceries, formula, or diapers, I am embarrassed, but I don't decline them because we need all the help we can get. In return, we do what we can to keep the house maintained and earn our keep there

-We've sold most of our household items and furniture on craigslist to eliminate the need for storage and help pay for the $7,000 hospital bill we're about to receive once the baby is born. When we are ready to move (which won't be for a good while), we will start from scratch, which is something we see as a big positive for us psychologically (who doesn't like a fresh start? Honestly, we feel like we need one after this Lyme ordeal.)

Just so you have a basic idea of how we're used to living, I can say that we've always been somewhere on the lower end of comfortable. My husband earns a good salary (though not 6 figures), one many would hope for, though we are not well off either, especially since I'm not working. We've been able to keep up with our payments, credit card bills, and a frighteningly large school loan that my husband will regret taking until his last living day. We have enough to eat, our kids have enough clothes and toys, and we've always found a way to make ends meet or purchase something if we needed to. Lyme pregnancy is the one thing that's recently made us say, "Maybe we should put some groceries back so we can get diapers AND formula this week."

I'll just add that we are minimalists by nature. We're actually not all that into gadgets, technology, "stuff," clothing, fancy cars, and for the love of god, we hate clutter and things we don't absolutely need (my husband is much better at determining what a real need is, but I try...hehehe). We prefer to rent, and if we could get by in the sticks here without a car, we would use public transportation for everything. That said, the scraping by thing isn't a big deal to us, because we don't feel like we're missing out on material things--mostly because we just don't care enough about them.

We do, however, get pissed that all of our cash is used up paying medical bills that should never have needed to happen in the first place. But that's the life of a Lymie, right? At the risk of sounding like a broken record, I hit the lottery when I met my husband. He is kind, patient, generous, and he would do anything in his power to support me and get me better. As much as I feel guilty about our financial struggles, he continues to do what it takes to get us through it all.

He agrees that we have no regrets starting a family before we were financially "secure." In fact, it's the opposite. It's been a financial struggle, but our lives are so much better as parents. Day to day living has never been more difficult, but in the end, we've never been happier--as crazy as that sounds, it's true.

Ultimately, I'd say that while a Lyme pregnancy is tough on the purse, it hasn't stopped us from, so far, raising our boy well in a home full of love and happiness. If you can prioritize and reconsider what you actually need in life (which Lyme has forced many of us to do already anyway) you'll probably find that starting a family is well worth the sacrifices made.

Just be prepared for some added expenses. I knew they would be there--I just didn't realize how much these little babies actually cost! They're lucky they're cute!

Antibiotics Throughout Pregnancy?

2011-06-02T12:24:00.005-04:00

I apologize for the lack of recent updates and info. I had a few ups and downs last month, but ultimately crashed for a while. Stabilizing now, and I attribute that to breaking down and hiring full time help around the house. I'm now able to spend lots of time either napping (which greatly eases the neuro pain) or at least lying on the couch while Wyatt and the nanny play, without having to get up and chase him around.

When I last wrote, I had experimented with taking a quick break from antibiotics. I was surprised to find that I didn't feel as bad when I was off of the Zithromax, and I wondered if I was feeling so crummy because of too many antibiotics for too long.

As a quick side note, I went back to my original LLMD, as I felt I needed more of a scientific approach than the new doc could offer. (Garlic and meditation are great, but don't bring me any comfort when I'm questioning whether I just had a seizure or if I'm going to croak...)

Anyway, original LLMD helped shed some light on my situation, and I think some of what he said might be helpful to those of you questioning whether antibiotics are the right course of action during pregnancy. Here are his thoughts paraphrased:

1.) When a patient is not pregnant, he agrees wholeheartedly that there is a wall that can be hit with antibiotics. Either the body says, "Enough, please!" or you've been undergoing treatment for years with minimal results, no matter what you try. Some people feel "toxic" from all of the drugs, and in most cases, he would immediately stop antibiotics for a while to let the body take a rest and balance out a little. It makes sense that the body would need a break after working to hard to kill spirochetes, eliminate them properly, and restore itself.

2.) After admitting to him that I had taken a brief antibiotics vacation, he said it made sense that I'd want to do that, and again, If I wasn't pregnant, he would support that decision and pick up again after I'd cleared out my system for a bit.

3.) There are two reasons for his wanting me to stick with the Zithromax:

a.) Pregnancy is not a time to aggressively treat or blast away at spirochetes, but you want to take just enough to maintain your current level of "health" and protect the baby. Protecting the baby is number one when considering antibiotics treatment. Assuming there are no signs of fetal distress or issues exclusive to pregnancy, your baby is not feeling a single bit of the nerve pain (or insert your own bad symptoms here) that you are experiencing. He or she is obliviously floating around and developing in a nice, cozy swimming pool while you feel like crap and count down the days until pregnancy is over (my words here). As far as overloading your body with hardcore antibiotics, that shouldn't happen at all. When I asked if I should be taking more than 500 mg of Zithromax a day, he said no, let's continue to be conservative.

b.) (*I want you to know that I trust and believe in this doctor fully, and this is what made me go home and take those lovely pink pills:) Years ago, his own grandson contracted Lyme congenitally. In the first few weeks of the baby's life, my doctor pointed out to his son that he believed the baby was showing signs of Lyme. The son blew him off, arguing that because his dad was a Lyme doctor, he was obsessed and paranoid and Lyme was all he could see in anyone. The son didn't believe the baby had Lyme. Within three months, the baby was taken to Dr. J in New Haven and tested positive for Lyme. The baby turned out okay, but had to be on antibiotics for a year. Mom hadn't taken her antibiotics during pregnancy.

Normally, I'd be skeptical of a story that reads like an over-the-top cautionary tale, but again, this is a very reputable doctor, he has no hidden agenda and doesn't gain a thing from keeping me on antibiotics, and also, he was serious as a heart attack when he told the story. His conclusion: You can stop taking the Zithromax for the rest of the pregnancy if you want to feel better, but I have a feeling you're going to beat yourself up and feel a lot worse if you end up having to treat an infant for Lyme because you slacked off during the last month. Can't argue that.

And after all that occurred, we found out some interesting information: My Lyme is actually in remission. (I'd heard that from the other doctor I was seeing, but wasn't sure I believed him.) Tests for Bartonella, however, show that I have a raging active infection. Looking at a picture of my blood and seeing tiny little "bugs" scattered throughout it was slightly comforting (weird, I know) because at least there's a visible reason for all of this recent pain. Prior to pregnancy, I hadn't really tackled the Bart very hard, because the Lyme was worse at the time.

Zithromax is not the very best drug for Bartonella, but it is an effective one, which could explain my feeling worse on Zithromax-- it's working, and there's die-off.

My first question was, "Am I going to pass this on to the baby?!" The doctor said that he doesn't believe Bartonella is as easily transmitted (if at all) as Lyme. He gave me a long reason for it that described the differences in how the bacteria travel through the body and where it's stored, but honestly, it went over my head and I forget the parts that made sense. Bottom line is that Bartonella transmission is low on the list of things to worry about in terms of congenital transmission, and in theory, even if it were a problem, antibiotics will protect the baby the same way he or she is protected from Lyme.

I know this is a lot for one entry, but I figured I owed you all an update and some new info.

As of now, I am confident that staying on the Zithromax is the best option for me, even though I'm not feeling so great. I want to keep the Bart in check as much as I can. After I deliver, I plan to start a brief course of Levaquin (which is good for Bart and has helped me in the past) followed by a longer course of Minocycline, maybe both together. We'll see where we go and what to add from there. In the meantime, I'm in the horizontal position as much as possible for the next 7 weeks until I meet my little guy!

Feeling exhausted and basically useless around the house, but finally more optimistic now that I have some answers and a plan of attack for the future.

Anyone out there have any Bartonella experiences they'd like to share?

Are You Ready for a Baby?

2011-05-29T21:42:00.006-04:00

I always love hearing from readers, especially when they tell me that they were scared to even think about starting a family, and now they have hope that it can be done. It wasn't my initial plan to start a "You can do it!" blog--in the beginning I was more interested in recording my Lyme pregnancy experience because a.) I was surprised many other people hadn't done this yet, and b.) I had no clue what pregnancy was going to be like as a Lymie not yet in remission, and writing about it helped me work through my fears.

Between a miscarriage and two successful (knock on wood) pregnancies, I've been carrying babies for over two years straight, with only a three month break after the birth of my first son, Wyatt. I was still wearing maternity pants and trying to make sense of what it meant to be a mother.

Some people just love being pregnant. Healthy or unhealthy, I can honestly say that I am NOT one of those glowing, happy pregnant women. To me, feeling nauseated and puking all the time sucks. Looking and feeling like a beached whale sucks. Feet swelling to elephant-man-like proportions sucks. Of course, it's temporary and the end product has you looking at your deflated, mushy belly, not even recognizing yourself but thinking, "I would totally do this all over again."

The feeling of love you experience the first time you hear your child cry, or when the doctor places that little sobbing bundle on your chest and you look at your partner to share the indescribable moment that will make your connection to each other deeper than it's ever been--it's enough to make you temporarily forget Lyme Disease even exists. In a weird way, I can see why the Duggar wife on reality TV keeps popping out kids like she's a baby-making factory. That intense feeling of love, newness, and purpose is addictive.

But as you've probably guessed and might have read, the Lyme parenthood experience is not all puppies and roses. Coming from a new angle where I am both pregnant and caring for a baby, I can say from experience that there are days you will wonder if a.) you are nuts for even embarking on this journey (though you will never regret it), b.) you're going to make it through another day, c.) life will ever get easier--even just a little--because right now it's too hard. I imagine that if you take out the Lyme Disease aspect of it, many first time parents ask themselves the same questions. The only way I can describe it is to take these natural emotions and struggles, intensify them, and then add in some struggles due to physical discomfort.

Keep in mind this is coming from someone who was not in remission prior to pregnancy, with some pretty serious neuro stuff happening. Also keep in mind that when I called and asked my doctor why I feel like absolute death right now, his response was that in his years of Lyme treatment, he hasn't seen such severe Lyme reactions during a pregnancy. Bottom line is that I'm not a typical case, so even though it's good to be prepared for and read about the worst, chances are your pregnancy experience won't be negatively life altering or tragic. Extra fatigue, slight flares in symptoms, or some discomfort on top of typical pregnancy stuff is probably more realistic. There's also the chance you will get lucky and your elevated hormone levels will mask your symptoms for nine months.

You will have your own list of pros and cons (or obstacles to factor in) when thinking about having kids, and it will be unique to your situation. Many women email me because they are unsure of when they can realistically expect to start a family, if they need to be in full remission, if they should put treatment on hold because they are older and feel as though they are running out of time--the list goes on, the ultimate question being, "When is the right time?"

Unfortunately, I'm not qualified to answer that question, but I can give you a list of things to think about before you make your decision. As always, take this advice with a grain of salt, as I'm no expert and often times don't know what the heck I'm doing when it comes to getting my own health in order. This is just what I've come up with during the past two years of pregnancy ups and downs:

1.) How long have you had Lyme, and when were you diagnosed? Have you had it for fifteen years but just started treatment a year ago? Have you had it for three years but been in treatment for two and are doing fairly well? There's a huge difference there. Obviously, the longer you've been in treatment, the better. I wouldn't recommend getting pregnant right away if you were very recently diagnosed or if you haven't been treated

2.) How are you feeling? I found with my first pregnancy that even though I wasn't at 100%, I had made good progress in terms of treatment and was confident that pregnancy would be hard, though my body was strong enough to handle it. In retrospect, I could have waited another year to really focus on getting my body balanced, but alas, not all pregnancies are planned and sometimes we don't have that option. If you're not feeling at least 80% and CAN wait a year to make sure you're stable, I'd suggest waiting just a bit. It's worth it for everyone involved

3.) Are you willing and able to change your treatment protocol to something pregnancy safe? Research your antibiotic options to make sure there are pregnancy safe meds out there that your body will tolerate. Keep in mind that pregnancy is not the time for hardcore treatment or even blasting away at the evil spirochetes. For 9 months you will be "maintaining" and just protecting the baby*) *Still no reports on how "transmittable" Lyme is to a fetus, so I go by the rule that it's better to be safe than sorry.

4.) Can you walk up stairs? Can you do some chores? Can you leave the house to run light errands? Basically, how functional are you? Now take what you can do and envision a potentially symptomatic day, carrying a bunch of extra weight, and pregnancy fatigue. Can you still function well enough to get through the day (with extra rest, of course)? Now picture doing your daily routine while holding 20 pounds of almost-walking-but-not-quite baby. Would these things put you completely out of commission at the moment? If so, you might want to wait a bit

5.) How is your attitude/mental state? Are you still mad at the world five years after diagnosis? Do you dwell on every ache and pain in your body, obsessed with trying the latest fad in the world alternative Lyme treatments, even if it sounds ludicrous or even dangerous? We have all been desperate to feel better, but if you are not able to fully accept that you might have to deal with some chronic pain indefinitely, you might want wait a bit, especially since you'll want to provide a safe environment (mentally and physically) however;

6.) Are you able to put your disease and pain into perspective--that it is inconvenient and completely unfair, but it doesn't mean that life is over? Are you able to do what you can to live as normal of a life a possible while remembering to rest when you need to? Do you love life despite your illness and are you willing to do what it takes to carry out your dreams and goals? It can be a struggle, but with a determined attitude, you will be just fine

7.) Do you have a good support system? Is there someone you can call on full time the first few weeks after birth, just in case you experience a Lyme setback and need help? Is your partner willing to go against the typical gender stereotypes associated with parenthood and pick up the slack if you can't handle all of the "new mother" duties (for instance, will he or she change poop diapers, bathe the baby, wash and fold clothes, feed, and soothe the baby at all hours of the night)? I know that sounds weird, but I've met more than a few traditional fathers (or father figures) who wouldn't dream of washing bottles, doing the laundry, or soothing a baby in the night. If your list of support is lacking, are you willing and able to hire a mother's helper if needed?

8.) Do you have a Lyme doctor that you like and trust? There's nothing worse than finding out you're pregnant and not feeling confident about your healthcare. Are you able to openly communicate with him or her about your concerns. Will he or she be readily available if you have a rough pregnancy? If you're really struggling and you have to wait 4 months to see your doctor, you might have some issues. If you're actually planning your pregnancy, it helps to make sure you're established with a doctor that treats you adequately and makes you feel comfortable

That's it for my list--for now, anyway. Any other Lyme moms want to chime in and add anything?

2011-04-30T11:54:00.004-04:00

(Tulips in our garden finally bloomed this week!)

Good news: For some reason, I'm feeling much better. I'd like to attribute that to the garlic pills, but alas, I haven't started them yet (don't worry, I'll get around to it).

I do not recommend doing this, and keep in mind, I'm not a doctor, so I can't tell you why this is happening. I also know it contradicts the "be on antibiotics at all times!" argument, BUT I've been experimenting. It started out as an accident. I fell asleep without taking my antibiotics, which I haven't done so far during the course of the pregnancy.

The next morning, I felt crappy, but not like hell, which is where I've been stuck for the past few weeks. I had energy to hold the baby and even do a few dishes.

During my last pregnancy, my LLMD took me off of all antibiotics for six weeks during the second trimester (stating that the most important times to be medicated are during the first and third trimesters), due to a bad allergic reaction to IV antibiotics. He wanted my system to clear out for a bit before we continued on oral Zithromax.

With that in mind, I figured that if I went Zithromax free for six weeks (looking back, that was the only time I felt GREAT during pregnancy). I could afford to miss a couple of days this time to see what happened. I've been "pausing" the antibiotics for four days now, (No, I didn't tell my doctor. Yes, I'm bad. I just want to make sure my theory is fully tested first) and I'm feeling pretty great. I have energy, I feel less "toxic," I've done chores around the house, napping less, and I even drove to the bank and planted a few seeds in garden this morning.

So was all of this terrible pain my body's way of telling me that it needs an antibiotic vacation? Not sure yet, but it seems too fitting to be a coincidence. On Monday I will start back on the antibiotics again. If I quickly decline again, I'm calling my LLMD immediately to say, "Hey, what gives?"

Again, I'm no expert, and I don't want to jeopardize the health of my unborn baby. I'm assuming I will be back on the antibiotics for the rest of the pregnancy, and I prefer it that way to be safe. However, maybe there's no harm done in clearing the system for a week or maybe even two when the pain gets to be too much? *This is a guess--I'm not sure.

The quick improvement is interesting to say the least, and I'm definitely enjoying this relief. Next week I'll either report back that I'm still feeling better even when back on the antibiotics, or that I've talked to my doctor about why my pain coincides with taking Zithromax (this doesn't happen on other antibiotics). Of course, I'll share his answers.

Ultimately, this little bit of energy has given me the optimism and hope I need to push through the next 11 or so weeks until our baby boy arrives. Regardless of setbacks, I can't believe how quickly this has all gone by!

Are We Alone In This?

2011-04-22T09:28:00.004-04:00

How helpful are your doctors actually going to be during a Lyme pregnancy?

Mike and I were hit hard with an "ah-ha" moment the other day. We were driving home from an appointment with the new LLMD. Thirty minutes into the drive, neither of us had said a word yet. I was feeling entirely disappointed and defeated, and when I finally broke the silence and asked Mike what his deal was, he replied, "I'm pissed, that's what's wrong! We just spent 3 hours of travel and over $300, and all we got out of it was a bottle of f*#&%ng garlic pills and a warning that you need to poop more. I could have saved us the time and money and provided both."

He was absolutely right. That was a huge part of the reason I felt to disappointed.

I found a new LLMD during pregnancy because I wanted someone who was more "hands on." In retrospect, I wanted comfort--to know someone educated and experienced was there for me during the course of pregnancy. My previous LLMD had done wonders in terms of treatment pre-pregnancy, but I always felt like he was dismissing me during pregnancy, and that he would gladly help out again once the baby hit the outside world.

Ultimately, new LLMD and old LLMD have done the same thing: Told me there is nothing they can really do to ease my symptoms during pregnancy, but have assured me that if I can just tolerate the physical discomfort and keep up with my antibiotics, things will all turn out fine. Old LLMD saves me a lot of money by saying, "Check in with me in a few months and call if there's an emergency," which is an honest, realistic approach, but it leaves me feeling alone.

New LLMD sees me monthly or more. He encourages me to sleep, eat well, and detox often, but he also says, "I'm sorry, I wish there were more I could do--we don't have any other options."

I tell him that last weekend I was in so much pain I swore I was dying, and that the nerve pain was more than I could tolerate. He pretends to have trouble filling out a form on his computer as I'm talking. He says," Hold on one second, I'm just trying to fix something here..." and then tries to change the subject after a minute or two of fiddling. When I press him on the matter, he suggests garlic as a last resort. Really? I'm a mess here, and I get garlic? (*Not saying garlic is a bad supplement, but that was like offering a Tylenol to someone with a broken bone. Plus, I was hoping for something a little more "big guns" from a doctor, since garlic and similar supplements are mostly something fellow Lymies and forums recommend when their own treatments have failed--might help over time, but I need to start feeling all of my body parts asap, you know?)

I think he's a great guy, and I think he has the best intentions--after all, wasn't I looking for a doctor who had more of a "heart" when it came to treating me and holding my hand throughout the pregnancy? I don't think he was ignoring me with the form purposely; I think he was uncomfortable hearing me say over and over that something had to be done when he was out of suggestions. Either way, I'm taking the garlic because I bought it, and I have no business complaining if I haven't tried every option available.

I realized quickly that I miss my old LLMD. He is straight to the point, but always has something intelligent and a little more "scientific" to say. He couldn't help me fix a pregnancy problem, because it usually required drugs that would potentially mess up my baby or cause an allergic reaction, but he could explain WHY I was feeling each symptom and where it came from so I'd have at least have an understanding of what was happening to me. (Ah, so I don't need a full on root canal--that face and tooth pain comes from a swollen 5th cranial nerve!?)

I've learned that, for me, I'd rather hear the sometimes harsh truth once (or twice) than pay extra to have my hand held with the same meager results. In this case, seeing the new LLMD so frequently actually caused more anxiety, because I had high expectations for this new doctor, and I was let down. We're also officially dirt poor due to all of these visits, which adds to the anxiety.

Again, this is not his fault at all. He's been kind and genuinely perplexed by the situation. This is a Sara problem, which I'm wondering if other women will run into during the course of treatment.

Pregnancy is a time of heightened emotion and we have the natural tendency to be extra protective of our bodies. Is it realistic to think that our doctors, who haven't had the "magic bullet" cure to begin with, are really going to be able to monitor us as treat us as frequently as successfully as we want during pregnancy? To me, the answer is no. I'm not saying that to be a downer, I'm just sharing what I've learned after being pregnant for the last two + years straight (good Lord!).

I think LLMDs are there to make sure there we have reassurance when we need it that we can make it through this. I think they are there to answer our questions as best they can, and provide us with the best meds given the circumstances, but Lyme pregnancy is ultimately something we are experiencing alone (though most of us are lucky to at least have support and encouragement.) The up side: chances are, you won't have huge symptom flare-ups, and pregnancy is a VERY temporary thing. The down side, it's easy to be let down physically and emotionally when you're having a rough time and you feel like there's nothing that can be done.

I just try to keep the faith and know that the discomfort passes. That, and I'm going to blast the crap out of these bugs once and for all after my little guy is born.

Mold and Other Icky Toxins

2011-04-19T09:36:00.002-04:00

After a few years of treatment under my belt, I'm embarrassed to say that it's taken me this long to take seriously the issues with toxins separate of Lyme. I've gone on and off of the "Lyme Diet," caving in to sweets and gluten when I'm feeling extra terrible (half because I actually crave it, and half because I have the tendency to be a destructive emotional eater when I feel like nothing matters anymore.)

But as I shunned the toxic sugar and gluten, I paid no attention to talk about mold and chemical toxins and how they affect the body. I still can't speak eloquently on the topic... right now I'm still in the curiosity/research stage, so if you have and info to share PLEASE do so in the comment section.

What piqued my interest is that my doctor keeps bringing up the issue of detoxification--something I could take or leave as I spent the last few years just pumping myself full of antibiotics. (Yes, dumb in retrospect.) As I sat this weekend in a haze of dizziness, nausea, and pain, I was brought back to a mental place I hadn't seen in three years.

I took my mother's advice and spent an hour sitting in a chair on her deck while she pushed the baby around in the stroller. Just watching the motion made me seasick. Sounds were coming in and out. The trees were a fuzzy blur. My heart rate kept speeding up, slowing down. I felt like I had 4 different strains of the flu, if that makes any sense. It was as if my body and my mind weren't connected at all. I couldn't cross my legs. They just wouldn't cooperate. I literally had to focus: "Come on legs, cross now...come on hand, pick up the cup." I could do it, it just took time to connect. Anyway, like I said, it's been forever since I've been here, and by here I mean plagued with a scary thought: Might I be dying? Is this what it feels like? I'm so out of it and tired, I could honestly just close my eyes and float away.

Then rationalization steps in. "Sara, you are not dying. You've felt this way before. It passes. And you don't have time to die anyway... the baby needs a bath and a bottle in 20 minutes." Still, I started to cry. I hope I'm not the only nutcase that has done this--jumps to the conclusion that they are about to croak and then actually starts crying over the made up death scene they feel they're about to experience. Anyway, it did in fact pass after a long nap, but not before desperation set it.

There HAS to be something more to this whole treatment thing. I can't be feeling like total shit just because I'm pregnant.

I am stretching far for answers, because I am stumped.

Out of nowhere, the Universe finally threw me a bone (yay for OBVIOUS signs) and flooded our basement. It happens quite often, but not to this extent. We live at the bottom of a grassy hill, we have a concrete slab basement with a billion cracks, and it's been raining like a bible catastrophe for the past week. The ground water seeps in (in this case it poured in) and no matter what we do, we can't get it to dry out down there. This time it reeks badly. I can smell it right now as I type, circulating through the house. Like old, moldy towels or a dark, drippy cave. The key word is mold. It's never smelled like this before. If we didn't have a mold issue before (which I'm assuming we did, as there's always some water coming in the basement) we certainly have one now. I think it's bad when you can actually smell it, right?

Now I'm in a state of anxiety trying to figure out how to fix this expensive problem, and on top of that, I'm a mess because my overactive brain keeps reminding me that every breath I take in is giving me a nice dose of toxins. I asked my old friend Google about Lyme and mold, and I found this article (written in a Lyme for Dummies style, so forgive me if you're way above this--I'm still new.)

http://lymebook.com/blog/the-recovery-process/mold-and-lyme-toxins/

Makes total sense to me. Now what do I do? Anyone have experience with mold or other toxins? Did it exacerbate your symptoms? How did you treat the problem? Anything you can safely take during pregnancy?

So grateful I have a LLMD appointment tomorrow. I'll ask him about it too and report back soon.

All Lyme Pregnancies Are Different

2011-04-07T21:42:00.005-04:00

Today I reached the point where my neuro issues were so bad, I had to call my new LLMD for advice. I'm used to hearing my old LLMD tell me to wait it out and call in a month to check in. There was never anything he could do during pregnancy to manage my symptoms due to allergies to basically all of the antibiotics safe for use during pregnancy. (Please note: this won't happen to everyone. There are plenty of antibiotics available. I just happen to be allergic to them. On top of that, I seem to be immune to Zithromax, the one I actually can take.)

After hearing this a bunch of times, it became a habit to avoid calling or reaching out on days I felt terrible.

It surprised me that when I called my new LLMD today, I actually sounded apologetic about having to bother him. He assured me that even though many doctors (LLMDs included) are hesitant to treat during pregnancy, that he wasn't, and he took my increase in symptoms very seriously.

Still, he didn't have too much to offer yet, but he did tell me this (not good news for me, but good for all of you considering making some babies):

- When I asked him if this sort of flare-up was common during Lyme Pregnancy, he said no, not at all. Usually the opposite happens, and women get a nine-month relief period from symptoms. He said he has treated a few women who have had lousy pregnancies due to Lyme, and also some who have had other medical issues that caused complications, but for the most part, the pregnancies he sees (and have heard about directly through Dr. K and Dr. B) have been uneventful. It's usually after delivery that the mother starts feeling lousy for a while.

- He still believes that detox is the best way to relieve many symptoms. We need our systems cleared out for them to run properly. In my case, he's upped the fiber supplements even more. He's also researching some herbs that are considered safe during pregnancy. Surprisingly, there aren't many that are recommended.

My doctor is taking some time to ask around and talk with other LLMDs to see if there is something that can be done for my pain and twitching, since he agrees that my treatment options are limited. I expressed that while I have no problems with going the herbal route, I'm just not comfortable pumping myself full of category C pharmaceuticals for pain. Once the baby comes, he can have me eat fertilizer for all I care--just as long as it works.

I'll hear back from him tomorrow. I'm just glad he's taken an interest in my case.

Bottom line: I'm abnormal when it comes to a significant health decline during pregnancy. It doesn't usually happen like this. I'm also abnormal in the sense that I started feeling better after I gave birth faster than most women do. If a big "relapse" occurs, it usually happens after delivery. I give all of the credit to minocycline. For some reason it helped me a great deal until I got pregnant a few months later and had to go off of it.

Do you have any remedies for treating neuro symptoms? If you do, please share!

Some Days Are Painful

2011-04-05T19:29:00.005-04:00

I'm trying to remember when my health took a nose dive during my last pregnancy. By taking a nose dive, I mean having the type of Lyme flare-up we all dread. The pain, fatigue, brain fog, or whatever else you've experienced throughout the course of the disease can all pick up again and put you out of commission for a while. I believe it was around 28 weeks for me. At thirty weeks I had some last minute improvement, but by the time 36 weeks came around, I was so ill that I had to deliver early.

I get email asking about this all the time. "I want so badly to have a child, but I'm afraid that once I'm pregnant, I'll relapse and be set back for years."

Here is the truth: The fear you have about this is far worse than what will actually happen to you. I'm not saying this will be a picnic. If you're unlucky and you do have a flare in symptoms, it's probably going to suck. A lot. You will have days where you wonder if you're going to make it, or at the very least, if getting pregnant was a good idea.

I promise you, these feelings and symptoms pass. All of the women I've talked to had it in their heads that the flare-ups would be some kind of permanent setback--like life would be over. Fortunately, it doesn't work that way, however, it might take some time to bounce back. NOT the end of the world.

Another common email I receive: "Oh my God...I feel SO sick. It's been three months since I had the baby, and I'm not getting better. What should I do?"

All I can say to this is try and relax. Of course, no one wants to be in pain, but three months is hardly a blip on the map of your life. Put it this way, if you've had kids before, you will probably remember when being pregnant seemed like it was a permanent state of being. Those nine months lasted forever the first time around, and every detail of your pregnancy seemed so important. You might have even accepted the fact that you were going to be a big waddling blimp forever.

But alas, the weight comes off, and little by little your old pants pull up higher over your hips. You adjust quickly to an even more different kind of life. The nine months you spent pregnant will seem like a quick, distant memory (Wyatt is 8 months old, and I already feel like it was ages ago).

So really, it will suck for a while, but the Lyme pain experienced after birth passes. You just have to be diligent with your treatment and learn to have patience.

I am reminding myself of this daily.

Currently, I'm very sick (which explains the absence and my slacking off at returning emails). I expected a decline in health to happen, though I viewed the upcoming struggles with much less anxiety because I already know what's ahead. Unfortunately, this flare-up is happening at 21 weeks and not 28. I'm a little ahead of schedule.

I know we all experience our symptoms differently and to varying degrees, so it's hard to tell someone, "Oh, you should prepare for this during your pregnancy flare-up (if you have one)." I can only tell you what I've experienced.

If you remember, I spent my first trimester feeling better than I had in ages. It was quite a relief to have some energy, feel like a "normal" mom to my son, run errands, and even have somewhat of a social life again. Slowly but surely the extreme fatigue crept in. Usually, the red flag goes up for me once I notice that I need a bunch of naps during the day to prevent a mental meltdown, twitching, and numb limbs.

Once the fatigue happens (I'm talking fatigue that makes it nearly impossible to lift your arms up or head from the pillow), things go one of two ways: I wait it out and rest for a few days and regain energy, or I decline to the state I'm in now, which is pretty pathetic and pain-filled.

I hope this doesn't come across as whining; I'm really trying to paint an accurate picture of what my days have been like in hopes of helping others decide if they're ready to make the baby commitment. (Again, you might have a different experience. If you feel like sharing it, please do in the comment section below).

So, as I mentioned, lots of fatigue. When I wake, it takes a good thirty minutes before I start to feel my hands and feet at all. My limbs are also weak, so I stay in bed and get acclimated for a while. My husband holds and cares for the baby during this time, as I'm afraid of dropping him. Sometimes if Mike has to leave early, he puts the baby in bed with me until I can get up and start the day. Wyatt crawls at lightning speed, but so far he's far more entertained by sitting next to me, smacking my face and pulling my hair than he is bolting off the bed, so we're good for now.

The baby naps at ten. I nap at ten. He naps at two. I nap at two. If I don't, the painful electrical current running through my body gets out of control. The sensation is like I am being jolted or electrocuted from the inside 24/7. Sometimes it's just mild but annoying, as if your arm has been asleep and is tingling as the blood returns. Sometimes it's so intense, I have to meditate and try to get out of my mind, because I can't tolerate being in my own body. I have not found a medication that helps with this nerve pain, especially one that's safe during pregnancy. Last night I dreamt that I dropped a hair dryer into the bathtub and electrocuted myself--nerve pain has officially followed me into sleep territory. By the way, this neuro stuff comes from the Bartonella.

Three days ago, I lost all feeling in my legs and couldn't walk. My parents helped me out with Wyatt. Eventually, I regained mobility, but it comes and goes. My hands also turn into little claws throughout the day, and I can't feel or use them either. During these times, the little guy is great about playing in his pack and play or in his activity center. For the record, we have two pack and plays, and would have one for each room if we had the space or money. They are God's gift to Lyme moms.

I'm having convulsions at night that aren't quite seizures because I can remember them, however, they look like them and are completely out of my control.

Finally, the Tourettes-like twitches, tremors, Bell's Palsy, poor circulation, blurry/double vision (no driving--booooo), migraines, blood sugar drops, and racing pulse are all back again. There's more, but I'm starting get tired of typing all this.

There are two reasons why I haven't jumped off a bridge yet. OK, make that three: 1. I have children and a husband to love and take care of. 2. I know this flare-up is SO temporary and not like the days before diagnosis where the dark times lasted forever. 3. I felt like this last year during pregnancy and lived to tell about it, and I've been through worse before.

I also know that this could subside at any time--it's all so unpredictable--maybe my third trimester will be tolerable.

My doctors aren't as optimistic about this as I am, and they've moved my due date from August 18th to early to mid July. I love that they are looking out for the baby and me. As much as I don't like the idea of evicting my kid, part of me is so relieved that I now only have about 3 months to go.

There's that magic three months number again. A blip on the map of my life, right? It will all be worth it.

*Sorry if this post is all over the place and peppered with bad grammar. I don't have it in me to really edit this time around.

Another Boy!

2011-03-25T10:06:00.003-04:00

It's official: We're having another boy!

We had our Level 2 scan with the high risk specialist, and all is great so far. Growth is right on track, and he's a very active baby. They did find a "freckle" on his heart, but I've been assured that this is normal and we should not be concerned. Sometimes heart freckles are a marker for Down Syndrome, but in our case, all of our tests came back negative for Down, and in most cases, the freckle will disappear before babies are even born. My gut tells me that this is a very healthy boy.

He's much different in personality and looks than his brother. On the ultrasound, Wyatt showed us his boy parts before he even showed his face. The tech put the wand on my belly, and BAM, there is was, hangin' out there for all to see. Good thing we didn't want it to be a surprise!

Wyatt's new brother is shy. He turned from the wand as it came at him. He crossed his legs for so long and kept his stuff hidden--the tech thought he was a girl at first-- mysterious little guy, I guess. Overall, he is much gentler on my body than Wyatt was--so far at least. I still have at least 16 weeks to go (we are all assuming I will have to deliver early again, as I'm ready to jump off a bridge due to Lyme pain in the third trimester.) My occasional cravings are frozen yogurt, regular yogurt, and fruit. Thank God. With Wyatt I wanted Cheetos, cheese, strawberry milk, and every other junk food you can imagine.

When people say that each pregnancy is different, they're not lying. If you had one terrible Lyme pregnancy in the past, it doesn't mean that it has to be that way again. Time is FLYING, and though my Lyme symptoms are still gaining momentum, I pretty much know what to expect. This time around, I'm able to just sit back and enjoy what is my last pregnancy, even when it's uncomfortable, because I will miss the indescribable feeling of carrying new life.

I feel a slight sense of sadness knowing I will never have a little girl--even as a kid, I'd always just assumed my babies would be female. At least one of them anyway. We are firm believers in not having more children than you can handle or afford. We're pushing our limit at two, though when I think of Wyatt having a little brother so close in age, I can't even dream of having it any other way. I will be surrounded by boys, and the more I envision it, the more I love it.
I feel lucky to have been able to get pregnant in the first place, and as hard as a Lyme pregnancy is for all involved, I will never regret my decision to have my children. As far as I'm concerned, they've made me feel like I'm the healthiest person alive.

Vitamin Deficiencies

2011-03-22T19:56:00.006-04:00

I just returned from what I consider to be a bad news Lyme doctor appointment. I'll preface this by saying that I'm really glad I found this new doctor--he is very thorough and ran a bunch of blood tests when I first met him last month. I wish I had done this much sooner, as my results were pretty sucky.

I was just over the line on being positive for an autoimmune disease (he mentioned Lupus), though the doctor assured me that these results are very common in Lyme, so I shouldn't jump to any conclusions.

I also tested positive for Rheumatoid Arthritis. It depends on what kind of doctor you talk to--a RA specialist would diagnose me as positive and that would be that. Lyme doctor says that this, too, is part of Lyme and also shows up in tests.

The one he was most concerned about at the moment is one I think we should all look out for: vitamin deficiencies.

Apparently, I have a severe Vitamin D deficiency. Normal level numbers fall between 30 and 100, with the average falling in the higher end of the scale. I scored a measly 12.

I insisted that I see the light of day, and I eat plenty of very healthy foods rich in Vitamin D. I also take a prenatal every day and I (ashamedly) eat cheese like it's my job. There's no reason I should be lacking. He told me that it's more common than you'd think in pregnancy, but it could also be from the amount of heavy metals in my body (specifically lead). Healthy people have the filtration systems to flush all of the metals and everyday toxins out. Lymies tend to shut down, which leads to toxicity, which leads to the body not being able to process the good things we take in either (?) I add the question mark, because I'm still processing this info, and I'm not sure what to make of it.

I never discussed metals and detoxing in detail with my previous LLMD. Now I realize that this is a crucial part of getting the body back in balance.

So here's the deal: ask your doctor to run some simple vitamin tests. I was under the impression that OBs did that anyway, and that might be the case, but this is the first I've even thought about this vitamin issue. It's super important for you, and even more for your baby.

As soon as I got in the door, I hit up my old friend Google and nearly had a panic attack when I read what can happen to a baby when the mother has a Vitamin D deficiency (Rickets, fractures, mental retardation, Autism, abnormal and delayed growth, Diabetes, just to name a few.) Here's more info if you'd like to read about it (this link doesn't talk about Lyme--it's pretty generic. I couldn't find articles on Lyme, Vitamin D, and pregnancy).

To treat this, my doctor put me on a Vitamin D supplement (5,000 IU a day of XYMOGEN's Liquid D3). A normal, healthy person dose is 1,000 IU, but he jacked it up, and I'm fine with that.* Apparently the liquid vitamin is suspended in sunflower oil because it helps the body absorb it better. Random, but I love that this stuff is manufactured in Orlando, Florida (my hometown).I like to think that they sucked up and bottled up some of the sunshine state's finest rays. Who wouldn't feel better knowing they were gulping down some liquid sunshine in a glass? I guess I don't care what it is as long as it works...

We have our big high risk doctor ultrasound tomorrow morning at nine. I'm interested in what he has to say about vitamin deficiencies. I imagine that if there is a growth problem it will show up as they examine the fetus. Fingers crossed for a healthy exam. Fingers crossed again that this baby isn't shy and will show us its parts. We're dying to find out what we're having!

*Note: Please talk to your doctor about your own supplements and doses. I'm just sharing my own experience, and I'm not qualified to tell anyone else what to take.

Whitney's Mommy's Positive Experience with Breastfeeding

2011-03-07T14:06:00.004-05:00

For those of you interested in breastfeeding, here is a great example of a positive experience, compliments of my greatest Lymie friend:

Q: How long have you had Lyme, when were you diagnosed, and how long have you been in treatment?

I started feeing ill in July 2006 and was diagnosed and treated in November 2006. I am still on antibiotics.

Q: Were you on antibiotics and/or supplements during pregnancy? If so, what were you taking?

Yes. First 6 months of the pregnancy, I took bicillin shots and oral Zithromax, then I stopped the bicillin and replaced it with oral Amoxicillin. I also took prenatal vitamins, Metamucil, vitamin c, and Womens 1 a Day.

Q: Are you on anything different now that you're breastfeeding?

No, everything stayed the same while breastfeeding.

Q: Have you been nervous about Lyme transmission? If so, what has
helped you calm your fears?

Yes, very nervous. But I thought the benefits outweighed the risks and my husband agreed. I have a friend who has Lyme and breastfed. She did not take any antibiotics during her pregnancy or while breastfeeding and the baby is 2 years old now and doing well. I have another friend with Lyme who breast fed and the baby is a year and a half and also doing well.

Q: Did your LLMD advise you to breastfeed?

I have 2 LLMDs. One encouraged breastfeeding. She said that if there were any bacteria in the milk, the baby's stomach acid would digest it. The other said he would not encourage it or discourage it. He said if this was a few years ago, he would have said no, but now, with the benefits of breastfeeding being so great, he would leave it up to me. In his experience, babies with Lyme have it because the mother was undiagnosed and not treated prior to or during her pregnancy. Dr. Burrascano's guidelines say that there has been evidence of the Lyme bacteria in breast milk and he advises against breast feeding. However, the guidelines are old and I'm not sure if his view has changed. This issue was addressed at the 2010 ILADS conference but I did not hear the presentations. I will try to get a copy and report back.

Q: Can you describe your experience with breastmilk testing?

My LLMD ordered testing of the breast milk, cord blood, placenta, and baby's urine through Igenex. I heard that you can also test the foreskin from a baby boy. I had a girl and decided not to test the urine because they would have had to catheterize her, which is uncomfortable and can cause infection. I pumped some breast milk, put it in the vile from Igenex and shipped it to them. It took several weeks to get the results, which were negative. The cord blood and placenta were negative as well. There are always false negatives, so we can never be sure about accuracy. If there was a positive I would have had to make a decision on how to move forward at that time. My LLMD said he had never seen a positive result for active infection, but has seen a positive antibody result. Positive for antibodies are ok. Either way, he has always had healthy babies.

Q: Is there anything especially important we should know about breastfeeding with Lyme, for instance, has it been easy for you to handle or are there difficult aspects you hadn't anticipated?

I think it depends on the mother and baby. If you are calm and your baby latches on well and is a good eater then it will be easier. I don't think there is any difference between someone with Lyme that is breast feeding or someone without Lyme that is breast feeding, except maybe the fatigue. It could be worse for us. I hired a baby nurse, who gave the baby formula at night. If this is not an option, you can get the daddy to do it or another family member. So I just did not produce milk at night and I was ok with formula feeding in between if I was too exhausted or did not feel well. You can always pump as well, but I did not have the patience for that. :-)

Q: Is there any reason you would stop in the near future (due to Lyme) or are you managing well on your current protocol?

Yes, I have decided to stop breast feeding after 12 weeks so that I can resume more agressive treatment.

Q: Based on your experience, would you recommend breastfeeding to other Lyme moms?

YES. It was great for bonding and I felt great about giving her something that no one else could. However, it is very demanding, which is why I used formula as well. That way, I could breast feed when I was up to it and if not, then someone else could give her a bottle and I could rest. The less you breastfeed, the less milk you will produce so if you do take a break, try to take it the same time every day so you don't lose your milk. I mentioned I did not feed in the middle of the night so I could rest and let someone else take over.

Staying Positive

2011-02-27T21:50:00.005-05:00

I know last week my post on symptoms returning was a little disheartening. Honestly, my situation was looking pretty bleak, and I wanted to share that there are some tough, low points to Lyme pregnancy. You really don't know what you're going to get at any time.

I'm happy to report that the worst of the symptoms have subsided. I swear, it has a lot to do with the fact that I am hellbent on remaining positive throughout this. I even make a game of it now... how ridiculous can I get with my positive outlook (because if you can't laugh at yourself, you're screwed.)? So when I'm at the doctor's now and he tests my leg reflexes and tells me they're really weak, I say, "Yeah, but I have reflexes?" When he confirms, I raise my arms, victorious, and say, "SWEET!" Cause really, when you feel like things can't get any worse, they actually can, so you might as well try your best to stop the downward spiral before it gets out of control. ;)

So, one week later, I'm dealing with some pretty serious fatigue, tingly arms, and weak legs. No issues with brain fog or memory. I know my husband's AND my middle name. I can now get money from an ATM. Unfortunately, I still know the number on the scale (though it went down 8 pounds since hydrotherapy. Woohoo!).

When you have those rough weeks, just keep saying, "I may feel like crap today, but I've felt worse, so this is nothing." Or if you're a little less jaded than I am, say," Look how far I've come. I will get through this!" Because you will. That's the truth.

Lyme Digestive Issues Exacerbated by Pregnancy

2011-02-21T20:44:00.008-05:00

I've had this blog for over a year now, and I pretty much feel comfortable talking about anything Lyme related, except for one thing: digestive issues. Not that I'm uncomfortable talking about poop--we all do it--it's just that some aren't comfortable reading about it, and I don't want to freak anyone out, HOWEVER...

I had such a major breakthrough in detox today, and I have to share this (minus the gory details for you squeamish types):

Over the years, Lyme has basically frozen my peristalsis (the muscle contractions that push your food and waste through your body). I haven't been able to go to the bathroom without a stimulant laxative for nearly ten years. I used to think not going for 7 days was bad. Last month, I hit my record of not going for 34 days. Before your mind explodes at the thought of that, just know that I'm not the only bloated, grumpy constipated Lymie out there; I've talked to many, and some have gone even longer than a month (I'd jump off a bridge. Seriously.)

I've had every test known to man. Specialists would give me Miralax, supplements, enemas, crazy diets, blah blah blah, and then get stumped. Before they dismissed me, they'd say, "Go ahead and take stimulants, and good luck to you."

Do this for ten years, then get pregnant, and to your horror, those stimulants will stop working, and you're left with nothing but pain, despair, and a very concerned OBGYN.

Last week, New LLMD was the first doctor ever to take my condition seriously. He went so far as to say that my lack of detox is hurting me far more than Lyme and Co., and since I don't sweat either, I'm just sitting around poisoning myself. He believes that if I can start going numero dos daily and on my own, I might even have as much as 50% of my symptoms eradicated.

He put me on the following supplements:

1 scoop of Trufiber and 1 Enzalase (digestive enzyme) at bedtime
1 scoop Miralax in the morning
1 Therelac probiotic in the morning
1 tbs Biopure electrolytes mixed with water
1 tbs Biopure Microminerals mixed with water

My jaw dropped when they checked me out and the supplement cost alone was $180 for a month's supply, but I put my trust in the doctor, took the stuff, and I swear to God the very next day I finally had a toilet victory. I wouldn't win an award for it or anything, but at least it was something, and it's only getting better.

So if you have some issues down below, I highly recommend these products. All are safe during pregnancy.

And if you can stand to read further, here is my life-changing experience:

LLMD also recommended colon hydrotherapy. (Safe after the first trimester.)

Let me preface this by saying that as much as I try to be open-minded toward Lyme treatments, I think a bunch of the methods people talk about on Lyme forums are hocus pocus. Also, even though I'm all about natural treatment, shooting a daily coffee enema up my ass for detox is not something I care to do (though some swear by it, and I say all power to them).
What I'm saying is, I'm a skeptic, and I believe in hydrotherapy as a great way to jump start fixing a detox issue.

So anyway, hydrotherapy--best thing I've ever done for myself. Ever. It sounds and looks scary when you Google it, but I swear, it's not bad at all. It was actually kind of relaxing, and afterwards you feel like you lost ten pounds.

I know some of you still reading this far will move on and won't think twice about this post, because most of you don't have this problem. That's WONDERFUL. I envy you. :)

For those of you that do suffer from constipation, coming from someone who has struggled with this for years, you HAVE to try this, whether you're pregnant or not. My results were immediate: detoxed and feeling so much better in just an hour. I'm going for another round next month. I wish someone had told me about this years ago; it would have spared me (and my loved ones who have had to deal with my complaints and laxative abuse) so much trouble. Therefore, I'm passing on this little cleansing secret to you and anyone else who will listen.

Butt therapy: It's fabulous.

*Quick revision note: I was extra tired when I wrote this and forgot to mention the actual reason for this post in the first place! If you have a sluggish system due to Lyme before pregnancy, chances are it's going to get even worse while you are pregnant due to those lovely little hormones, as well as the baby taking up space. As you probably know, pregnancy is known to cause constipation in anyone, not just Lymies, so prepare yourselves for some possible uncomfortable times ahead.

A New Perspective on Lyme Pregnancy (Intro)

2011-02-18T19:21:00.005-05:00

Well, I had a good run. Twelve solid weeks of feeling better than I had in years--bouncing Wyatt around the house, running up and down the stairs to grab baby supplies, passing on a nap so that I could wash dishes or clean up so my husband wouldn't have to do it once he got home. I've been entirely grateful for every "normal" minute I spent during my first trimester.

Sadly, my glory run seems to be over (for now at least). Not sure what happened, but I hit thirteen weeks last week, and all hell broke loose. Strange, considering the second trimester is supposed to be the best. I can hardly feel my arms and legs. Sometimes my legs are so weak, I have to physically lift them with my arms to adjust my position in a chair. I am twitching and exhausted. By blood sugar is all whacked out. In the span of a week I've forgotten my husband's cell phone number, my debit pin, and my middle name. No joke. How does one go from dancing around with a baby, playing the joyous role of happy mom, to being a housebound, brain dead invalid in a week!? And while I'm on a roll here, how come I only forget the important things? Why can't I forget my weight, my credit card balance, or any of the arrogant doctors who told me I was a nutjob? :)

It all beats the hell out of me.

I've been in treatment for three years, and while I didn't expect to be running marathons at this point, I thought (and desperately hoped) I'd at least have some stability with my health. I think what I hate most about Lyme is its unpredictable nature. You never know when you're going to have an attack, and in turn, that makes you an unreliable person. I've cancelled appointments and plans left and right, and I'm definitely not going to drive around town with my baby when I could faint or have double, spinning vision at a moment's notice.

Pregnancy is probably not the time to start exploring millions of options, but I started thinking that after three years of blasting this crap with antibiotics and getting short term positive results at best, it might be time to try a different approach. I'm not saying I'd ever go off antibiotics during pregnancy. (PREGNANT LYMIES NEED ANTIBIOTICS!) I just felt like maybe I was missing something important.

When I find doctors I like, I give them 90% of my trust. The only person I give 100% to is myself, as I've learned to fully trust my instincts over the years when my body is involved. My gut said find a different LLMD. The next day, a new fellow pregnant Lymie friend recommended her doctor to me.

He happened to be an hour away, and he's a D.O. (Doctor of Osteopathy), meaning even though he treats like your average doctor with antibiotics and such, he also focuses on mind, body, and spirit as a whole. D.O. work to get your body back in balance, toward wellness, instead of just finding a disease and blasting away at it. Just to note, my other LLMD does this to some extent, as well, but not to the extent that new guy does it.

Anyway, I saw the new LLMD yesterday, and even though he told me the same thing my other LLMD told me (Due to my allergies to all penicillins, I am pretty much stuck with Zithromax, whether it helps my symptoms or not. I just have to suck it up through the pregnancy, and we'll kick some butt after I give birth) he also shed some new light on Lyme pregnancy. Here are a few things I learned or had reaffirmed:

* Antibiotics are a must during pregnancy. If you're untreated, you have about a 50/50 shot of passing it on to your baby. If you're on one antibiotic, there's a slim chance you'll pass it on but not likely. If you're on two antibiotics (an intracellular like Zithromax and one that tackles the outer cell, like Omnicef or another cephalosporin) there's basically zero chance of congenital transmission. I'm curious to see actual studies and real numbers--this is something I will ask about next time I see him

* Like the two other LLMDs I've seen, this one says absolutely no breastfeeding and that it can pass through milk

* He's having me hold off on testing Wyatt (at nearly 7 months old), because the cord blood test came back negative, and that's pretty much a guarantee that things are fine. We will still look for unusual symptoms, but for now, we won't mess with anything that's not broken

* Probioitcs are just as crucial as antibiotics during pregnancy (I've always been a slacker when it comes to taking them, but now I know better. Our digestive tracts get messed up during pregnancy, and we have to keep our guts in line. Our symptoms will flare otherwise

* Simply blasting away at Lyme and Co. with antibiotics will only get you so far. We also have to heal the other parts of our bodies that Lyme has broken. During pregnancy, doctors aren't going to treat super aggressively, so it's a perfect time to work on other aspects of healing while you're coasting (in some cases suffering) through nine months of a "holding pattern" type of regiment. Those other aspects include your digestive health, fine tuning your diet, getting some exercise (I don't mean heavy cardio or anything--start SMALL), detox, meditate, SLEEP.

Most of my questions at this initial meeting were about my specific Lyme case and I didn't have time to grill him on pregnancy stuff. He had to hear my story and assess my health before anything else could happen, so when I see him again next month I'll get more into the pregnancy issues. I'll then post a Q&A style report.

In the meantime, please forgive the infrequent posts. I'm struggling with symptoms right now (though I think the worst is over --I was actually able to walk down the street to the mailboxes today, which doesn't sound like much, but you should have seen my sorry butt a few days ago...)

If you have specific questions on areas I didn't cover, feel free to email me. I'm not sure how much to write publicly about my specific ailments and treatment plan-- I try to make topics accessible to everyone, so for now I'm sparing you details. This doctor was great and full of interesting things to say about Lyme and Co. in general, so I'm up for comparing notes.

Finally, since I'm on the topic of email, I want to apologize to the bunch of you who haven't received a response from me yet. I swear I haven't forgotten you, and I don't mean to be rude. I WILL get it together and respond asap. Thanks for your patience.

Lyme Pregnancy: A Dad's Perspective

2011-01-31T21:13:00.003-05:00

*(Above) This is my husband, Mike, with his baby boy.

It’s an early fall evening, 2008. Sara is staggering into the kitchen of our apartment, weaving, washed out with fatigue, and collapses into my arms. We sink to the floor. I hold her, unable to fix whatever has happened, has been happening.

What is wrong with me, she sobs.

The next years will be brutal, but she guts it out, and we learn to survive, even thrive, albeit with changed and changing definitions.

Fast forward to 2010. It is about 9am on a chilly December morning. I am playing with our 4 month old son, Wyatt. He’s a beautiful boy. He’s beating all of his milestones by weeks and in some cases months. He’s gaining weight. He’s growing. He’s Lyme free.

This little boy is not the offspring of a woman still battling the vicious aftermath wrought by a decade of untreated Lyme Disease. How could he be? He’s too strong, too happy, and too much a part of his world.

We’d been pregnant before. There was a short lived pregnancy immediately before the worst of the lyme symptoms. Before wheelchairs and months long stints laid out on the couch, sinking under waves of panic and neurological chaos.

Eighteen months or so down the road, miles of IV tubes and thousands of pills later, there was also a set of twins who either didn’t want to come to the party or couldn’t find the house.

Wyatt was the one that stuck around. Sara knew he would. Barely a day after we’d had the sex that started Wyatt, she called me at work.

This woman, I’ve learned, is connected in ways that I can’t fully explain.

I’m pregnant!, she said. Great!, I said.

It wasn’t an easy pregnancy, but it wasn’t the tumultuous rollercoaster to doom that I had, in my darker moments, envisioned. And there were darker moments, I assure you. But they gave way to lighter moments, which mean that much more for trouble endured.

There were concerns throughout the pregnancy. Antibiotics. Would our baby come out deaf or blind or worse due to the continuous stream of toxins? If Sara relented on the medicine, would our baby then come out with a nervous system compromised? We found ourselves questioning symptoms. Baby or spirochete? Spirochete or baby? We’d talk at length. We’d add it up, chop it up, and distribute accordingly. We were keeping a close watch on the home front.

Who had answers? It took 10 years and luck to diagnose Lyme in Sara. As for Lyme’s impact on pregnancy? Good luck, sweetie. The primary Lyme Literate doctor who’d been overseeing treatment had effectively washed his hands of Sara until such time as she was without child.

So there were trips to more specialists. Lyme could be transmitted across the placental barrier, they said. Then again, Lyme could not, they said. What of breast feeding, doc? You shouldn’t. Spirochetes can travel that way, they said. Then again, no they can’t, they said.

Such is lyme disease in the days of cover your ass medicine.

There were brief scares. Unexpected cramps here. Spotting there. A night or two in the hospital for observation, for nothing other than piece of mind. Lyme had made the pregnancy high risk, but we’ll never know to what degree, if any, that Lyme played a role in the pregnancy.

Wyatt, however, was sticking around. No matter the cramping or bleeding that occurred, or days of numb arms and legs, or twitching and body-wide electricity, or forgetfulness, or any of the usual symptoms that ebbed and flowed, Wyatt remained the serene little center of our universe, dividing cells and becoming more discernibly perfect with each ultrasound.

Sara has poured herself, sum and detail, into this blog, and I know it has been of some assistance and hopefully some comfort to the many women out there that find themselves at the beginning of all this craziness. As for the partners of those women, and the fathers of those children soon to be, I can pass along some advice:

Everything will work out. The odds are solidly stacked in your favor. There is every reason the pregnancy and new life will be just fine. Stay positive and treat yourself and your partner well.

Whatever trouble you are having with your partner’s Lyme Disease and pregnancy, it’s harder for her. A whole hell of a lot harder. Be gentle. Be easy. Be calm. Listen always. Guide when you can. Above all, be the voice of hope and strength when she is spinning out and falling apart.

Be cognizant of her physical and mental shape, and check in with her from time to time, but don’t make the disease the focus of the relationship. She is sick enough, and pregnant enough without the continuous reminders. Distraction and healthy denial is sometimes as good as medicine.

The Lyme and the pregnancy are hard on her body. Do as much as you can to help her with the things she has a hard time getting to. Walk the dog. Clean the house. Make dinner. Do what you can to make sure she has some down time that is all hers.

Our experience appears to have a happy ending. Wyatt is a tough little dude. Neither of us can believe we made this amazing child. Amazing and healthy child.

Mom is hanging in there. The worst of the Lyme is behind us, and we know better how to deal with flare ups. We take it day by day, hour by hour. We steal the best moments, as you sometimes have to in life.

Roll it back to July 22, 2010. It’s a warm Summer evening. I am outside the swinging doors of the operating room where doctors are separating Baby from Mom.

Mom is silent, fully anaesthetized.

Baby comes out screaming.

A nurse brings out our wet, unhappy but completely healthy son.

Sara, there is nothing wrong, everything worked out fine!

And it is me who is sobbing this time.

Lyme, Your Partner, and Starting a Family

2011-01-31T18:40:00.005-05:00

*Above: The day before the big Lyme crash.

Not all obstacles of Lyme pregnancy are physical, but sometimes it's easy (or necessary) to put other important parts of our lives on the back burner because all we can focus on at the moment is fatigue and pain.

There's a stupid cliche I hear once in a while... something about love and our spirit and our relationships being like flowers that need water to grow. I can't remember it now (nor do I want to--it's cheesy), but let's just put it this way: In order to function as a happy, healthy family, ALL aspects of our lives need watering, not just our own physical needs.

I've received a few compliments lately about how wonderful my husband sounds. I'm so tempted to make a messy husband joke here, and trust me, I could, but I won't because these compliments are true and he deserves some credit. He is more than I could ever ask for when it comes to being understanding, supportive, and loyal during our long battle with this illness.

After reviewing my relationship and how we came to be a family, I got to thinking about what a tremendous decision it is for a couple to decide to have a baby when the mother of that baby is sick. Even without children involved, it's a constant struggle (though most won't express this publicly) to maintain happiness, balance, and normalcy in a relationship where Lyme is involved. I would say that this area of my life has needed as much water (if not more) than my physical/treatment area, and if there's one piece of advice I can give you before you try for babies, it's that you should make sure you and your partner are in love and ready to move on with a family because you want to and not solely because you feel like you're running out of time or you're trying to rekindle a dying flame that's been snuffed out by years of illness.

Regrettably, I was married once before to a man who didn't believe I was sick and often accused me of being a lying hypochondriac. He was terrible and downright cruel to me at times, and he's not even worth taking up anymore space writing about.

Mike, my real husband, was the best friend who helped me through the hard times that follow a divorce. He was charming, funny, kindhearted. He was the exact opposite of the evil ex-husband. We ended up quickly falling in love.

This was all before my diagnosis. I remember telling Mike after just a few months of dating that I truly believed something was wrong with me and that I feared it might be cancer. At that point I knew there was something terribly wrong, and no one was able to find anything concrete, so I figured there was a tumor or two growing in me somewhere that they hadn't located yet. Instead of running away or chastising me, he looked at me calmly and said, "Yes, for all we know you might have cancer. But I'll be right here with you no matter the outcome." That's when I really knew I had found my partner.

A few years and many hospital visits went by. I'd go through periods of having a normal life aside from constant fatigue, mixed with a few bad months. September of 2008 was when the big and final crash happened--I was not bouncing back from this without serious help and a diagnosis. This also marks the time when our relationship started to require some extra water.

At our highest, we shared loving moments you only read about in sappy Nicholas Sparks' books: I had just been diagnosed, I was lying on the couch herxing my brain out, eating some soup Mike had made for me, and both of my hands suddenly stopped working. They just froze turned into bent little lobster claws. The spoon fell to the floor, and I just sat there, horrified, dead silent, with tears streaming down my face.

Mike calmly got up, got another spoon, and simply said, "It's OK, just calm down...you need to eat. This will make you feel better." Then he started feeding me. If no one has ever had to feed you before, let me tell you, it's all at once the most beautiful, humiliating, loving, vulnerable, heartbreaking thing ever, especially when you're young and afraid you might be dying. But I trusted him and he obviously loved me, and for a while our relationship was adequately watered.

At our lowest, he became the caretaker and I became the sick person. A year and a half in, it no longer seemed like a temporary situation, but a deep rut we had both fallen hard into. He'd come home from work to a knotty haired, unsexy, sweatpants wearing invalid. I forgot how to do things for myself and relied on him heavily out of habit. I had lost my independence, even though I wasn't as sick as I used to be. (*Spoiler alert: If your illness takes over your life and becomes who you are, you will never ever heal). Mike started to make himself feel like he was obligated to fix everything, placing unrealistic expectations on himself and then resenting the relationship when things didn't get better. He felt responsible for me, like a guardian, and grew tired of the routine where we talked about my symptoms ALL the time, even when he initiated. We were feeding off of the ugly roles we had created for each other. Our relationship was in a drought and in desperate need of water, and a few times things got so dry we thought we wouldn't make it.

Obvious statement of the year: Lyme Disease affects everyone you love. The problem we get ourselves into is that the person infected starts to feel guilty for holding the partner back or being too much of a burden, whether it's mentally or financially or whatever else you can dream up while psychologically punishing yourself as you lie insomnia-ridden in bed.

Let's be honest though-- Lyme Disease is a burden. The key words here are Lyme Disease--not you. The person is not the burden; The disease is the burden. We couldn't fully move on until we internalized this. It has the potential to ruin a couple, but it doesn't have to if you can separate yourselves from it. The financial issues, the days spent in bed, the endless physical ups and downs, are a result of bacteria, an illness a Lymie has no control over. Putting blame on yourself or another person is counterproductive to healing and loving.

Anyway, back to the point. At our lowest, we gave it one more shot. We communicated our anger, fear, resentment, sadness, frustration, all of it. And then we decided that our love for each other (as people, not the roles we sometimes play) was stronger than spirochetes, and soon were were ready to do whatever we could to live a normal life together. Sometimes that means I don't complain out of habit (trust me, your partner knows by now you feel like shit 24-7). Sometimes it means my husband has to work a long day and then take care of the baby because I need rest in order to be a good mom the following day. When you can work together and feel optimistic as a unit, you are ready for babymaking.

I strongly believe that if two people are in a solid, loving relationship that they are happy to be in (despite stupid disgusting Lyme Disease), there's no reason why they will struggle too hard as parents. Just know that it will take extra extra watering sometimes, and often a lot of added responsibility for the healthier partner. Please read the next post written by my husband. I swear, I didn't pay him to say nice things about our relationship. We've worked hard for all of this because it's worth it.

Lyme Pregnancy Q & A: Heather's Story

2011-01-20T14:20:00.007-05:00

Heather's had her fair share of struggles with Lyme. She's a huge inspiration to me, as she's still in the beginning stages of her treatment (remember those extra scary dark days?) and still manages to care for her kids, all while battling illness, making a difficult move across the country, and doing what's best for her family, even when it means making tough decisions and sacrifices. Here are some of her thoughts based on her Lyme pregnancy experience:

How long have you had Lyme; When were you diagnosed?

I have had Lyme disease since 1989 when I was bitten by a tick in the Sierra Nevada mountains in CA. I wasn't diagnosed until mid - 2010 and my real, debilitating symptoms started in 2007.

Were you treated before and/or during pregnancy? If so, what were/are you taking?

I was not treated before or during either of my pregnancies because I didn't know I had Lyme! I suspected I had something that could be killed by some sort of anti-fungal or antibiotic so before my second pregnancy I was on Olive Leaf Extract and Lauricidin. DURING my second pregnancy I was on Lauricidin, Vit. D, and prenatals. But I had no idea I had Lyme or that whatever I "had" could possibly be given to my unborn child. I'm thankful for (so far) very healthy girls.

How did you feel physically during your first trimester?

Both of my pregnancies I was so so exhausted the first trimester. I could hardly do anything. I was also so nauseated that I threw up until week 21! I tried all sorts of anti-nausea meds and none really did the trick.
Second? Like I said, mid-way into the second trimester I still was throwing up. But once it passed I felt great!!! NO fatigue, no joint pain, everything was awesome physically! My husband and I actually thought that being pregnant was the answer to avoid all the pain and fatigue I had been in.
Third? Both pregnancies ended up with me having kidney stones in the third trimester. There isn't much they can do for you when you're pregnant so I just had to stick it out until they passed. And toward the end of both pregnancies I was pretty tired.

How did you hold up mentally during your pregnancy?

First trimesters I was always depressed. Probably because I felt so ill with no "light-at-the-end-of-the-tunnel". And my second pregnancy I was also depressed in the third trimester but it went away fairly quickly after my daughter's birth. Again, since my Lyme symptoms had disappeared during pregnancy and I also didn't KNOW I had Lyme, there wasn't much to worry about. I think if I got pregnant again now that I know what disease is hurting my body, I'd worry so much just because those hormones make you so imbalanced! Crying and irritable and for me, irrational sometimes.

Did you experience a flare-up in symptoms after delivery?

Most definitely, but not until about 2 months after the birth did the flare-up symptoms creep in. Joint pain, fatigue (not your normal baby-sleep-deprived state of mind), mental confusion, and twitches.

If so, how severe has it been, and what are your limitations?

After my second baby, I was diagnosed with Lyme and within a few weeks of finding out, I started having seizures for the first time. But before that, I was debilitated enough. The joint pain was manageable (meaning I could work through pain) but the fatigue was impossible to manage. There really isn't anything you can do about being so fatigued you can't move. I was confined to the couch or bed and my two littles had to be cared for by loving relatives and good friends who would come to the house during the day until my husband would get home from work.

What was the hardest part about pregnancy with Lyme Disease?

I think just not feeling well but having to care for another child and thinking that you'll have TWO soon and now sure how you'll feel physically after the birth.

What is the hardest part of being a mom with Lyme disease?

The hardest part of being a mom with Lyme disease is the physical limitations. Most moms have an instinct on how to balance life with one or more children alongside the normal requirements of home or work life--multitasking. With Lyme, I found that I went from someone who multi-tasked very well, to someone who could NOT do more than one thing at a time and could only really BARELY do the bare minimum for my kids (feed, change diapers, and put down for a nap). My sole focus went from being my kids' mom to being someone who could barely even care for myself. The GUILT that comes with that is almost unbearable. You feel as though you aren't good enough for your kids and that they are missing out on a normal childhood; wishing you had the energy and state of mind to read to them, enrich their little learning brains, and giving them the physical loves and hugs they need. I find myself needing to tell my 3 year old multiple times a day, "No, you can't sit next to me, you need to sit on the other couch" just because of my pain level. And it kills me every time. I try to take advantage of any "good" moments I have during the day to encourage, speak kindly, and give hugs to both my girls.

One of the toughest decisions my husband and I had to make was to send our oldest daughter (only 3 1/2) to stay with her grandparents for a month so I could get the rest I needed before making a big move across the country. Thankfully we felt comfortable with my parents caring for her and trusted them, but still, it was hard to be away from her (they lived out of state) for that long. But it was a wise decision because my body was able to get some rest that it needed at the time.

Do you have help when you need it? In what ways were you able to reach out for support, and have you been successful?

Most of the time we have had help when we needed it. When my husband was deployed to Iraq, I was at one of my sickest times and my family really stepped up to help me. Even some close friends would step in to chop veggies for that night's dinner if my wrist joints hurt too much to do it or even just stop in to clean my bathrooms or do other various household chores every once in a while.

When my husband was home and a year or so later, I became really sick again and we found that our church friends really served us with earnest hearts. They found time in their busy schedules to come babysit the girls while I lay in misery on the bed or couch, or made dinners for us since my husband would get home too late to make a meal for us (I was too weak and fatigued to), or even just come and clean the house for me every week or so.

We have also had really supportive family even though they live out of state. They have flown multiple times to stay for weeks at a time to be "live-in" help for us. We have always been honest with them as to just how bad my illness is and they have never been unsupportive or questioned my Lyme disease. Even with conflicting information out there, they have always trusted us and seen with their own eyes just how bad this illness can be.

Looking back, would you have done anything differently (treatment courses, outlook, doctor communication, or would you have waited longer, for example)?

I think in my case, I had a gut feeling Lyme was the culprit for my sickness but I was so scared of it that when I was initially tested and it came back negative, I just accepted that. But deep down I knew it had to be Lyme and I wish at that point I had sought out wiser LLMD who could have diagnosed me properly. If I had done that, I MAY be feeling better today. But I know God has His plan for my life and sickness and He has me in this season for a reason. I definitely have grown a lot through it even though it's the hardest thing I've ever had to go through.

What's the best part about being a mom? Are you still able to enjoy motherhood even when you're feeling ill?

I love that even though I am feeling rotten, I get so much joy out of both of my little girls. My 3 year old is walking entertainment and I find myself writing down multiple quotes a day to tell her dad when he gets home from work. She makes me laugh all day, even when I'm feeling my worst. And my 10 month old is all smiles most of the time and I just love enjoying both of their personalities. Even when I feel my sickest, I can still enjoy their cuteness. My children bring SO much joy to my life that I do believe it keeps my spirits up even though my physical life is down. I've never regretted having my girls even though I'm ill.

How was your experience with doctors and hospitals? Were they accommodating? Did they understand your Lyme?

I've only had to mention Lyme to a general practitioner a few times because of how recently I was diagnosed. But the time I mentioned it to my doctor a year or two before being diagnosed, he tried to convince me that it couldn't be a possibility even though I had been bitten by a tick and gotten the bulls-eye rash. But, being a humble man, after I explained what I knew of the disease, he was willing to test me; it just wasn't the right test.

Now, trying to get a general doctor in the new place I live, was more nerve-wracking THINKING about it and whether I was going to be met with kindness or animosity than it was actually meeting with the new doctor. I was blessed to find a doctor who didn't know much about Lyme and felt compassion for me seeing me in a wheelchair at such a young age. He said he was willing to work with my LLMD and also said if there was anything else he could do for me, he would.

What advice would you give women who are considering having a baby?

I guess I would give the same advice I'd give to anyone considering to have children -- make sure you're ready for all the work it takes. It truly takes up every ounce of your body -- especially those first 2 months!! Know that having a baby is hard and even more so when you're ill. BUT -- it also is one of the greatest joys. You'll never regret having children. And I recommend having a great support base as you'll most likely need help. And most definitely accept help when it's offered....this took me a while to do but as I've lessened my pride I can see just how much I truly need/needed it.

As far as the possibility that Lyme can be passed to your children -- well, in my case I didn't know I had it when I had my children. But I am here to say that both of my girls are really healthy. We do suspect my oldest MIGHT have Lyme (only because of one symptom so far) but according to my LLMD, we wouldn't do anything about it until more symptoms arose and all other medical tests were exhausted. He said not to get stuck worrying about every little ache and pain but to let her grow and that we will "know" what to look for and when to seek help.

To learn more about Heather and follow her Lyme journey, see her blog, Today I Feel Exceptionally...

Will Lyme Pregnancy Make Me Feel Like I'm Dying?

2011-01-17T21:07:00.004-05:00

I'm not going to lie--the first trimester with Wyatt, my first baby, was TERRIBLE. I had the worst morning sickness, my Lyme symptoms flared up, and I was in bed for the first 12 weeks. I went totally off my Lyme diet, because the only food I could keep down was mashed potatoes, morning, noon, and night. I was achy, Lymie, whiny, and I'm sure my poor husband wanted to jump out of a window after having to tolerate me.

Second trimester was cake compared to the first. Nothing special to report there--I even started to enjoy pregnancy.

Third trimester started out great, but at 35 weeks all hell broke loose and I was in some serious trouble. The Lyme symptoms were unbearable-- I was twitchy (and the tics were constant), my limbs went numb, and I could barely walk. Don't get me started on the bone and joint pain and vertigo. I ended up being induced at 36 weeks, because according to my OBGYN, keeping the baby in there "would be cruel torture" (to me, not the baby).

Don't get too scared--the pain didn't last forever, and the symptoms lessened almost immediately after birth. By the time I went home from the hospital, I was wiped out, but I no longer considered jumping out the window after my husband.

Fast forward a bit, and it's all water under the bridge. I am thrilled to be doing this all over again, and I mentally prepared myself right away for some rough times ahead.

Here's where it gets interesting:

You know how they say every pregnancy is different, and you never know how you're going to feel?

I. FEEL. AMAZING.
Not just good. AMAZING!

I don't know why, and I realize that it could all go down the toilet in the blink of an eye, but oh my god, at (nearly) the end of my first trimester, I'm doing more and feeling better than I have in years. All while caring for a six-month-old.

So if you had a nightmare Lyme experience during your last pregnancy, it doesn't necessarily mean your other pregnancies will be the same. I would never have believed that if it wasn't happening to me. I actually feel like I have somewhat of a life back. Granted, I need lots of sleep, and I nap every chance I can get, but the improvements are astounding.

This is simply a case where pregnancy is masking the Lyme symptoms.
And though I'm way too cynical to get fooled so easily (there will surely be some tough times), I'm just enjoying this moment.

Mostly, I'm enjoying being able to tell you that it is possible to get through a first trimester and actually feel great.

Now, if someone could invent a pill that takes rid of cravings, that would make my life complete. Something tells me that Cheetos aren't Lyme friendly, but I'd kill for some right now. Gross, I know.

Breastmilk/Formula Feeding Update

2011-01-17T20:15:00.006-05:00

*Above: The healthiest, strongest baby on the planet! Kidding. Sort of.

Couple of updates: I received a bunch of requests for more info on breastmilk testing, and for more info on my friend who just had a baby very recently and had decided to breastfeed. I'm sorry to say I can't post much on either yet... BUT

I last spoke with my LLMD's PA, and sadly, she didn't seem very knowledgeable about the breastmilk testing at all and offered, "Regardless of testing options, I don't think Dr. ___ would recommend breastfeeding to you anyway."
I couldn't get an actual appointment with my doctor until February 16th, so please hang in there.

There is one person who knows how this all works, and that's my friend with the new baby. From what I know, her little one is absolutely perfect and healthy (and cute as a button--she sent me a birth announcement!) but as much as I want to hound her for information, I have to respect that she is a very new mom, and her priorities involve getting settled and healthy, and of course spending time with her new family.

In the meantime, I ordered the milk testing kit from IGeneX (I might have mentioned that in a previous post--my brain is fried as usual). I'll post pictures and info soon, I promise.

As for me, I feel comfortable sharing that I am a proud formula feeder--it has worked out well for us for a few reasons:

1. In the beginning bottle feeding was less stressful on my body and by not breastfeeding I was able to rest at night and heal faster (nights up with a newborn are treacherous, whether you're sick or not). I know, "Why not pump?" Because it's a pain in the ass (and the boob), and I know this might make me sound selfish, but I swear, my intentions have always been to give my son the best, most normal childhood possible, and if my health and sanity are at stake, no one is happy or feeling normal at all.

2. There's no chance of my passing Lyme on by not breastfeeding. I'm not sure whether this is a legitimate fear--there are a bajillion different opinions. It's just one less thing we have to stress out about.

3. For all of you fearing that formula kids get sick more frequently or aren't as healthy as breastfed kids--I haven't seen that. Wyatt is an ox. Knock on wood, he has not gotten sick yet, and I'm even thinking that he SHOULD get sick at some point so his immune system can get more exercise.

4. When nosey people ask me if my kid is breastfed (yeah, they really do ask sometimes), I just lie and say yes because it's much easier than feeling like I have to defend myself. One lady at our local farmer's market responded, "Oh I can tell--he's such a strong healthy baby!" And I was like, "Ha! Sucker!" No one can tell the difference. Really.

5. Most important to know: My baby is well fed, happy, and meeting all of his milestones early even though he arrived a month ahead of schedule. So no, formula does not make dumb, slow, weakling babies. If I hadn't been able to take the medication I needed to start beating this Lyme, I would have felt and acted like a dumb, slow, weakling mommy. That first month was ROUGH. But the medication switch made the biggest difference in the world, and it allowed me to care for my baby in the best way possible.

Newbaby (that's it's name for now--original, I know!) will be formula fed as well. Done deal. I'm not even stressing about it this time around.

I can't say enough that I am not trying to push a decision on anyone. There are some women who are dead set on breastfeeding, and that's awesome. I don't expect everyone to share my opinion. PLEASE do what you feel is best in your heart and what works for your family. The only reason I'm mentioning this is because when I was first searching for Lyme pregnancy info last November, I had NO IDEA what anyone did when it came to ANYTHING.

So this is just a note about what I do when it comes to feeding. It's just one way to do it. So far it's worked out beautifully. If you have other feeding experiences to share, please leave a comment. We are all searching for answers, and your opinions really do help.

First Ultrasound

2011-01-04T21:26:00.001-05:00

We have a heartbeat! Due date is August 18th. Thanks for the prayers and good wishes, everyone!

The Long Wait

2011-01-04T15:37:00.003-05:00

Tonight's our big night. In just four hours we find out if there's an actual baby growing inside me.
I keep looking at the clock, wondering what the hell kind of ultrasound tech only works evenings--I was ready to know the second I opened my eyes this morning!

I'm 50% hopeful, 50% already saying, "Don't worry, if this doesn't work out you can always try again when you're actually prepared."
Honestly though, as much as I've tried to play it cool, I'm attached to this little life, and I hope with all of my soul that we see a heartbeat tonight.

With Wyatt, I had every symptom in the book and then some. Seriously, I was a hot mess. This time around I have NO symptoms. In fact, I haven't even had any Lyme symptoms (for the first time in years). Not that I want to complain about that--I just feel like it's too good to be true. I've read and heard about how symptoms of painful, chronic conditions are masked during pregnancy due to the increase in hormones, I just didn't think it could happen to me. Am I just lucky for the moment, or am I not experiencing symptoms because there's no baby in there?

I guess we'll find out soon enough.

Please keep your fingers crossed for us.
Hoping to report good news shortly.

Lyme and Worrying About Miscarriage

2010-12-26T18:59:00.005-05:00

I am a miscarriage magnet. In the past five years I’ve had five; most ended super early and they vacated on their own, but the last was a set of twins that stuck around a while before I needed a D&C, and I was quite attached to them. OK, that’s an understatement. My world was turned completely upside down for a good while, and the only way I was completely able to move on is when I conceived again and carried a baby to term.

Whether it’s right or wrong, I don’t think much now about the babies I lost. That wasn’t always the case, but when I was finally given the gift of a healthy baby, I felt that the fulfillment I got from being his mother was plenty enough for me, and I’ve been content ever since I had him.

Sometimes in my thoughts I can reduce the miscarriages all the way down to simple balls of cells with chromosomal abnormalities--defects of nature--and that my grief over the losses was based solely on my own disappointment (I soooo wanted to be a mom and I had my hopes up for nothing). Sometimes it’s not that easy. Or other times, if I’m feeling “cosmic”, I view them as souls that weren’t ready to sign on for the specific life my husband and I would have provided. I even recall my husband saying, “It must have changed its mind-- it signed up for the job but then it read our file and was like oh hellll no, these people are nuts! But it’s OK--someday we’ll get a tougher one who can handle us, and that one is meant for us when it’s ready.”

Regardless of how normal or abnormal my husband’s and my coping mechanisms are, I feel like there is one miscarriage thought most of us Lymies have in common, and that is the heart-dropping-to-your-gut feeling when you discover you’re miscarrying and you immediately curse your body for failing (yet again).

I think it’s a given now, even to the skeptical doctors, that Lyme and Co. can cause miscarriages and fetal abnormalities. We see this a lot in women that didn’t know they had Lyme and had trouble conceiving and/or carrying... it seems to click with them once they finally get a diagnosis: “My whole system is shot and infested with bacteria--no wonder I couldn’t carry a baby.” And that’s when the guilt, anxiety, disappointment, depression, or whatever you want to call it sets in, and what all of those words really mean is, “Lyme is ruining my life, my partner’s life, and now it just ruined my baby’s.”

For the most part, these miscarriages happen very early on--(though I’m sure people would be quick to report some rare exceptions), and the further along you are in treatment, the better your chances of a successful pregnancy. Of course, this is why the doctors stress pregnancy-safe antibiotics ASAP. Some (not all) will even treat your pregnancy as high-risk and will take extra precautions to make sure your baby’s growth is monitored from the beginning.

Some might disagree, but I feel like many of us are quick to blame all miscarriages on Lyme Disease, much like every ache and pain some of us experience is attributed to the disease as well. Is it ever possible to just have a bad headache without it being a cranial nerve flare-up? Could the bloated painful belly be due to the fact that you ate a ton of ice-cream and you’re on dairy overload? Can a miscarriage just be a miscarriage? Sure it can. After all, early miscarriages happen so often in all types of women, Lyme ridden or not (according to the American Pregnancy Association, there’s a 15-20% chance in healthy women). But unless the fetus is tested for spirochetes, there’s no way of telling for sure.

I have to admit that I’m incredibly afraid of a miscarriage right now, just based on past experience.

Does this have to have a bad outcome? Probably not. My hormone levels are rising as they should, I’ve already started getting morning sickness, and I’m cranky as hell. I mean, reallly cranky. Plus, I’m bloated beyond belief, my boobs are huge and they hurt like a mofo, and toothpaste is still disgusting. To me, that indicates all systems go.

But as you know, it’s hard. You want to get excited because this really is one of the most greatest experiences on the planet, but you’ve seen (or heard about) the outcome for many with our disease.

Lately I find myself superstitious when I normally pretty level-headed. For instance, I’ll tell myself that if I get rid of my old maternity clothes, this pregnancy will stick due to Murphy’s Law. I can’t even start thinking of names yet, unless I consider “NewBaby” a name, because that will surely lead to another miscarriage, and it sucks mourning something you’ve already named. I’m already expecting dooms day to happen because I’ve shared all of this info with you before the recommended 12 weeks! (Trust me, I struggled over when to post about the pregnancy but figured I’d tell you all if I miscarried after the fact, so I might as well include you on the pregnancy journey as it unfolds.)

I’m scared, as I know many of you are, because a lot of you have experienced the same kind of loss before.

But you know there is always a hint of hope in these posts:

If we let our fears about the past stop us, we will never have children to love. Quite frankly, I can’t imagine life without my son, and each of those miscarriages was worth it to get him in the end. Will it be 12+ weeks of self-inflicted torture in the beginning (OMG I haven’t felt like puking for over an hour!--am I still pregnant?!?!)? Most definitely, and if you have a cure for that, please share.

For now, I will sit here and eagerly await the first ultrasound (January 4th), blowing things out of proportion, and then talking myself down to a more optimistic, rational state. Seriously, if you’re scared of Lyme pregnancy, you’re not the only one. We have a lot at stake here, because our health is so unreliable and we are conditioned now to expect the worst. But life only happens when we give it a chance to, right? I guess I’d rather take the risk and be nervous about a miscarriage than regret the time I spent wondering what could have been. My fingers are crossed for all of you in the same boat right now.

And hey, Lyme moms: please share how you’ve gotten through this anxious time in the past. Also, if you’re a nervous, newly pregnant Lymie, go ahead and express your fears here if you like. Knowing that we’re not alone in this is comforting.

*Note: I’d like to share statistics and studies about miscarriage occurrences in Lyme patients, but honestly, whenever I research these findings I just get pissed off. There’s so much conflicting info out there, and I refuse to be part of the group of Lymie fear mongers on a mission to prove that Lyme is going to kill your fetus before you’ve even thought of conceiving it. Most of these studies were done on mice anyway, and I’m not comfortable believing any test that’s not based on humans.

Lyme Pregnancy Surprise

2010-12-25T23:18:00.003-05:00

Just two weeks ago I had a hard time deciding what to do with this blog. Wyatt is now 5 months old, I barely have time to write as much as I want to, and as much as I’d love to devote all of my free time to Lyme pregnancy research, I just don’t have it to spare.

I entertained idea of starting a Lyme parenting blog (which I will do eventually). Then I told myself to stop whining and write two blogs--one for pregnancy and one for parenting. And then I finally got frustrated enough to say that maybe it’s run its course, it’s time for this journal to end.

And then something weird happened. One morning last week I made my usual egg-whites for breakfast. They tasted off, and by the time I was 3/4 finished I was ready to hurl. I had to spit out my last bite. Nothing like bad eggs first thing in the morning, right?

The next day my husband lumbered down the stairs and grumbled good morning after soothing a cranky teething baby all night. I don’t even think he opened his mouth wide enough for real words to come out, but I could smell from across the room that he’s just brushed his teeth. Mint. Gross. Gross? Gross mint and and an overwhelming wave of nausea?!

Ohhhh, this was way too familiar.

Between the Lyme symptoms and caring for an infant, I can count the number of times I’ve had sex on...well...I’m actually too ashamed to finish that sentence, because it’s so lame. But all it takes is one time, right?

I ran to the dollar store and bought 7 pregnancy tests because I’m weird like that (whatever--they’re a dollar). I peed on four of them. Guess how many came out positive? Oh yeah.

Remember that part in the movie Juno when Ellen Page pees on the stick and shakes it and the guy tells her it’s not an etch-a-sketch and you can’t erase it (or something to that measure)? That was me.

And then it hit me: Holy crap. I’m pregnant! YESSSS!!

And then it hit me again: Oh God, I’m pregnant. I’m still fat, sick, and exhausted from the first one! I’m officially ruined...

Back to, YES! Maybe it will be a girl this time!

For hours I experienced an emotional spectrum ranging from blissful elation, all the way to sheer panic and fear, and quite honestly, some quick moments of dread. In the end, elation won, but I do realize that I will be viewed as insane by most of the community.

And so my question regarding what to do with this blog resolved itself.

I’m friggin’ pregnant.

So here I am, (happily) signing on for another nine months of experience and research, all of which I will share with you lovely Lymies.

Now that I know what I’m dealing with this time around, I hope to enjoy this pregnancy more (as much as one can enjoy pregnancy, anyway), and I will use this opportunity to grill every doctor I come in contact with for useful information for all of us.

Merry Christmas, everyone. Hope your holiday season was filled with good surprises too!

Sharing the Love

2010-12-20T22:01:00.005-05:00

If you like snail mail and you're tired of only finding past due medical bills in your mailbox, then this post is for you.

I love that we're becoming such a great community here, and the support we all give each other is much appreciated.

If you'd like to continue the warm fuzzies and get on the LPJ holiday card mailing list, Wyatt would be thrilled to send your family a very special season's greeting.

Just email your name and address to lymepregnancy@gmail.com and we'll get one out to you.
Don't worry, your information is top secret and will never be shared with anyone.

Thank you all for reading! Hope you're feeling great and are enjoying the holiday season.

-Sara, Mike, and Wyatt

A Short Break

2010-12-12T22:07:00.003-05:00

Just a note to say I'm still here, and holy crap, I have a lot to say. Between reader stories, testing instructions, personal updates, and a few surprises, the majority of my day is spent thinking about how much I have to catch up here.

I'll start back up again shortly--I'm usually not this pokey, but I really had NO idea a four-month-old could require so much energy! For the record, I'm typing this one-handed because I have an over-tired baby in my arms, there's a puddle of spit-up in my lap, and you don't even want to know what time I woke up this morning.

All is well and we're making progress. Please stay tuned for the latest adventures in Lyme Pregnancy. I promise, it will be worth the wait.

Lea's Story

2010-11-15T12:57:00.004-05:00

Lea emailed me about a week before I gave birth. I was so unbelievably nervous about the events that were about to take place, and I was terrified that I was about to become an example of a horror story. Up until Lea emailed me, I'd received a lot of encouragement, support, and a bunch of questions, but I hadn't actually heard from a new mom who was feeling pretty good after delivery. Lea was a blessing. Her email was short, and to be honest, quite unexpected--she just wanted to tell me that she'd recently gone through the pregnancy experience after having chronic Lyme and she thought she'd let me know that all went well for her and her daughter. Most importantly, her little girl was healthy and "awesome." Hearing her success story gave me hope, and I hope it does the same for you. Here it is, in a nutshell:

I contracted Lyme and Babesia while camping in Utah in the Spring of 2008. I knew immediately something was wrong, but it took six months before I found out what was wrong with me. A week after returning home from camping, the right side of my body became numb and tingly. I was having hot flashes, vertigo, and nausea. I went to the doctor who said he was suspecting that I had Multiple Sclerosis. I saw specialist after specialist, who all concluded that my symptoms were “all in my head.” Luckily, I researched all of my symptoms, and found an LLMD.

I treated Lyme and Babesia for over a year until I felt I was about 90% well. We spoke to my LLMD who said I could start trying to get pregnant. I was still taking medications that were unsuitable for pregnancy when I found out I was pregnant in September of 2009. I was still experiencing numbness in my limbs and face and vertigo when I became pregnant. I had horrible morning sickness and a very rough first trimester. After that, I still experienced symptoms, but to a much lesser degree. About two weeks before I delieverd I experienced a surge in symptoms, and my LLMD upped my medication. I was on Omnicef 900 mg and Zithromax 500mg, and then switched to 900 mg of Omnicef after I delivered. I also received two shots of Rocephin while in the hospital. Surprisingly, my OB/Gyn and all the doctors I encountered either were interested in Lyme or didn’t really care. I didn’t encounter any difficulties, and was referred to a high risk specialist to monitor my pregnancy (which just meant that I got really cool pictures of my babe in utero!).

My delivery was great. I chose to deliver without any medication because I am terrified of anything in my spinal cord, especially after experiencing numbness in my extremities! My water broke naturally and my labor progressed normally. I delivered my daughter vaginally and did not encounter and difficulties. Recovery was as easy as it could be! The hardest part of recovery was the first three months of my daughter’s life due to lack of sleep and little help.

My daughter has tested negative for Lyme, but I still worry. I think that is the hardest part about being a mom with Lyme. I worry everyday that I may have passed this to her. My LLMD and I decided that since I was doing so well during pregnancy and had few symptoms, that I could breastfeed. I felt the benefits outweighed the risks, but I don’t know what I would have chose if I was really symptomatic before I delivered. My daughter has met all her milestones on time and is a very alert child. She is pretty awesome!

Right now, I feel pretty good. I still get episodes of vertigo occasionally, but it is manageable. I am still on Omnicef twice a day, and I take fish oil and probiotics. I feel worse when I am really run down, but I somehow make it! Overall, even though it was scary, having a baby was the best decision I have ever made in my life! I truly can’t imagine my life without her.

Thanks for sharing, Lea, and congratulations on a beautiful, healthy girl!

Calling All Mamas: Let's Get Wiser

2010-11-14T20:49:00.004-05:00

Over the past year this blog has allowed me to talk to some of the strongest, most amazing women from all over the world. All of them have had a tough Lyme journey, and all of them were either pregnant, already mothers, or considering having children but were afraid of the disease.

I've thought for a long time opening up this blog so that others can share their experiences. I think I'm finally ready to take the first step, and starting tomorrow, I will be accepting guest stories. I'll also start interviewing some Lyme mamas, because I think there is a lot of information out there from which we can all benefit.

I am not completely naive, and I do realize that there are some terrible, heartbreaking stories out there, but the one thing I really like about this blog is that it is optimistic and, for the most part, it focuses on the positive aspects of motherhood. I am not at all against discussing hardships. In fact, please share them--we'd love to know what to expect-- but while you're being honest about your experiences, I hope you will focus on how you manage to get through the rough patches.

There are success stories out there. Granted, your definition of success might mean "We're getting by one day at a time without any major catastrophes," and that's just fine.

If you'd like to share your pregnancy, birth, or motherhood experience, ask a question, or if you'd let me ask you some questions (via email so you can respond at your convenience), please contact me: lymepregnancy@gmail.com

Let's share what we've learned so far and help each other, because lord knows most people in the medical field have dropped the ball on this subject.

Hired Help for Moms with Lyme

2010-11-11T21:32:00.004-05:00

Just a quick update on the help situation:

We found a young lady on Craigslist to help me around the house two days a week. It's only for one or two hours a day, as most of our money goes toward Lyme treatment, cans of formula, and covering the little guy's bum, but oh my lord, let me tell you, if you can spare a little bit of money each week, even two or three hours are SO WORTH IT. After exploring a bunch of different options, I was surprised when the best fit for our family was a high school student whose services cost $30 a week at most. I truly consider her a blessing and would give her more if I had it.

And if I had known that my first "mother's helper" experience would be so phenomenal, I would have started this three months ago when Wyatt was born.

Today I took a shower. A really long one. But before I jumped in the tub, I listened for a bit at the door to see how she interacted with my son alone. There was a lot of singing and story reading and playing, and you wouldn't believe how much that kid laughed. She praised him, nurtured him, and gave him 100% of her attention.

I now have time to nap, do some light cleaning if I have the energy, pay bills, return emails, and did I mention take a nap?
When I came downstairs after my shower, all of the bottles were washed and my house was straightened up. Wyatt was peacefully napping as our helper watched over him.

I'm usually not one to get overly sentimental, but it brought a tear to my eye when I saw them together and I realized that he can interact at home with someone who has a lot of happiness and energy to offer. Sometimes I feel as though I'm only half present when I'm caring for my son... I smile and play with him, but I'm often focused on being exhausted or in pain, or I'm worrying about the million other things I think need to get done but don't have the energy to do. I think babies pick up on that.

Seriously, if you can swing it, find some help (it doesn't have to be paid help either). It makes everyone a little happier.

Help Revisited

2010-11-04T12:05:00.002-04:00

I’m not gonna lie: I’m feeling some guilt over not posting as often as I’d like, but to say that I don’t have time because I’m exhausted is a gross understatement.

That’s not necessarily a bad thing if you have the right mindset--the work of motherhood is rewarding, and most importantly, it forces you to get out of your own head, challenge yourself physically, and survive as best you can in the “healthy” world--because, let’s face it, that baby is not going to slow down or stay quiet just because you’re having a bad Lyme day. Parenthood shows you that there is life outside of Lyme.

Help. That’s the magic word. You will need it, and there’s no shame in asking for it. If someone offers it to you, assume they mean it, and take it. If I could have done one thing differently during pregnancy, I would have made a Help List way in advance.

Even when fully healthy people have a baby, it’s pretty standard to have family come and assist with daily stuff like meal prep, cleaning, and some baby care, especially when there’s more than one kid in the house. I’ve yet to hear of a family that didn’t welcome an extra hand. Usually after a couple of weeks, you’ve adjusted and are on your own again.

But when you have Lyme, multiply that need for help by a few months. This might not be the case for everyone, and I hope it isn’t, but expect the worst and hope for the best.

Wyatt is over three months old, and just yesterday, I was so exhausted that I had to stay in bed all day. It only happens once in a while, but when it does, I’d be in some serious trouble if I didn’t have help to call on.

Luckily, people love babies. Especially people whose children are all grown up now--they love reliving the experience of rocking and snuggling an infant. Before you even have your baby, make a list of people who would love to rock and snuggle yours. Let them know in advance that you anticipate some “down” days from time to time and that you would love to add them to your list of people to call on.

Based on a few recent experiences, I have to add that you’ll want to choose people who can get right in there without waiting for direction, especially during your first couple of weeks home from the hospital. Of course, if you’re not shy about rattling off a list of things you want done around your house, you’ll have no problems. I feel uncomfortable giving orders, so I prefer people who can come in and just do what needs to be done.

For example, my mother is an angel. If I leave Wyatt with her while I nap, I wake up to find the little guy bathed, fed, and happy. She also finds time during my nap to vacuum, wash dishes and bottles, do laundry, and once she even mopped my floor because, “it was really sticky and gross.” She saves me so much time and energy that I usually don’t have to spare in the first place.

In the end, I came up with a small list of people I can call on in emergency situations (i.e. days I’m so tired I literally can’t do anything).

On Mondays and Tuesdays my husband is off, so he can pick up the slack.
On Wednesdays and Thursdays, I have a stay-at-home neighbor on call in case I need help or I need to walk the dog. On weekends, my parents are overly happy to help out. I’m not ashamed to admit that my husband and I will bring the baby over to my parents’ house and have my mom take Wyatt for a night or two while we catch up on sleep. (My husband works 14 hours a day on his feet, so he has his fair share of fatigue as well.) Of course, we wouldn’t just dump the baby on her--we stay at the house, too, and help out. My mom also knows that she can be honest if we’ve overstayed our welcome. Lucky for us, she loves taking care of her grandbaby.

Even with the help of friends and family, I’m looking for a mother’s helper to call on when necessary--a young person who’s looking for an after-school job for a couple hours a week. To me, it’s worth the forty bucks or so a week to have an extra set of hands around the house. In reality, what it comes down to is that I will gladly pay for sleep. Sleep is crucial.

So here’s your homework assignment: Make your Help List in advance. Have as many people as you can as backup, because the suckiest feeling in the world is scrambling to find someone to come over when you’re having a bad Lyme day. Even suckier is when your brain is so foggy you can’t even think of your friends’ names! Okay, a bit extreme, but you know what I mean...

*Note: There are plenty of people looking for childcare jobs on Craigslist and your local newspaper. We found a great candidate for us and will be interviewing her this week. I also like to browse http://www.care.com/ because you can see pictures and pre-screen the applicants.

On A Lighter Note...

2010-10-31T20:40:00.004-04:00

HAPPY HALLOWEEN EVERYONE!

One More Look At Breastfeeding

2010-10-28T11:55:00.003-04:00

If you’re like me, you want all of your pregnancy decisions to be no brainers. Our treatment courses are so individualized as it is, and we’re often confused and not sure if we’re improving, declining, or doomed to live forever in the purgatory better known as, “I’m able to function, but I feel like crap all the time.” Choices become even harder when we factor in the future of a developing baby.

That said, I don’t mean to further confuse you with the following breastfeeding update:

My intent for this blog is to provide as much Lyme pregnancy info as I can, and I understand that just because something works for me, doesn’t mean it will work for others.

I’ve posted a couple of times on breastfeeding, and in the end, I made my own list of pros and cons and decided against it. My LLMD agreed and encouraged formula feeding. For those of you not interested in formula, I have some interesting news:

I recently received and email from my friend and fellow pregnant Lymie. She spoke with her LLMD about breastfeeding, and her doctor highly encouraged it. She is going to give it a try, and I think that’s great news! (Just goes to show you that LLMDs’ opinions differ greatly.) According to her doctor, “there is no evidence of passing lyme through breast milk. However, even if there are bacteria in the breast milk, it may be digested by the stomach acid. Also, if you take antibiotics while breastfeeding, you pass on the antibiotic protection to the baby.”
I don’t know why I never thought about it from that angle, but it makes sense...in the off chance some spirochetes make their way into the milk, it would be nearly impossible to survive our harsh stomach acid. Much different than passing it through the blood.

She also told me that she plans on getting her breastmilk tested. Until now, I had no idea that this was an option, though it seems obvious and I wonder why I didn’t think of it while I was pregnant. (As soon as I get more details on the testing, I will post them.)

As I watch my own son struggle with formula (it took us the better part of three months to find a formula that didn’t bother his sensitive tummy), I sometimes wonder if I should have taken the chance and gone the natural route.
(The “what-if” mentality will do nothing but drive you nuts, btw.)

I should point out that even though she still experiences some symptoms, my friend is mobile and on the mend, and therefore isn’t anticipating any aggressive not-safe-for-baby treatments after delivery. This makes breastfeeding a viable option.

She also mentioned that she plans on pumping. She’s doing it for personal reasons that are not Lyme related, but I’d like to add that it’s a fantastic way to give your baby the good stuff, yet till have the freedom to take a nap and let your partner take over if you’re not feeling well. (Trust me, there will be days where you’ll need extra sleep.)

Again, I’ll stick with what I’ve believed since the beginning: I don’t think there is a right or wrong answer to any of this, because we just don’t know enough about the disease yet.

We do the best we can, and we do what feels right. No matter the decision, these babies will be well loved and cared for.

Thank you, L, for sharing this information with us. Please update us and let us know how it goes for you. *Stay tuned for info on breastmilk testing.

Test Results Are In

2010-09-27T15:32:00.004-04:00

I tend to write in retrospect, because often times I have to work through difficult times before I can share experiences publicly. This is solely for the purpose of not sounding whiny to readers. Some weeks are just shitty, plain and simple. In time, solutions present themselves, and I like to be able to report positive outcomes if at all possible.

That in mind, I’m happy to report that Wyatt’s cord blood test results came back negative! Not a single trace of Lyme!

Yes, I’m sharing this 9 whole weeks after his birth. A failure in communication delayed the results--(it’ SO important to keep on top of all your doctors). I was told that no news was good news, so we went along thinking all was fine with the test results. Then I learned at my 7 weeks OBGYN checkup that the results never came in.

That sent me into a brief panic (OMG, what if he actually has Lyme and two months have already gone by!). After a lot of back and forth with IGeneX and the doctors, we got it all cleared up.

Three things to know:

Your OBGYN will have to sign a release form that IGeneX faxes over after they receive the blood sample to ensure that the test results are going to a “secure location,” whatever that means. Make sure the OBGYN office knows that this isn’t a junk fax (that’s where we ran into problems, as we think the forms were accidentally thrown away).

Once IGeneX receives the blood samples, it takes only 7-10 days to get results. If you haven’t heard anything by then, follow up. They’re super nice and helpful when you call.

3. If your LLMD agrees to look them over, have your baby’s results faxed to him or her as well. In the end, it was my LLMD who delivered the results, because I felt he was the only one qualified to read them properly. Note: I don’t know how the results are presented, as I haven’t seen them on paper. They could just be a simple positive or negative, in which case, your OBGYN could also share the results. I just remember looking over my initial Lyme test results two years ago and asking my LLMD to explain them because I has no idea what any of it meant. I just assume cord blood is presented the same way?

Above all, I just want you to know how helpful this cord blood test was for piece of mind. Of course, all Lyme tests can be unreliable, but an initial 100% negative reading took a huge weight off of our shoulders. TOTALLY worth it to have the cord blood sent in. If in twenty or so years we find that the whole congenital Lyme transmission thing is actually bogus like many doctors say, in the end we lost out on $250 bucks. I’d pay that once a month to be able to sleep soundly at night.

Speaking of sleeping soundly, holy crap--rest up mamas! Babies don’t care if you’re symptomatic or exhausted. I fantasize about the days when my biggest complaint was getting up a lot to pee! Good thing the frustration fades when they smile that gummy smile at you.

Breastfeeding Revisited

2010-08-31T08:55:00.006-04:00

A while back I posted my initial thoughts on breastfeeding based on my doctor’s recommendations. During a time when many women and doctors are militant and sometimes downright mean about the importance of breastfeeding, I had to work hard to get past the embarrassment and guilt over my choosing to go straight for the can of powder mix. By the time pregnancy was over and I’d weighed my options a million times, I was totally fine with my decision to have a formula fed baby.

Wyatt did fine with Similac in the hospital. The nurses were surprisingly supportive and were happy to feed him during the night so I could sleep. When the subject of breastfeeding came up with any of them, they were quick to tell me the formula was just fine and that I had a medical condition that prevented me from being able to feed him any other way. At first I was impressed by such forward thinking. Maybe doctors and nurses were finally entertaining the idea that spirochetes can transfer through breast milk? Not so much. In fact, I recommend not even discussing milk transmission unless you have to or if you want to be told that your Lyme information in severely outdated.

I soon found out that they were commenting on my upcoming medication switch, which was deemed necessary because my symptoms were so bad. I was so caught up in spirochete transmission through breast milk, I didn’t even consider that I wouldn’t be able to breast feed, because all of the medications that actually work for me wouldn’t work for baby. Something to keep in mind, especially if you have a bunch of allergies and your antibiotic/supplement options are limited: Breastfeeding might not be an option at all, even if you want it to be.

Fast forward to my first week at home. I hadn’t started any not-safe-for-baby meds yet, because I was terrified of a herx on top of C-section pain. Formula feeding was going very well, but my baby blues had started to kick in, and weird things were happening to me emotionally. Mostly, I’d get weepy at feeding time. It had nothing to do with Lyme. Nothing to do with the icky chemical ingredients I read on the back of the formula can. It was purely natural, instinctual, kind of like an animal-- Wyatt would cry for food and I yearned to breastfeed. Like I HAD to. My boobs actually hurt as he sucked on his bottle, and it broke my heart that I had all of this milk to give him, and I felt so unfulfilled measuring out the powder instead.

So I said screw it. I’m going to breastfeed him. The chance of transmission is so rare, and I’m learning more and more that I’ve been panicking for no reason, though I’d have to put off taking different, stronger doses of antibiotics. I talked to the pediatrician, who loved the idea, but I admit that I didn’t tell my LLMD because I’d get an earful. (Sometimes I choose to follow my strong instincts and not the advice of the doctor.)

I spent an hour in a hot shower massaging my breasts, trying to get the milk to come back. I thought I’d lost it, because it had been so long they didn’t even hurt any more. But eventually it came back, and I happily prepared myself for the glorious bonding experience I’d envisioned.

Wow. What a letdown.

Granted, I know breastfeeding takes practice and things would have gone better if I’d learned in the hospital and gave it time, but it was painful, and it was awkward for both of us. Wyatt latched on fine, but I swear, he didn’t like it. He fussed for a long time and then opened one eye up at me, as if to say, “WTF Mom?!”

That pressing need to breastfeed vanished as quickly as it came, and Wyatt was as happy as a clam when I gave him a bottle instead. As if to reassure me that I’d made the right choice, I had a bad symptom night that same evening and knew it was time to start taking my meds. (For the record, I’m feeling awesome now on Minocycline, which is not baby safe.)

Obviously, I can only comment on my own experience. You might try breastfeeding, do well with it, and love it. I just wanted to let you know that if you’re having guilty feelings about choosing not to breast feed (or if you’re unable due to meds), my feeling is that even though it’s the favored choice for babies, it’s not all it’s cracked up to be.

As for the idea that mother and child bond better when they breastfeed? I disagree. I’ve experienced intense bonding moments while feeding my guy his formula. We have a routine now, I’m understanding his needs, and he’s a very happy baby.

Overall, life is good. I’m happy I tried breast feeding because the need/curiosity would have driven me completely nuts, but I stand by my original decision to play it safe and stick with the bottle. Just do what works best for you and your family and follow your instincts.

Photo from Babble.com

Mental Recovery

2010-08-26T14:34:00.002-04:00

After writing about the physical concerns of Lyme pregnancy and recovery after birth, I stopped and asked myself what the hardest part of this whole process has been. I was surprised that it had little to do with the physical aspects.

Maybe I’m the only moody, neurotic mess, and other mothers cope well with the stress and worries that come with a chronic condition. I have a feeling that’s not the case, or else you wouldn’t be searching for pregnancy information or even reading this blog for that matter. The idea of becoming pregnant after a long, hard battle with treatment can drive you crazy!

From day one, I was prepared for being physically uncomfortable. Hey, pain is nothing new, right? Chances are, if you’re considering getting pregnant or you are engaging in activities that will get you pregnant, you’re feeling decent. At the very least, you’ve had times in your not too distant past where you were much much sicker.
I’m not a doctor, but I can pretty much guarantee that pregnancy will have its ups and downs, but is not going to set you back to day one--that awful time right before you were diagnosed and at your wit’s end.

That said, I was completely ill equipped to handle my emotions both during and after pregnancy. My original fears about being a sick mom who was often times dependent on others for help came true in a hurry.

When I’m having a sick day, does dragging the Pack and Play over to the couch and caring for my baby while lying down make me a bad mom? How about having my husband work an insanely long day only to come home and take care of the baby during the night because I need extra sleep? No, it doesn’t, but the guilt and feelings of inadequacy over not being able to pull my weight eat away at me.

I want to be the mom I’ve always envisioned. The mom that’s always on top of things and brings her baby out all the time to explore the world. The mom that breast feeds. The mom that dances with baby in the living room and rocks her fussy little one back to sleep in the early hours of the morning. Unfortunately, a more realistic description right now is the mom that begs her kid to stop screaming for a minute because her migraine is so bad she can’t focus.

I don’t imagine any of this will be permanent, and as he gets older I will get healthier and stronger. Just be prepared because the first month or so might seem pretty bleak as you learn by trial and error what you’re capable of and what is unrealistic.

I try to keep in mind that a baby has no clue you feel like crap. He will never remember that your house was a mess or know the difference between a solid hour of active play time or a quiet cuddle on the couch. And contrary to what Babies ‘R Us tells us, babies need very few things. They need food, sleep, diaper changes, and they to be loved, held, and kept warm.
We don’t use half of the crap we bought for Wyatt, and out of all of the rattles and little toys we received, he prefers to stare at the little man on a canister of Quaker Oats. Go figure.

It really is a simple life if we can train ourselves to see it that way, and parenthood is completely manageable if we keep the right mindset. The hard part is not giving in to the sadness and frustration that occurs on days when we just can't get into gear. All I can say is try to be easy on yourself. You'll end up doing what you can, and that will be enough.

Physical Recovery

2010-08-23T14:00:00.002-04:00

I gave myself a month to test the waters before writing this. I didn’t want to get too excited if I felt great after delivery, because we all know how unpredictable this disease can be. I also didn’t want to scare the crap out of anyone if I complained that I felt like death the first few weeks. No surprise here--it’s been a mix of both good and bad.

The first three weeks after delivery I felt pretty damn good. The sudden loss of at least ten pounds (I still refuse to weigh myself) helped my mobility tremendously (even after a C- section). I could breathe better, I didn’t waddle, and all the swelling subsided a bit. With less stress on my body, my Lyme symptoms diminished greatly, and for a lovely few weeks, we were a normal family--beaming and happy, yet entirely exhausted and zombie-like from lack of sleep. That was fine, because it seemed “normal” to me. No one sleeps the first couple of months!

Well, that mentality is what got me into a bit of trouble.

We were lucky enough to have help the first couple of weeks. My mother came to stay with us for week one, and my mother-in-law took the second week shift. My husband had to go back to work right away, so the help was truly necessary. I would take care of the baby during the day, and my husband and family would take turns doing the night shifts so I could sleep and recover from surgery.

Regardless of the night sleep, I was still exhausted. But I felt as though I was doing a good job being a mom, so when the help had to leave, I took on the night shifts every other day to help out my husband, who works hard in a hot kitchen for 13+ hours a day.

Since then, my health has declined. Even after eight hours of sleep on my “off duty” nights, I feel like I haven’t slept in days. The nerve pain and twitching came back, and there were a couple of days where I couldn’t keep up with household stuff, and I spent the day curled up on the couch with the Pack and Play set up next to me so I could easily hold, change, and feed the baby when necessary. That said, so far, even my worst days aren’t as bad as my final weeks of pregnancy, so I consider this a major improvement.

My new life hasn’t been overwhelming to the point where I can’t handle it, though I admit there have been a few sob-filled “Come hoooome, I can’t dooooo thiiiiis!” phone calls to the husband if the baby is extra fussy on one of my sick days.

I’m not going to lie. This is hard. You have a baby, and all of a sudden it’s not all about you anymore. Feeling terrible? Too bad--your baby needs you, and you can’t just pull the covers over your head for the day and sleep the pain away.

It definitely takes some getting used to, and I have the feeling my LLMD would want to kick me if I told him that I’m compromising my health by overdoing it, but I can honestly say that I am amazed at the strength I find in motherhood. I’ll even say that being a mom is helping in my recovery.

A month ago I was a lump on the couch. If I didn’t feel well, I could zone out to bad T.V., let the dishes pile up, feel sorry for myself and essentially “give up” for the day.

Yes, this is the world’s biggest cliche, but it’s true: I have a purpose now, and I have a full time job without the option of quitting. (FYI, a baby is even more demanding than the worst boss you’ve ever had.)

Now I’m out and about buying baby supplies. I “exercise” by holding 8+ pounds all day, walking the little guy around the house, and taking out the craptastic garbage bags full of diapers. I have to be upright--there are bottles to wash and make, there’s baby laundry to do and fold, “accidents” to clean up. There’s no time to let aches and pains stop you, and you end up just pushing right through it.

Personally, I feel like all of this pushing is a positive. I have a reason to get better, and my confidence grows each time I challenge myself to keep going and I prove that I can provide for my son.

I swear, once you give birth, you unlock this magical reserve of energy you didn’t know you had. I’m assuming the physical ups and downs will continue. In the meantime, I’ll continue my new drugs (back on all supplements, thyroid pills, and Minocycline for now) until I see my LLMD in two weeks to discuss the future. We’re also looking into hiring someone to help out for a few hours a day so I can get more rest in, but I’ll save all that for another post.

10 Things I Learned During Lyme Pregnancy

2010-08-08T20:39:00.002-04:00

1. It’s important to find a good OBGYN. And by good, I don’t necessarily mean Lyme literate. As long as he or she is Lyme “friendly,” (open to listening and learning about the disease), and are able to communicate with your LLMD, you’re in good shape. We went through three different doctors before we found a match for us.

2. Just because a doctor is Lyme literate, it doesn’t mean he or she will be a good fit for your family. I was lucky enough to find a Lyme literate OBGYN relatively close to home, which I’ve heard was impossible*. He turned out to be an evil monster and caused an immeasurable amount of stress and tears. Go with your gut instinct and stick with someone that makes you feel comfortable.
*LLOBGYN recommended by my LLMD. I’m not sure where else you’d go to find one.

3. There’s no need to panic. Yes, you have Lyme. Yes, it can be transmitted congenitally. No, your baby probably won’t get it if you’ve been treated in the past, and especially if you are being treated now. The internet can be a dangerous thing. The truth is, you’re not going to read many scientific based articles and statistics on Lyme pregnancy, because there simply aren’t many out there and it’s hard to weed through the junk to find good sources. Proper treatment is crucial, but pregnancy doesn’t have to mean automatic Lyme transmission.

4. Along the same line, many moms being treated for Lyme have healthy babies, but they aren’t online writing about how wonderful their lives are. Sadly, people write about health issues only when there are, well, issues. I’m in no way undermining those who have had to live with with congenital Lyme. It’s serious, it’s scary, and my heart hurts for those who have to care for sick babies. (I appreciate this even more now that I have my own baby, as I get upset when Wyatt has something as benign as diaper rash.) Just remember that there are more healthy Lyme pregnancies than you might think. We just don’t often hear the success stories.

5. Be optimistic, but expect the worst. Lyme symptoms suck. Pregnancy symptoms suck. You might experience both at once, and that is double suck. I’ve heard that some women’s Lyme symptoms disappear during pregnancy due to an increase in hormones. This wasn’t the case for me, but I hope it is for you! Just know that it might be uncomfortable, and downright tear inducing at times, but you will get through it. I would not lie to you, the second you see your baby for the first time, you won’t care about those past nine months. I wish I had more words to explain that beautiful moment. Bottom line is that it’s all worth it.

6. Don’t be afraid to say, “I can’t do it.” By the time I realized that I needed to throw in the towel, actually let my husband and family help around the house, and just submit to the T.V. or writing, or internet surfing, I was in my third trimester. And the only reason I settled down was because my feet swelled up to elephant man proportions, I was too big to really move around, and my tics set in big time. I have promised myself that when I’m pregnant again (yes, there will be another!) I will allow myself to take it EXTRA easy from day one.

7. Diet is important. I learned this by eating healthy foods in the beginning and then giving in to sugary cravings later on in pregnancy. When I was eating my super healthy Lyme friendly diet (no sugar, bread, or fruit), my symptoms were mild. When I indulged in my Pop Tart and Ring Ding cravings (gross I know--I don’t even normally like that stuff!) my health declined rapidly. Again, next pregnancy I will try hard to not give in to the sugar. I believe it makes all the difference.

8. Pregnancy = a nine month waiting period for hard treatment. Regardless of how crappy you’re feeling, most doctors will take the less is more approach when treating during pregnancy. This is for obvious reasons--there aren’t many pregnancy-safe drugs out there, and most people want to stay as chemical free as possible, as everything we take goes to the baby as well. Plus, doctors want to cover their butts. If anything happens to that baby during treatment, they don’t want to be blamed for it. The key word is maintenance during this period. After you have your baby, you can treat aggressively again.

9. You are your own advocate, and even more so, you are your baby’s. Don’t be afraid to call your doctor with any questions or concerns. At first I was timid and felt bad for bothering the office staff. After the first couple of months I realized that if I wanted any help or answers, I had to be assertive. Don’t be afraid to ask questions and demand answers if you’re not getting them. If you get resistance from anyone, switch doctors--there are countless others out there, and many are actually in the business to help.

10. It all goes by faster than you think. I swear. Before you know it, you’ll have a little one in your arms, and for a brief moment, you’ll be so happy that you won’t even remember Lyme exists.

Labor Day

2010-07-30T18:34:00.006-04:00

As you can see, we went through with our decision to induce early, and when all was said was done, it was the best decision we could have made.

I learned a lot over these past eight days. There's a lot I want to share with the hope that you find it useful when it's your turn to deliver. The truth is, I'm having a hard time deciding where to start, so I apologize in advance if this is all a bit disorganized.
I guess I'll begin with the story, and once we have that down, my future posts will discuss certain areas in more detail.

Our plan was to have the amnio to test for lung maturity, return to the hospital that same evening to have my cervix ripened (is it just me, or does that sound gross?) with a little inserted tablet used to jump start stuff down below. In theory, the tablet softens the cervix and thins it out in preparation for a pitocin induced birth.

I'd sleep and let the tablet do its magical thing overnight, and they'd start the pitocin drip at 6am the next morning. Contractions would start within an hour or two, and we'd be on our way to Babytown.

I wish I could blame the next events on Lyme, but I can't. I feel like it's important to share this, though, because I was under the impression that labor would be so painful that all Lyme symptoms would take the backseat during childbirth, and I would only focus on the dominant pain.

Here's my disclaimer: Every labor is different, just like every case of Lyme is different. My Lyme is severely neurological and goes way beyond joint pain, mental fog and headaches. Therefore, some people with annoying but tolerable symptoms might actually avoid any bothersome symptoms while delivering. Please don't be scared off by this story, because I swear, not a single bit of pain matters once you hold that little baby for the first time. For the record, within twenty minutes of first meeting our son, I told my husband, "We're doing this all again next year right?" It was the most rewarding experience of my life.

So first off, I went into the delivery room at 6am as scheduled. To my dismay, the tablet didn't work. At all. This was a surprise to me, as I'd actually started having mild contractions about an hour after they inserted the tablet the previous night. I thought for sure I'd be at least three centimeters. So it goes...

As for Lyme symptoms, there was no significant increase, but the twitches were present as usual. I was running on pure adrenaline, so fatigue was not an issue.

They started the pitocin, and within thirty minutes I was having contractions that were two minutes apart. They were definitely stronger, and I swore I'd end up like my mom, who popped out babies like they were torpedoes. The nurse told me the contractions needed to get stronger and more consistent before the party really started. So we waited.

Fast forward six hours. They checked my progress. One freaking centimeter. ONE. I was discouraged, but I still had hope. The doctor broke my water in order to get things moving, because I was complaining that the contractions were starting to get really intense, and I wasn't allowed to have an epidural or block. My neuro symptoms began to worsen, and this surprised me. My twitches were more frequent, I had muscle fatigue, and numbness in my legs. I chalked it up to being tired, as my symptoms always flare up when my body has been under physical stress.

Here's where things get interesting:

When you're in labor, you're hooked up to two belts. One tracks the baby's heart rate, and the other records your contractions. I'd officially been in "real labor" (not counting the start of labor the previous night) for 11 hours. I was in screaming pain (though turns out, I'm not a screamer--I now know I prefer silence during labor) and the nurses kept telling me, "Just wait, it's going to get a whole lot worse," because the monitor was showing very mild, sporadic contractions.
I had been told that "Just when I felt I couldn't take it anymore" was when babies usually showed up. Well, I was nearing that point. Twitches and nerve pain had taken hold, on top of contractions that seemed like they were never ending.

I was also told that I couldn't be having contractions for long periods of time and that my constant pain was probably just the baby settling. The contraction monitor was showing "nothing significant," even though I begged to differ. Fortunately for me, the evening nurse shift was about to take over. My new, amazing nurse was concerned that I was in so much pain, and she ordered a new contraction monitor that measured things internally. Just so you know, it IS possible for a traditional belt monitor to not work on some people.

She left and came in thirty minutes later as I was panting through yet another contraction. I said, "Is it possible to have a five minute long contraction?"
Her response after looking at the printed recording: "Seeing as you've been contracting for twenty minutes straight without a break in them, yes. How are you even talking right now?"

I swore the baby was about to come any second. There was no way this could last much longer. I started to get really excited, and the nurse called the doctor in. Time for a check--and then--two. TWO measly centimeters. Thirteen hours of labor. I started to cry. Like, really cry. The doctor stopped the pitocin immediately, and I yelled something about how they should have believed me earlier that I was having abnormally long contractions.

Just so you know, there is definitely a testy Sara. This Sara hates doctors, hates childbirth, HATES Lyme pain during childbirth, and in the heat of the moment will say things like, "Cut him out of me now or I will do it myself." If it's any consolation, I said please. Then I cried and twitched some more.

Once pitocin stops, contractions are supposed to taper off right away. My body decided to rebel and the contractions actually increased in intensity. My doctor, who was excellent in handling this whole situation (I should have given her props earlier--she truly was great), decided enough was enough. I was gray in the face and my blood pressure was dropping (though the baby maintained an awesome heartbeat throughout labor), and I was not going to progress. If I did, it would have been at least another nine or ten hours of labor, to which I said "Aww heeelll no."

Because of the neuro damage factor, I had to be put completely under for an emergency C-section.

I was really scared as I said goodbye to my husband. I didn't feel defeated--I was more than ready, but I was sad that we weren't going to be able to share that moment of birth together. And of course I had thoughts like "What if I don't wake up?"

He had to wait outside during the surgery. I told him I loved him and to kiss our boy for me. Then I went to sleep.

When I woke up, I waited impatiently in recovery and asked a million questions. Was he healthy? Were there complications? Who did he look like? Did he have hair? Those were the longest 45 minutes of my life.

He was healthy, cord blood was gathered for testing, his Apgar score was awesome (a 9 at 36 weeks!).
The only issue was that he was literally stuck. It took a while for the doctor to get him out, as he'd wedged himself somewhere between some bones, and it seems as though he had been there a long while. That explains the mystery aches and pains and also why he never really changed positions throughout the pregnancy. He'd borrowed his way into some uncomfortable territory.

So whether the labor lasted 15 hours or 48, it would have ended in a C section anyway! Goes to show you that you can plan all you want--your baby might have other plans!

My husband came in and we shared happy tears. Then came our beautiful baby boy. 7 pounds 11 ounces of perfection. Never in my life have I experienced so much love. As cliche it sounds, it's a love that you don't really know exists until you hold your baby for the first time. And for a short time, there was no labor or surgery pain, there was no such thing as Lyme disease or years of treatment, or worry about congenital transmission. It was just a mama and a daddy and a new baby, and life was so good.

That's my story and I'm sticking to it.
I'm off to change a diaper, but please stay tuned for info about how we dealt with Lyme in the hospital, reactions from doctors, future treatment and baby testing, and what the recovery process has been like. As always, any questions, let me know and I'll be glad to share any info I have.

Wyatt Has Arrived...

2010-07-24T22:52:00.005-04:00

Happy, healthy, and a whopping 7lbs 11oz at only 36 weeks!

Details coming real soon, but for now, I am proud to introduce our little fighter, Wyatt Robert.

D-Day Tomorrow?

2010-07-20T12:26:00.004-04:00

As you know by now, my neuro symptoms have become a huge problem during these past few weeks. The electrical surges are quite painful, the twitching is embarrassing and restricting to say the least, and the lack of sleep it all causes is not helping. I am tired of being curled up and crying in pain. Physically and mentally, I can't take it much longer.

Surprisingly, I got the letter I needed from my LLMD stating that I would have an antibiotic change as soon as I deliver the baby. This means I can have induction approved.

It's been one week since my OBGYN decided it would be best for all parties to induce labor (at 36.5 weeks), and I went for a checkup yesterday so she could confirm that this was still the best approach to take.

It's amazing how slowly some things move in the medical field. Lyme treatment approval, for example. That crap can take months and doesn't come without a fight and filling out tons of paperwork. On the other hand, you want make a baby come out? They'll have your world turned upside down in a matter of hours. "OK, can you get to the hospital for your preliminary testing in an hour?"

Ummmm, no, I can't.

So here's the deal: tomorrow morning at 7:15 I arrive at Labor and Delivery to have a non stress test which will be followed by an amniocentesis to determine if Wyatt's lungs are fully developed. It's standard that they do the amnio, even if they believe all is well, because they can't authorize an early induction (before 39 weeks) without one. They're covering their butts, but most importantly, they're covering all bases to make sure they're not rushing things.

I've read about a million posts out there from moms who scorn anyone that decides to approve the induction procedure, as childbirth is natural and you shouldn't rush nature/God/your baby, what have you. It's selfish and the baby will come out on his own schedule. These are also the women who vehemently demand that all women breast feed, and if you don't you are obviously a bad parent content with pumping your kid full of Satan's nectar. My answer to them is piss off.

You have to do what is right for you and your child, and quite frankly, I don't think any of these women have experienced severe neurological pain.
I obviously don't have experience with the whole childbirth thing, as I am a first time mom, but I already know how tricky pregnancy is when dealing with Lyme, and I don't imagine labor will be any different.

In fact, I just had to leave this blog post to take a call from my OBGYN (this is the third call so far today in getting everything ready.) She said that they've met with all of the nurses and doctors to explain my situation (I'm a sick, convulsing mess) and all agreed that a vaginal delivery would be best, BUT the anesthesiologist won't give me an epidural or a block due to my nerve damage. There is a chance that if I get the epidural, there will be more permanent damage to my nerves, and I may actually lose some feeling forever (no thanks).

If for some reason I need a C-section, they will have to put me under. I've had this news for about two minutes, so I don't know how I feel about it yet. My first reaction is that I am sad and afraid. I can't imagine not being able to hold my baby right away, and it takes about an hour to wake up after it's all over. Fingers crossed for no section. I guess in the end this is good info to keep in mind if you have nerve damage?

So, amnio in the morning. Test results come back within a few hours, and if he's good to go, I check in at the hospital tomorrow night to start the induction process.

As I type this, I am really having second thoughts about going through with this. I have huge amounts of anxiety now, and I wonder if it would just be better to suffer through the next month. I still wouldn't be able to get the epi, but my chances of a c- section drop a bit, and I wouldn't have to deal with pitocin contractions (which I hear are super hard and extra evil). But if I chicken out, it's still a month's worth of sleepless nights and painful days, so that all evens out, right? Ack!

After all of this new information, my main issue comes from the end of the phone conversation when my doctor said something along the lines of,

"I want to make sure we're prepared, so I've called two other high risk doctors in the area. They've all assured me that Lyme is not a problem for the baby, and anyone that tells you that your baby can get it has very outdated information. I even talked about it with Dr. ____, your pediatrician, and she agrees that Lyme won't be a problem for the baby."

Noooooo! You were on my team! Not that I want my kid to come out a Lyme baby, but seriously?! You now want to deny Lyme exists in infants and tell me my pediatrician will deny it as well, less than twenty-four hours before I go to the hospital to deliver? She was trying to reassure me, I know, but now all I can think of is how every single one of these doctors is part of the "enemy" camp.

I need to stop this rambling now and clear my head. I'll post an update when I come to the most rational conclusion.

Any experiences/suggestions are welcome. What would you do?

Testing Your Baby for Lyme Pt. 2

2010-07-14T09:27:00.006-04:00

I've never done any "DIY" testing, meaning, I've never had blood vials sent directly to my home with the expectation that I'd coordinate the blood draws, so I thought I'd share some updated infant Lyme testing info in case you're like me and you feel out of your comfort zone when you receive your IGeneX test kit in the mail.

Initially, I posted this on cord blood testing for Lyme.

Here's a little more info now that I've seen the kit and talked to my doctor:

This is a picture of the kit as it arrived in the mail. They send you all the packaging you need to send it right back out again via FedEx. There's a Fed Ex form in the package checked for two-day mail. Either the hospital can take care of the whole collection process when they collect the blood, or you can call the Fed Ex number posted on the mailing slip and they will come collect it for you. Just tell them that the contents are blood samples and are time-sensitive. (It says on the IGeneX package that the blood must be tested within four days, so that gives you a bit more time--your partner won't be running around like a lunatic trying to find a Fed Ex facility.)

And here's what it looks like all opened up. Two vials for the cord blood collection. Plain and simple.

The trickiest part is going through the packet of forms they send. There are about seven sheets, but you'll probably only use two of them, as they're mostly info sheets. One lists the different kind of tests and the prices (this doesn't mention test you're doing, #477, $235). It's good to look at, though, in case you and your LLMD decide to test for other things, especially co-infections. My Bartonella has flared up like a mofo lately, so we added that to the mix (at an additional cost of around $250).

Then you have the actual info form. You fill your baby's info (do as much as you can before you deliver, that way all you have to do is enter the birthday when it happens) and select the testing you want done. The infant panel #477 is an option on this form, and that's the one you definitely want to check.

IMPORTANT: I originally mentioned that you didn't need a doctor's order for these tests. That wasn't entirely correct. You don't need an order to request a test. YOU NEED A SIGNATURE FROM YOUR DOCTOR in order for IGeneX to accept the blood samples and have them tested. There's a section for your doctor's info and signature on the sheet you fill out for testing. Your LLMD can sign it or your OBGYN. Doesn't matter who orders it, as long as you can legally call them a doctor.

Finally, just to make sure that your OBGYN knows what's going on, I recommend bringing in the test kit to him/her during one of your prenatal checkups. I did that yesterday, and she greatly appreciated the heads up. She said the testing is super easy, and they do things like this all the time. For some reason, I still felt the need to justify my wanting to test the cord blood. Her response: "Well, you might as well! You could catch a problem early if there is one, and it would be a shame to waste the blood because we just throw it away anyway!"

She signed the form for me beforehand, so on delivery day there's nothing to worry about.

Once you have all of it filled out, put the entire kit in your overnight bag for the hospital so you don't forget it on your delivery day.

Surprise!

2010-07-13T20:39:00.004-04:00

First, thank you all for the support you've given me this past week. I've received a bunch of great emails and comments, and it means a lot to know that I'm not alone as my symptoms completely drive me nuts.

As I mentioned, I had my OBGYN visit today. She asked how I was doing, and I could barely keep the tears in. My response: "I try really hard to come in smiling and not be a problem patient, but I am so sick right now I can't even fake it. I can't live like this anymore."

She asked about my symptoms, about how the baby is acting inside my belly (he's still a happy, karate chopping jumping bean), and then she caught glimpse of the endless twitching.

"Wow. I've never seen you this bad before."

Tell me about it.

"Have you ever had a patient like this before (with so many neuro problems)?"

I was slightly disappointed to hear that she hasn't.

It doesn't help that she caught me on a day when I'm running on three hours of sleep (the bone pain and electricity kept me up, and I finally caught a nap after I watched the sun rise.) Sleep deprivation = extra twitchy and my eyes were little puffy slits.

I'm not trying to make this overly dramatic--let's just say I'm looking a little rough these days.

After the normal monitoring and testing, she said that my cervix is thin, but I'm not dilated yet. We talked about what was going to happen right after birth, and I relayed the info I'd gotten from my LLMD--we're limited to Zithromax for the remainder of the pregnancy, but the second this guy comes out, I can switch to something more effective for me. I told her I planned to have my bottle of Minocycline with me at the hospital (it's already filled) so I can at least start on something better right away. (IV is not an option at this time for many reasons, but mostly because I just don't want to deal with it.)

Then she surprised me:

"Living with this much pain is torture. If you can get better treatment as soon as you give birth, then I think it's time to evict this baby. "

I couldn't agree more. That said, we have to make sure baby is healthy and ready to be evicted first, because it really is all about him. OBGYN consulted with a couple of other doctors, and they agreed that an early induction would be best for all, but I need a couple of things first:

1. An induction can't get approved unless my LLMD writes a note saying that my Lyme treatment will change after I give birth. Sounds simple enough, but from the beginning, LLMD has been hesitant to help with anything baby related (a case of covering asses, I'm sure), so we'll see how that goes

2. On Monday I will have to go in for another weekly OBGYN checkup to see if I've dilated or my symptoms have improved (I can change my mind about induction at any time, especially if I'm feeling better). If I'm still a twitchy crying monster, we will proceed with an amniocentesis

3. I'll have the amnio to make sure that Wyatt's lungs are developed and all is well in baby town

4. Regardless of my pain and weakness, I'm still on board for trying to deliver vaginally, so if the little guy is able to take a big breath of air, I will be induced.

I'm assuming all of this will take a week, which puts me at a delivery of right around 37 weeks (technically considered full term.) If all moves quickly, though, we're going to be parents NEXT WEEK. (Holy crap.)

Talk about a major surprise.

To celebrate, I had my husband buy me a box of Benadryl. Hoping that antihistamine will knock me the heck out so I can rest up for the craziness that's about to take place.

I'm ready and I'm not ready. A lot to take in all in a day, but I just keep thinking about the prize at the end. Wyatt will be safe, and I can start a new treatment plan instead of continuing on this declining path. And, oh yeah, I'LL BE A MOM!

All I want is to be able to be there for my son. I want to enjoy those first few weeks of his life where everything is new and beautiful and somewhat surreal. We are almost a real family! No matter what, Lyme Disease will not take that from us.

One Sick Puppy

2010-07-12T11:42:00.003-04:00

I haven't been able to write as much as I've wanted lately, though I will report that I have doctors appointments tomorrow, which will allow me to give you some more updated information on Lyme testing for infants (I got our test kit in the mail!), as well as an LLMD's advice on what to do when you're in so much pain that all you can do is lie on the couch and cry.

Sadly, that's been my life for the past week, as symptoms have flared up to an excruciating level (dead arms and legs, clawed hands, and the lovely sensation of a very strong electrical current running from head to toe. It doesn't quit.

My fatigue is indescribable, and all I can think is, "For the love of God, please C-section me and get this baby out because there is no way I will have the strength to get through labor. At least not when I can barely move half of my body and I'm twitching uncontrollably. In my perfect world, Wyatt comes early, and the second he lets out that first amazing cry, I start popping a wide assortment of stronger (less expensive) antibiotics.

I am usually one to take a positive, optimistic approach, but I'm afraid I have nothing good to offer today. This just plain sucks.

The somewhat good news is that there's less than five weeks until my due date, if I make it that long (I swear, I am going in there tomorrow begging for early induction or C-section).

My fingers are crossed for a miraculous recovery of sorts--you know how crazy Lyme can be--you want to keel over and die one minute, and then the next day symptoms can lessen for no reason.

Actual info with less complaining coming to you soon.

Testing Your Baby for Lyme

2010-07-06T19:48:00.005-04:00

So you've devoted the past nine months to making sure you do everything in your power to keep your baby Lyme free. Safe antibiotics throughout the pregnancy, lots of vitamins and approved supplements, extra rest, but mostly prayers and crossed fingers because you know there's still so much unknown about the disease, so all you can do is hope for the best.

I'm not one to offer a strong opinion here, as I'm aware that everyone's Lyme journey is different, but I will break my rule and urge you to do one thing: Test that little babe as soon as he or she comes out. Even if the tests aren't always accurate, there's a chance you might catch those little buggers before Lyme takes hold for the long run. You've got nothing to lose but some money, and it will cost you a hell of a lot more to treat than it will to prevent.

Prior to last week, I had no idea about where to go or what to do in terms of testing once the baby is actually born.

As usual, number one thing to do is make sure all of your doctors are communicating about your progress and treatment course (even if communicating means you personally deliver updated information regarding your status and charts).

It took a little bit of going back and forth between OBGYN and LLMD, but I came across the following information
(Keep in mind, there are probably a bunch of different ways to handle testing, and your doc might offer something different. Please share if that's the case. This is just one option):

IGeneX, the same super-awesome lab that does all of our adult Lyme testing out in CA, also offers cord blood testing for infants. It's not something I've seen on the main site, but when I contacted customer service via email, they promptly responded and gave me the following information:

* The blood testing they do comes from the cord blood and is collected painlessly and immediately after birth

*You can request to have a test kit sent to your house (no doctor order necessary--you can do it yourself) by emailing customer service or calling them

*You'll want to order the test kit a bit early (maybe a month or so? You never know if junior is going to show up unexpectedly)

*For reference, the test number to request is #477

*There is no immediate charge. They will send the test directly to your house. You will enter your credit card number on the form that goes along with the blood sample to be sent in, and you'll be charged once Igenex receives the sample

*The cost of the test is $235 (A hell of a lot less than what I expected/compared to adult testing, so I'm wondering if it's not as extensive as other tests. Sorry, don't have any info about that yet.)

*Whomever delivers your baby will know in advance (have this conversation earlier than later!) to collect the cord blood in your kit

*I'm not exactly sure how blood-sending works. Common sense tells me you can't legally leave the hospital with vials of blood, so I'm assuming the hospital staff will send it out to IGeneX. Again, make sure your delivering doctor knows this in advance

*Results are sent to your home. It's up to you to report the findings back to your LLMD

*If there aren't any spirochetes found in the cord blood, chances are, the antibiotics worked! If they do find traces, obviously, whatever goes through that cord goes to baby. I hope none of us have to experience that, but if it happens, it's not necessarily the nasty, lingering, chronic Lyme that we have. My LLMD said that if it's caught early like this, we'd just put our little guy on a baby dose of antibiotics

There's always the possibility that the baby will test negative but will display Lyme symptoms later on down the road (my LLMD recommends testing the baby again a few months after birth, just to be safe), but let's stay positive for the time being.

It's good that we're not in the dark about our own disease, and we know what to look for. As you probably know already, some symptoms can be sneaky, and a two-year-old isn't going to be able to say, "Mommy, I have vertigo, fifth cranial nerve swelling, and some neuropathy!" In addition, keep an eye out for unexplained pain, developmental and speech delays, signs of Autism, and neurological symptoms.

Again, I do have faith that since we know the drill and we know what we're treating, we won't have to become the horror stories we sometimes read about. It's all about being proactive and staying educated.

I will post more info on testing as I get it. In the meantime, take care, and keep cool (it was over 100 degrees here today! No one wants a cooked baby. Or a melted mommy!)

Third Trimester Questions

2010-07-01T10:06:00.006-04:00

Parenthood is rapidly approaching now, and it seems like each day we're doing something new to prepare for our little addition. Part of this preparation has involved making sure that all doctors are on the same page when it comes to symptoms, progress, and what to expect during the birthing process.

On top of that, it's good to keep an ongoing list of those last minute (but important) questions, and make sure they're resolved before the big day gets here.

Specifically, here are some things I made sure to discuss with my doctors this week (along with their responses):

1. (OBGYN) Q: Based on my current physical condition, are we still on schedule for a natural childbirth?
A: Yes, a natural birth will be fine, and if there are complications, a C-section is a safe alternative.

2. (OBGYN) Q: Banking cord blood seems to be the latest and greatest thing right now. Is it worth it, or is just another way of sucking a couple grand out of consumers?
A: The patient response has been 50/50. Some are all for it, some people pass, because it's still relatively new. I can't tell you what to do, but I will say that they are discovering more and more uses for the cord blood every day. If you have the money, it might be worth looking into, but again, it's a personal decision. If you decide to do it, just check with your Lyme doctor to make sure the blood is not damaged from the Lyme. I'm not familiar with that aspect.

3. (LLMD) Q: I'm considering banking my baby's cord blood. What are the chances it's infested with nasty little spirochetes? Is it worth saving, or would I just contaminate my child if the cord blood use was ever necessary?
A: You can bank the blood. If you want to bank it, just have it tested first. You can request that they test it for Lyme at the hospital once the blood is collected and before it's sent out to the banking facility.*

*I am a bit skeptical about this, as we've all done the research--often times standard Lyme tests are falsely negative and not sensitive enough to pick up on the infections. At the same time, some testing is better than no testing. But ultimately, I'm still not sold on the whole banking the blood thing. From what I've read, these private companies are preying on scared new parents (no surprise there), and it's not worth it in the end because other people's stem cells are more effective anyway in the fraction of a chance you'll ever need them. Anyone have any input here? Did you bank your baby's blood, or have you decided to do so after you deliver?

4. (LLMD) Q: After I give birth, can I IMMEDIATELY switch my antibiotics to something a little more aggressive?*
*I am not breastfeeding, and my insurance doesn't cover my Zithromax Rx (which barely does any good anyway), so I'm paying over $400 a month on antibiotic pills alone. I've actually had to skip a few weeks here and there because we couldn't afford to fill the bottle.
A: Yes, you can switch back to one of the orals you were on pre-pregnancy, especially since you still have some filled in your cabinet. We can assess if another round of IV is a better option once we see how your body handles the birth. But give it AT LEAST two to three weeks on the Zithromax orals post delivery before you start thinking about more aggressive treatment. The time after childbirth will be a very important time for restoring balance and testing to see how much you can recover naturally. You don't want to rock the boat. We'll see you a month after the baby is born to further assess.

I'm sure there were additional questions, but this is what my foggy brain recalls so far. I'll post more as I think of them. Right now, it's time for my after-breakfast nap. Pathetic, I know. Go ahead and laugh, and then get back to me when you're nearing the end of the third trimester! (I've heard we should enjoy nap time now, as we will forget what sleep even is sooner than later.) I say bring it on!

Gone Nesting!

2010-06-20T14:22:00.004-04:00

Hi All,

I have a bunch of updates to share, and I also have a bunch of LPJ emails to respond to, so I'm sorry for the absence lately.

My husband and I, the gluttons for punishment that we are, decided it was a great idea to move into a new condo during my 32nd week of pregnancy. It's a fantastic, warm, and happy place, and it turned out to be a great decision in the end, but as you probably guessed, things are slow moving at best.

Boxes are stacked high, and furniture is coming in piece by piece. I will return asap to discuss the joys of third trimester Lyme pregnancy. Until then, I'm spending the next few days nesting and making a new, baby friendly home with the man I love most.

Enjoy this Father's Day weekend!

Growth Scans and Non Stress Tests

2010-06-04T19:51:00.004-04:00

We're coming up on thirty weeks now! We grow more excited to meet this little guy every day!

Everything has checked out fine during my regularly scheduled OBGYN visits, but since this pregnancy is considered high risk, we're starting some new tests that will be done every couple of weeks for the remainder of the pregnancy.

Some doctors will suggest that you have these tests, just to stay on the safe side. My insurance covers them, so I say, bring them on!

The first test is simple. It's a fetal growth scan, and it's exactly how it sounds. They do a quick (literally five minutes, much to our disappointment) ultrasound scan to measure the baby's weight. We had our first scan today and learned Wyatt is nearly four pounds! It's amazing how much different a baby looks at thirty weeks as opposed to the earlier"extraterrestrial" versions. Don't get me wrong, ultrasounds can be quite otherworldly (to put it nicely) at all stages of pregnancy... as you can see from the photo above (a front view of Wyatt's face) they still look like aliens in the third trimester. Now they're bigger, lovable little aliens that make your heart melt.

The second test is a called a non stress test. Non and stress are the key words. It's easy and won't hurt you or the baby at all. They put a belt monitor on your belly to measure the baby's heart rate and to measure if there are any contractions happening in there. They record for twenty to thirty minutes any fluctuations in movement and heart rate. They also stimulate the baby by putting a buzzer against your belly to get him or her moving, especially if the baby is sleeping. Again, much like charting growth, the purpose of this test is to make sure the baby is on track and reacting like it's supposed to.

Chances are, if the little one is in the proper growth range and is reacting normally to outside stimuli, all is well in babytown.

You doctor might skip these tests all together (depending how concerned he or she is with the Lyme). I think I'm due for 2 more growth scans before delivery, and I will go in for the non stress test every two weeks.

Personally, though I know all is well based on intuition and the fact that this kid already has a black belt in karate (he kicks like you would not believe!), I enjoy the bonding time with the little one--getting to see him and track his movements. I also appreciate that my doctor is extra cautious rather than passive. I've had enough unconcerned doctors to last a lifetime, and this change is a breath of fresh air.

Expanding Your Support System

2010-05-27T18:55:00.005-04:00

I've been debating whether this is a subject worth discussing, as it's more personal than usual, and I'm still coming to terms with this difficult decision I had to make. Ultimately, I think it's important to put my fears and pride aside and open some new doors here. I hope that if you are really struggling with your illness and its effects on your pregnancy, you will consider reaching out for help. I am so happy that I did. So here we go...

Shrinks.

I've had a love/hate relationship with them over the past fourteen years. I haven't seen one in over six, and that is solely due to my frustration and anger over being passed off and labeled as a "crazy" when doctors couldn't find the cause of my illness. I'd see doctors. They would run tests that would undoubtedly be negative for all bad stuff. They would look at my charts and see that I'd been on antidepressants for depression (caused by feeling sick all the time). They'd send me back to my psychiatrist, stating that I was so ill in the head that it was affecting my physical health. Psychiatrists would insist I had a legitimate physical condition, but doped me up on mood stabilizers anyway. I'd see another doctor. Wash, rinse, repeat.

It got to the point where I hated (with every part of my being) the medical system, the physical doctors, the head doctors, and everything in between. (I mean, how do you begin spilling your guts to someone who has been the main source of your trust issues to begin with? And don't get me started on the idiot GPs I've encountered...)

And then my husband spoke out a few weeks ago. Never one to get bent out of shape about anything, he stated, "The quick decline in your overall mental health is terrifying to me. Your mood swings are so intense, you are down more than you are up, and you seem to have lost the drive to beat this."

I couldn't argue. I did, however, break down in tears, a common occurrence these days. But he's absolutely right. What's kept me going strong for so long is that, until the pregnancy, I've maintained a positive, proactive approach toward kicking Lyme Disease. I strongly believe that if we victimize ourselves, that stress and sadness will prevent us from completely healing. I'm also stubborn as hell by nature, and there's no way I'll let microscopic organisms ruin my life.

So why is this darkness creeping up around me? Hormones? Sure. Added pressure of protecting a fetus? Definitely. Feeling robbed of the "typical" motherhood experience? You'd better believe it! My list goes on, but that's not what's important. I'm sure you have a similar mental catalog of all things unfair, uncomfortable, and unfamiliar.

And let's face it: this is all really hard! Even if you're the most positive person in the galaxy, there will be times when you have those "woe is me" moments. That's probably healthy sometimes. We need to address our sadness, and I truly believe we need some time to mourn the loss of our old selves and learn how to get along in our "revised" bodies, which will eventually help us transition into a healthier future.

I know we are all in different stages of our recovery, and we have experienced this disease to varying degrees, but one thing we have in common is that we know how it feels to be in constant pain. We know how it feels to be isolated and misunderstood at times. Some of us have supportive families and friends, while others have suffered some serious neglect. What it comes down to is that all this sure as hell takes its toll.

To be honest, I probably wouldn't have stepped foot in a therapist's office today if my husband hadn't recognized I that need help. (I guess I wasn't s stoic as I thought I was--or I'm seriously driving him nuts!)

Sometimes, even though we know we are in trouble, it takes someone else to say, "Hey, you're going through a lot here, and as much as I am here to help you get through it, it might be beneficial to bounce ideas off of someone who isn't so emotionally invested."

So, yes, I had my first session only because I love my husband. That's not true. I also went because I love my child, and I want him to be born and placed in the arms of a mother who has done everything she can to ensure a healthy, well adjusted, loving bond.

The funny thing is, my experience today was amazing, and from now on I am going for me! It's liberating to sit there and guiltlessly dump your cares on an unbiased party. Once you're not floundering and pulling ideas out of a hat as to why you're sick and a little screwy in the head, therapy is no longer a terrifying experience.

I'm lucky to say that my therapist understands the mental issues associated with Lyme. She also understands my anger toward doctors just like her--those jerks who let me slip through the cracks of the medical system for so long. And she doesn't blame me. (Where were you a decade ago, lady?!)

Again, it was a much different experience now that I have a diagnosis and was able to say, "Here's where my recent problems come from; Will you please help give me the tools I need to cope with them effectively so I can stop being such a mean, weepy bitch?" Okay, so I didn't add that last part...

We started right away, and though it was uncomfortable digging up some ugly old feelings, it's already helped me gain some perspective.

Regardless of how much of a role your pregnancy hormones are playing, if you're suffering, I urge you to reach out and talk to someone. This goes to anyone with a chronic condition--not just pregnant women. We're not superheroes. We can't carry all this weight all of the time. Lightening the load even a little makes a significant difference.

Mystery Pains--What's to Blame?

2010-05-21T15:30:00.003-04:00

Well, I had a feeling my surge of energy would be short lived. Still, I am grateful for those few days of wonderful freedom.

Tomorrow I officially begin my third trimester. My belly is growing bigger by the day (see above)! Dear, sweet Lyme and Co. has rewarded me with extra fatigue, bone and nerve pain, blurry vision, lots of twitches, and a dead right leg that seems to work and not work again depending on, well, nothing really. There's no rhyme or reason to any of this. I've also been repaid a visit from my old friend morning sickness.

Here's where it gets tricky (and here's where vague answers from doctors come into play).

Is it really morning sickness, or is the nausea and vomiting from the Lyme vertigo that's started back up again over the last few days?

Pregnancy vs. Lyme symptoms. Sometimes they feel like one in the same, so get ready to play the nine-month-long guessing game that leads to only one answer: Who knows?

My take is that symptoms are symptoms. Pain is undesirable no matter the root cause. Methods of treating these symptoms are somewhat limited during pregnancy, so as long as you stay on top of getting the issues checked out (i.e. make sure that baby is healthy and is not coming out before he or she is supposed to), life will improve in time. That's what I keep telling myself, anyway. We're strong women. We were built for this stuff, right?

I'm having the mysterious cramps again. Far different from the "normal stretching" that takes place as the uterus expands (a weird feeling but nothing to write home about). It's a very strong, pulsing, menstrual-like pain that radiates to my lower back and legs and concerns my OBGYN, though we can't find a reason for it. It puts me out of commission for days at a time, but mostly, it's just scary.

At the risk of sharing TMI, I am constantly my checking toilet paper for signs of blood, because it feels like it should be there. Paranoia? Perhaps. But it's a bothersome albeit temporary habit/fear, and I still have the yips over previous pregnancies-gone-wrong.

Sometimes I wonder if I'd be so paranoid about every little symptom if I didn't have Lyme, or if I'm just so in tune with my body after years of hyper-vigilance that I'm blowing things out of proportion. Is my mom intuition meter skewed already due to the fact that I'm deathly afraid of hurting my baby with this Lyme crap?

This is my first pregnancy, so I have no idea if those pulsing pains (called the womp womps, because if this particular pulsing pain had a sound, that's what it would be) are anything to be worried about.

My mantra this pregnancy: better safe than sorry.

I read all of the forum discussions. I know of the Lyme pregnancy horror stories lurking out there, and I don't want that to be me (or Wyatt).

I do know that both my Lyme and regular doctors agree: I have so much nerve stuff happening in my body (most of my Lyme woes are neurological with some extra love from Bartonella), it could very well be Lyme related.

All I can say is that if it's a pain that makes you nervous, there's nothing more reassuring than a quick cervix check and a heartbeat scan at the doctor's. It's worth the piece of mind, and a healthy mind is a healthy mommy and baby. (Words of wisdom from the giant ball of neurosis!)

Good Times for A Change

2010-05-12T10:06:00.005-04:00

I swear, it's not my intention to only post about Lyme issues during pregnancy as they pop up (but boy, do they pop up).

Checking in to report that I've had five solid days of feeling physically able, and I am so thankful for this new, unexplained increase in energy. (Woohoo!)

Here's where a magic answer would save a lot of people some time and trouble, but of course, I can't tell you what I'm doing differently, because there isn't anything. I'm not even sure it has anything to do with my actions at all. This disease is weird to say the least, and I could feel like I got hit by a truck at any moment.

That said, I will continue to think positively. My circulation has improved, the numbness and tingling are minimal, and the twitches only happen once or twice at night.
I'm sleeping well, my joints aren't killing me, and the room isn't spinning. I even woke up this morning and did laundry, took out the garbage, did some dishes, and let the dog out to pee. (Don't worry, I know to stop well before I reach my limit.)

My husband took me out yesterday to get a new pair of running shoes. So what if the thought alone of running right now makes me want to curl up in the fetal position? It's inspiration to keep up this good momentum, and I plan on walking for little bits at a time to build up some muscle and get the endorphins going. I figured shoes were a healthier reward than chocolate or an ice cream cone (though far less tasty). If I get wiped out, I get wiped out. Exercise will be waiting for me when I can handle it.

So, if you only get one thing from this post, please know that Lyme pregnancy doesn't have to mean nine solid months of agony (It might be eight and a half months of it, but let's celebrate any good day we can get!) Five good days and I am recharged.

This moment of peace has allowed me to put things in perspective. I keep telling myself, "Okay, a couple more months! That's nothing!" And in the grand scheme of things it isn't anything. Before I know it, this little life will need to be cared for on the outside, and I maintain that if my attitude is positive, no amount of Lyme pain will stop me from being a good, happy, loving mom.

I've said it a million times, Lyme pregnancy is hard, it's scary, and it can make healing seem like an unattainable goal at times, but THIS IS SO WORTH IT! And think of how much sweeter motherhood will be knowing we had to fight so hard for it.

Good luck on this journey, ladies, and enjoy those good days, even if they are few and far between! You can do it!

*Note: A good day allowed me to go outside and take some pictures of the spring blooms (see above). Fresh air is so good for the soul.

Hi, Metabolism, Remember Me?

2010-05-06T16:14:00.003-04:00

Nothing overly helpful to report today, though I do feel like I should share this morning's experience because it's a very real, discouraging part of pregnancy for some women.

Who am I kidding? Sometimes I just need to vent.

I had a routine monthly check-up with my OBGYN, and I made the mistake of looking at the scale. When I blurted out "Holy sh**! That can't be right!" the nurse laughed hard and ever-so-kindly reminded me that I still have a long way to go.

Some women are bothered by big scale numbers, and some aren't. All power to you if you're embracing those beautiful pregnancy "curves" people rave about, and if that's the case, no need to read any further today.

This is for the ladies who are concerned with what happens when you're Lyme pregnant, metabolically challenged, craving 10 tons of ice cream, and not able to exercise. (If you had a baby and stayed in shape, which I'm sure happens, you make me ill with envy and I am tempted to sit on you.)

I gained a whopping 33 pounds at only 26 weeks, which resulted in a crying spell in the parking lot after my appointment. I also told my loving (and forgiving) 150 lb, 6'4" husband that he's a lame*, insensitive jerk* for being so thin, and that I can't stand looking at his skinny butt*. (*=censored.)

Though it infuriated me at the time, I'm glad he laughed as my hormones took over. I swear, I used to be a very rational, well balanced person...

As I mentioned a while back, I am one of those people who takes great pride in being fit. I've worked very hard over the years to maintain a toned, "healthy" body. Before Lyme wiped me out completely, I was a long distance runner, and partly due to a billion forms of food intolerance, I was neurotic about only eating the healthiest, organic foods. I strongly believe my commitment to a healthy lifestyle is what prevented my major Lyme "crash" for so long.

I have been 100% inactive since August of 2008, and I now consider a brief walk around the store to be hardcore vigorous exercise. By some miracle, I only gained 10-12 pounds after I stopped moving around. I miss my metabolism greatly, but hey, what can you do? Sadly, any form of exercise leaves me bedridden for days.

Pregnancy weight is there for a purpose, and the little one is obviously first priority. I completely get that and believe in it! My tears come from issues that will arise further down the road, as once I pop this baby out, there's no way I'm going to be able to just go out like a healthy person and "exercise the baby weight off." I'm carrying about 50 extra pounds, and that's a lot to shed (not to mention a literal pain to lug around). Without the hope of being active again soon, I feel like I'm destined to be a slug forever.

I know some people might think this is petty, but honestly, I'm human, and every once in a while I let the fact that my body has failed get the best of me. Do I like being completely sedentary? Heck no! Who wants to lie around and eat all day?! (Wait, don't answer that...)

Typical Lyme symptoms set aside, this has been, by far, the toughest part of pregnancy. It's more than just putting on extra pounds; it's an issue about control over my own body-- I can decide what foods I put into it, but as far as activity goes, Lyme is an evil dictator. I have no control.

It's strange trying to balance the new instinctual need to be a strong, capable mother and going day to day saying, "Man, I just can't swing it today...maybe tomorrow I'll be steady enough to get off the couch."

And this isn't about squeezing into a size four (I swear, I'm not that vain); It's more of a constant reminder of my limitations. Learning to say goodbye to the old Sara and accepting the new, chubbier, slow-moving one is an ongoing and difficult process.

I know I will reach the acceptance stage eventually. Often times, I actually get there. It's just that some days I backslide and want to fight and kick and curse Lyme to hell.

Ultimately, when I'm better, I'm putting my awesome baby in one of those ridiculous jogger strollers I covet, and I'm going to run like my life depends on it!

C-Section or Natural Birth?

2010-05-04T11:43:00.004-04:00

If you're like me, you're at least somewhat nervous about how your body is going to handle "the big day." Labor. Yikes. Lyme labor--can my body even handle that? I have a hard enough time walking around a grocery store for twenty minutes--how the heck am I going to push out a baby without completely falling apart?

The biggest question for me was, what's "easier" on the body, a natural birth or a c-section?

For non-Lymies, it's pretty straightforward. C-sections, though completely normal and acceptable, lead to a longer, harder recovery. My initial thought was, jeez--I've been laid up in bed for a lot longer than 5 days at a time--but what about all the pushing? The contractions? The emotional stress of natural labor?

Both physical and mental stress can take a huge toll on the body. Until I talked to my doctor, I was all about having a c-section. Quick, painless (during the procedure at least--not so painless afterward), and predictable.

I changed my mind, however, when I spoke with my LLMD about the pros and cons to both. It really comes down to what you prefer and what your OBGYN recommends based on your health history (Lyme and non-Lyme). Here are the highlights of our conversation (I'm paraphrasing here):

Me: What's better for Lyme patients, a c-section or a natural birth?

Dr.: That's such a personal decision, I can't tell you to go one way or the other. I will say that our previous patients were divided 50/50. Half had natural births, half had c-sections. There was no difference in relapse rate; all of the moms and babies did just fine. So again, it's a personal choice.

Me: That's good, but a little vague. How about this... pretend you're pregnant and about to have your baby. Which would YOU choose?

Dr: Nice try. I'm not going to answer that. Just keep in mind that regardless of whether you have Lyme, the body will heal much faster with a natural birth. Natural is stressful on the body during delivery. A c-section means a longer, more stressful recovery.

Me: I really want to have a natural birth, but I'm afraid I won't be strong enough! I have a hard time going about small day to day stuff--what if I don't have the strength to push this massive baby out?

Dr.: You're not considering the forces of nature. Trust me, your body is going to do what it's meant to do. You will be so focused on contractions and the labor process, you won't have time to think about strength or whether you're well enough to do it. That baby is going to come out regardless of how strong you are. You're just there to help it along and tolerate the motions. Nature really does take over.

Me: So you recommend a natural birth then?
Dr: I'm saying you can do it just fine.

Me: Did your other pregnant patients carry to term?

Dr: Yes, all of them did just fine. As long as you are taking good care of yourself and you are taking your antibiotics, you can treat this as a normal pregnancy. The problems you read about occur mostly in women who were undiagnosed prior to conception and during pregnancy. Plus, you're closely monitored, so your OBGYN will be able to tell early on if there are problems.

Me: What are my chances of a huge relapse after childbirth?

Dr: Well, it could happen. A lot of women are fine throughout pregnancy and don't even have Lyme symptoms at all, and then they crash after the baby is born. This is due to physical and mental stress, as well as the sudden drop/shift in hormones. It usually doesn't last more than a few months, and you certainly won't go back to the bad state you were in when you first started treatment. Consider it a flare-up. We're going to keep you on antibiotics for a while (and maybe adjust the dosage)after the baby is born to try and keep you from crashing. At the same time, you might not be affected at all. It's impossible to tell right now. Just be prepared for it, and make sure you'll have help around the house.

Me: And if I go with the c-section?

Dr: I would tell you the same thing. You might have a flare-up, you might get along just fine after the initial surgery recovery. I'd treat you with antibiotics just the same as if you have a natural birth. Both delivery methods lead to successful births.

So there you have it. Another choice to make based on intuition and personal beliefs (though I have a feeling most OBGYNs will have an opinion on the matter, but at least we know what one LLMD thinks). The good news is, either choice has proven to yield successful deliveries. If you've had an experience with either, please feel free to share!

Thyroid: Get It Checked, Ladies!

2010-04-28T12:29:00.004-04:00

It occurred to me that my main focus has been on Lyme Disease as a whole (including all of those lovely co-infections). I've tried to keep posts non-specific, as not to exclude anyone. Plus, I'm only super familiar with the co-infections I have, and I try to only report on areas in which I am confident.

That said, there are a whole lot of other specific things that can go awry when you have Lyme. Today, I'm most interested in the thyroid.

As you probably know, many patients end up with hypothyroidism as a result of years of undiagnosed Lyme. I found out the hard way that pregnancy can affect the thyroid even more, regardless of whether you're on medication.

When I visited a high risk OBGYN a couple of months ago, he asked me what my new thyroid tests showed. I just shrugged and said, "What new tests?"

I've been on the same dose of thyroid medication for two years, and it hasn't failed me yet. In fact, I'm surprised at the difference it has made in my overall level of function. I'm not going to lie--I've only been tested once since then, and it was over a year ago.

He told me that he's seen startling changes in pregnant patients with thyroid issues. Some had levels that dropped to well below normal; others increased naturally from the pregnancy, and the added medication actually made their levels way too high. Another one of the crazy hormonal joys we experience.

Levels have to be checked at least a couple of times during the pregnancy, because they fluctuate so easily, and too much or too little medication can harm you and have negative effects on your baby. It's a simple blood test that can be done at the same time as when you have your routine bloodwork done at your OBGYN.

I made the mistake of shrugging the high risk doctor off, because frankly, I didn't like him due to his Lyme ignorance. Then the doctors I respect recently told me the same thing, so I got tested immediately. (Ooops.) In retrospect, I should have had my thyroid checked during the first and third trimesters, just to be safe.

According to the various thyroid sites I Googled, normal levels should fall between .3 and 3.3. A few other sites say it's .5 to 5.5. My doctor goes by the .3 scale. (Don't be afraid to ask for your specific numbers or have doctors explain your results. It's their job.)

I got my test results back yesterday, and I've gone from mid-range on the scale (with medication) to a .3, which is the lowest mark considered "normal."

That said, it really does help to get tested, ladies. You don't want to mess around with thyroid issues, and the medications are safe (and very much needed) during pregnancy.

Just don't forget to get re-tested again after the baby is born, as your levels might change again.

Here are some signs that your thyroid might be a little sluggish:

* Fatigue
* Weakness
* Weight gain
* Coarse, dry hair
* Dry, rough pale skin
* Hair loss
* Cold intolerance
* Muscle cramps and frequent muscle aches
* Constipation
* Depression
* Irritability
* Memory loss
* Decreased libido

(Yeah, I know, all of these are the same as Lyme...)

Here are some signs that your thyroid is a little too busy (or your dose is too high):

* Palpitations
* Heat intolerance
* Nervousness
* Insomnia
* Breathlessness
* Increased bowel movements
* Fatigue
* Fast heart rate
* Trembling hands
* Weight loss
* Muscle weakness
* Warm moist skin
* Hair loss
* Staring gaze

Again, all can be attributed to Lyme as well, but talk to your doctor anyway if you experience any of these symptoms.

Double the Aches and Pains

2010-04-24T15:36:00.006-04:00

When I found out I was pregnant, I spent a lot of time wondering about how my body would hold up when it came time to deliver, but also what would happen when it came time to be a mom and actively participate in my child's life.

It seems obvious now, but I didn't think much about how my body would hold up during the pregnancy, AKA, how an already weakened body would magnify my symptoms as they popped up throughout the journey.

Be prepared, ladies-- backaches can put you out of commission if you're not taking good care of yourself and resting often.

I'm not talking about annoying aches that disappear with Tylenol. I've got some aches right now that make me want to kick, scream, and pull my hair out, and according to my doctor, these probably aren't going to go away soon. Here's the reasoning:

Like many Lymies, I've spent the majority of the last two years in bed or on a couch. Though I once had great posture, a strong set of muscles, and most importantly, a conditioned core, all of that went down the drain as I became unable to exercise. Muscles atrophy, stamina wanes to non-existent, and sadly, those stomach and back muscles you never knew you had under there weaken and basically leave your body like a limp piece of spaghetti.

Now, all of a sudden, your uterus is expanding to the size of Texas, and your center of gravity shifts. And all power to you if you've been able to maintain that recommended maximum twenty-five pound weight gain (especially when your Lyme takes a lot out of you and you get winded while walking, let alone burning calories by exercising.)
For the record, I'm at 25 pounds already, and I'm only six months pregnant. I'm also pretty strict with my healthy diet, so it's not like cheeseburgers and candy are doing this to me.

Take that extra weight and the uneven distribution of your girl parts, put it on top of a limp spaghetti frame, and you have one hell of a back problem. After consulting with my doctor and trying everything I can think of, here's what has kept me sane this past week:

1.) Wear running shoes or supportive sneakers. No flip flops, no heels, and no bare feet, even around the house

2.) Lie flat on the floor with your legs up all the way against the wall (your body is at almost a 90 degree angle). This takes the pressure off of your back for a little while. You can also lie on the couch or bed with pillows under your legs in the thought of being on the floor creeps you out

3.) The heating pad has been my number one relief so far. Some people say avoid heat during pregnancy, but it doesn't make me at all nervous if I keep the heat on my back and don't let my body temp raise too much. (Usually 15-20 minutes of heat does the trick)

4.) Regular recommended pregnancy stretches throughout the day

5.) Body pillows have not worked for me, but I hear they work wonders for some. If you sleep with a pillow in between your legs, it's supposed to help with aches and pains, as well as keep you aligned

6.) Most importantly, don't stand for long periods at a time. I'm lame and will admit that a long period of time for me is more than 5 minutes, but everyone has their own own limits, so just be aware of yours. I find it's better if I sit and rest for two minutes before I even start to get achy. Helps me go a lot longer, and I'm not whining by dinner time

Again, you have to go at your own pace, but this new pain has inspired me to do what I can to strengthen my muscles a bit, so I don't get my butt kicked when I'm in labor. It will also aide in a faster recovery later on.

Also, this something to keep in mind if you're not pregnant yet but are considering having a baby. Even if you can do 5 crunches a day, or just one modified "granny" push up, something is better than nothing, and you can work up to more in time. This goes without saying, but the stronger your body is, the fewer aches and pains you'll have along the way.

Of course, in the end, there's one thing that puts it all in perspective, and that's your amazing little baby. Being uncomfortable for a while is nothing in the grand scheme of things, and I'm not trying to make anyone nervous when I bring these issues up--I just promised to share the full experience of Lyme pregnancy here. You could light me on fire if it meant I'd have a beautiful baby boy. It's all worth it in the end.

Preterm Labor Scares

2010-04-17T14:48:00.003-04:00

Yesterday around 4pm I started to experience a lot of achy lower back pain. In addition, I had what felt like some pretty nasty menstrual cramps. I was feeling Lyme achy to begin with, and my brain was a little fuzzy, so I figured I was overtired and needed a nap.

When I woke up two hours later, the stomach and back cramping really intensified, and I had tightening in my abdominal muscles that came in intervals. I also started having to pee every 15 to 20 minutes.

Type those symptoms into Google, and preterm labor comes up. Scary stuff. But I've never had a baby before-- I don't know what contractions feel like, and it wasn't like I was unable to move around or breathe. So I waited it out a bit.

Long story short, I was finally admitted to the hospital for observation around midnight.

The good news is that the baby is still healthy, and I'm not showing any signs of labor at the moment. Yay for false alarms!

Ladies, if these scary symptoms happen to you, it's helpful to know that symptoms of a bladder infection during pregnancy can be nearly identical to those of preterm labor. If I had known that earlier, I still would have gotten checked out, but I wouldn't have been as nervous. Once I checked out ok in the contraction department, it was just assumed that I had a UTI.

But here's the mysterious part: After all that, my initial tests came back negative for infection. None of us are really sure why I'm experiencing the pain, and we can't speculate whether it's Lyme related, but it's unlikely.

I will say that even before pregnancy, I've been known to have a lot of problems "down there" when it comes to frequency, burning, and stomach irritability/cramping/digestion. All were due to Lyme and co-infections, so I'm not sure whether it's just coincidence that this is happening during pregnancy.

Bottom line: if there's an issue, get it checked out, even if you're unsure of the severity. And no matter what the issue, stay hydrated. Apparently, it's super important no matter what the problem is. Also, if you're lying down, make sure it's on your left side.

I'll be on bed rest for a little while until we get more cultures back, but I feel much better knowing that the baby is staying put for now.

Best part about this is that we were able to sneak in another quick ultrasound. (When you have Lyme, you get ultrasounds all the time.)

We learned two things: 1. Baby Wyatt is still definitely a boy, and he's not shy about it. 2.) His ears stick out like his dad's. While that might lead to teasing from the rest of the world, I think it's pretty darn cute. Hooray for floppy eared babies!

It's Only Life

2010-04-15T16:25:00.003-04:00

Yesterday's consult with my LLMD was uneventful. I will start back on oral Zithromax within the next couple of weeks, but I'm supposed to let my body detox from all meds a little while longer.

Not sure how I feel about that, as my health seems to have taken a nose dive this past week, but I've been assured that the second trimester is the safest in terms of avoiding Lyme transmission.

Typically, doctors are most concerned during the first and third trimesters, so I'm just going to gut it out for a couple more weeks and take it easy. (Husband does the chores while I read a book on the patio? No complaints there!)

In the meantime, I'm focusing on dealing with stress in a healthy, more productive way. Many women deal with anxiousness during pregnancy. Who wouldn't? Baby supplies and birth plans. Expanding bodies and shrinking bank accounts. Discussing with your partner how life as you know it is about to change in a major way. Are you ready? Can you handle this commitment? (Of course you can, but that doesn't mean the insecurities aren't there from time to time.)

Lymies have the added bonus of a stressful illness that leaves our physical and mental abilities inconsistent at best. I'm not going to lie. I've gotten all sorts of neurotic and stressed during this pregnancy. I've also spent a lot of time Googling things like, "Is my anxiety harmful to my unborn baby?"

The answer is, yes. Anxiety-ridden mommies have a greater chance of having anxious children. Whether that's genetic or just a learned habit from mom, I don't know. I never know what to believe with these "studies" anyway, but this particular idea makes sense to me.

Regardless of how it affects baby, we should try to live stress-free for ourselves. You already know by now that stress makes sick people sicker. It has a negative impact on even the healthiest people.

I get tired of reading those articles--"Ten Ways to Eliminate Stress," and they repeat the same things over and over. Breathe. Meditate. Get a pedicure. Exercise (yeah I'll get right on that as soon as I can feel my legs again). Sniff some scented oil (barf).

Here's how I look at it: We're obviously all different, and as much as meditating works for me, you might think it's a crock. The smell of fresh lemons might make you want to hurl. But here's what we ALL have in common: there are at least a few things in this life that make us so happy/content that we feel physically lighter and more relaxed.

These don't have to be huge, life changing things. For me, it's all about reading books on Buddhism, preferably outside when there's a nice breeze. I like taking pictures of things in my neighborhood, especially new spring blooms. I like to hug my dog, stick my feet in the lake across the street and throw rocks in the water. On great days, I have a friend over for tea or I share a "fancy" meal at home with my husband. By fancy, I mean we drink our water out of wine glasses and we use the good napkins and plates for the hell of it.

As long as you're present in that exact moment, enjoying it for what it is, your muscles will loosen up, you will take deeper breaths, but most importantly, the world will not feel as heavy.

So think about it--what are your "this is what makes life better!" activities? Next time you're stressed about babies or health, try doing one of these things you love and just be kind to yourself and enjoy the mini mental vacation.

Hey--it's only life, right?

Breastfeeding with Lyme Disease

2010-04-06T15:49:00.005-04:00

Though I don't have much to share in terms of future Lyme treatment (still giving my body a break from all drugs for another week until I meet with my LLMD), I will discuss an issue that's been on my mind a lot lately.

Breastfeeding.

The Lyme Literate doctors all say no way; my other doctors say there's no recorded proof that spirochetes can be transmitted through breast milk, and if it does happen, the chances are so slim, it's not worth worrying about.

All I hear is, "There's a slight chance you could make your kid very sick, but no worries--everything is just fine!"

Once again, I find myself having to choose between two very opposite sides of the spectrum. There's no middle ground when it comes to basic decisions like feeding. Boob juice or no boob juice. That is it. Simple, right?

The first time mom in me steps up and says, "You'd better think about this long and hard, because YOUR actions determine the health of this baby, who can't speak or think for himself. YOU are the protector."

But "breast is best!" No s***, really?! If I read one more militant mommy rant about how it is cruel and selfish to deprive a child of breast milk, I'm going to kick something. Yes, animals in the natural world nurse their young for a reason. Yes, I am remorseful and already sad about not being able to share in that bonding experience.

Breastfeeding just does not work for some families, and whatever that reason is, the mother should not be made to feel like a failure for her decision. So why am I second guessing myself about going straight to the bottle? I'm assuming it's because I haven't had much support so far, and I want to feel like I'm doing the right thing and being a good mom.

Yesterday I saw one of my favorite doctors--she's works closely with my main OBGYN (the woman I always speak so highly of). When I brought up my apprehension about breastfeeding, she was quick to (kindly) lecture me about how I needed to breastfeed. All mothers need to do it, regardless of the situation. "Even mothers with serious diseases like HIV can breastfeed because the transmission rate is so low, so stop worrying about Lyme!"

I know she didn't mean to sound ignorant or insensitive, but really?! Serious diseases? And for what it's worth, I wouldn't risk passing on HIV either, no matter how slim the chance, but hey, that's just me.

I'm aware of the benefits of breastfeeding. Babies need mom's milk to build up their immune systems and ward off illnesses. Breastfed babies have fewer colds, ear infections, childhood illnesses, etc.

I can't help but take a look back at bad years of my life, particularly the last three.

Paralysis, neurological problems, claw hands, blue feet, Bell's Palsy, wheel chairs, weekly doctors visits, anxiety, depression, thyroid and adrenal problems, severe stomach issues, allergic reactions, food intolerance, vertigo, double vision, heart problems, the humiliation of fainting in public places, trips in ambulances, excruciating physical pain that at times left me drifting off to sleep wondering, "Will I wake up tomorrow morning, or is this it?"

I'm not saying this to be melodramatic; this is very real. So, I think I just settled my own internal debate. When baby Wyatt makes his grand appearance, he will lovingly receive his very first bottle of manufactured formula. I say let him get an ear infection. Let him get five! These are minor problems we can fix. I couldn't live with myself if he experienced any of the others listed above because I folded under the pressure of critical doctors and judgmental spectators.

I'm not sure which camp is right. Either I'm completely wrong for buying into the better- safe-than-sorry group, or perhaps in the years to come, Lyme will be taken more seriously, breast milk transmission will be proven, and I will feel sad for the women who had to tell their sick children, "I'm sorry, we didn't know much about Lyme back then, and the doctors said it was safe."

I am very curious to read other thoughts, opinions, and experiences on this subject, as I'm in unknown territory here. Any breastfeeding with Lyme info (preferably scientific) is also greatly appreciated. Anyone out there have kids during an active Lyme period? How is everyone's health now, and looking back, would you have done anything differently?

Treatment Planning During Lyme Pregnancy

2010-03-30T12:56:00.006-04:00

Pregnancy is full of surprises. Many of them are amazing and somewhat miraculous, for example, the strong bond that develops when a mother feels her baby kick for the first time. I cannot explain how exciting it is for me when I'm able to feel my little one swim around in there.

Unfortunately, pregnancy can dish out a few unappreciated surprises, as well. Lymie moms, listen up: your baby does weird things to your body in terms of changing its chemistry. Normally, changes in hormones affect moods, food preferences and aversions, complexion, you know the drill... but I didn't even think about how a pregnancy could affect how I'd tolerate medication for Lyme treatment.

When I found out I was allergic to I.V. Rocephin, I was disappointed but didn't think much of it. When I had a pretty severe reaction to I.V. Zithromax a week later, I was heartbroken, as that was the last drug I could try in I.V. form due to the pregnancy. I tolerated I.V. Zithromax very well during my first round of treatment last year. I was even on oral Zithromax until I recently got my PICC line inserted at the beginning of the month. So what happened?! Why am I reacting to everything right now?

According to my infectious disease doctor, I have my little one to thank. He doesn't believe it's a full on "allergy," but more of an immune response. Even though I got hives and had trouble breathing with both antibiotics, he feels like my body is rejecting everything foreign right now (which might explain why my symptoms have been so bad throughout this pregnancy--baby is foreign and my immune system is set to overdrive.)

In addition, if I cheat on my diet and eat bread, my tongue swells and gets itchy. Same happens with some fruits, and oddly enough, a few supplements I've never had problems with in the past.

I'm not saying all of this to scare anyone. My doctor cared for 8 pregnant Lymies last year, and all of them tolerated their meds (IV and orals) perfectly fine. All of the babies are healthy with no signs of Lyme or Autism. It just helps to know that some things that work for you pre-pregnancy may not be as beneficial to you once you're pregnant.

I'm sure the body balances itself out once the pregnancy is over, but that didn't make me feel any better as the doctor apologized and pulled my PICC line out. Months of fighting, pain, and heartache to get this thing in my arm, and it was over in a 30 second flash!

As much as I hate PICC lines, I'm actually mourning the loss of it right now, as it made me feel secure in terms of proper treatment. But I don't blame my doctor's quick decision to pull the line. In his words, it was best for both parties. I'm not putting myself or the baby in danger, and he can sleep soundly at night knowing he won't wake up to a morning newspaper article about how the hospital's head I.D. doctor killed a pregnant woman with an antibiotic overload.

Ultimately, this is all just preparation for parenthood, right? From what I hear, plans and schedules get sucked down the drain once a baby arrives anyway. From here on, I'm just going to improvise, and at this point, I'll focus on the happy surprises.

It's Worth It

2010-03-22T18:30:00.003-04:00

Thought I'd share some happy news today. We had our 20 week ultrasound, and all is well! We're having a beautiful baby boy. He's a real fighter and a trooper, and I can honestly say that all of the Lyme struggles mean nothing the minute you see your little one. It has all been so completely worth it. I am in love.

Doctor vs Doctor vs Patient

2010-03-17T17:06:00.004-04:00

It was bound to happen eventually. While at an emergency appointment today, I heard the dreaded words come from my infectious disease doctor's mouth: "There's no such thing as congenital transmission of Lyme Disease. There hasn't been a single case reported, and your baby has been completely safe from the start. I ordered I.V. drugs to treat your symptoms, not to protect the baby."

If you've done your research, and if you're like me and have had over ten years of doctors falsely telling you what's wrong with you and what isn't, you hear stuff like this and your claws come out. You want to verbally bludgeon that stupid doctor and school him on what it means to have Lyme disease in the year 2010. Then, after you beat him over the head with his 1980s reference books, it's safe to leave the office and find yet another doctor.

But not so fast...

I'm learning that it's a little different with baby on board. Please give what I am about to say a chance. I wish I had figured this out months ago, because it would have saved some time and stress. (The last thing a Lymie needs, pregnant or not, is more stress.)

LLMDs are a blessing. We become comfortable speaking with them, learning from them, and trading information. For the most part, we feel safe with them, and we trust them, as they've devoted their lives to studying and treating this awful disease.

However, nothing tears that security blanket to shreds like pregnancy. How hard was it to finally find a LLMD-- someone who didn't think you were nuts? Try finding a Lyme Literate mommy doctor. From my experience, it could take a hell of a lot longer than 9 months, and by that time it's too late.

So here's my thought: just compromise a little bit on this one. Not a single one of these doctors is going to be as well versed in Lyme as you are. Yes, that's pathetic, but thems the breaks for the time being.

I also had to learn to play games to get what I wanted. For instance, instead of calling my doctor an ignorant tool today, I smiled when he told me that Lyme is not congenital and said, "Well that's the best news I've heard this year, Thank God!"

See, in the state of CT, if an infectious disease doctor prescribes I.V. antibiotics for Lyme, insurance companies have to cover at least some of it. I need him right now, and I didn't regret petting his ego when I started my new I.V. Zithromax today. (I had a nasty allergic reaction to Rocephin.)

Obviously, if the doctor belittles you or gets out of line, by all means, find a new one. But if you are just looking for someone to work along with your LLMD, and this person happens to be a bit uneducated in the Lyme department, it's not the end of the world, as long as you have a trusted doctor to fall back on.

At best, you can opt for an OBGYN like mine (it might take a few interviews and some serious searching). She knows very little about Lyme, but when I spoke with her initially, she said she understands that it is becoming a huge problem, and that she is very open to learning more. She then had me explain what I knew.

When she didn't have answers to some of my questions, she did research/reached out to other doctors and got back to me. Not once has she undermined the disease, and ultimately, she has one job, which is to make sure this little baby is safe and healthy.

Again, not an expert by any means, but she is not narrow minded. I swear, there are some open-minded ones out there (but be emotionally prepared to find the jerks who will shoot you down, too).

Here are the questions I asked while searching for the doctor who would deliver our baby:

1a. I have Late Stage/Chronic Lyme Disease. I was misdiagnosed for over ten years, and I am still in the process of being treated by a Lyme Disease specialist. My symptoms are moderate to severe, and there is a chance I will have to be treated with I.V. antibiotics. (Add your own story.)So,

1b. Are you familiar with Lyme Disease, and if not, are you comfortable with working closely with my Lyme doctor to ensure this pregnancy and baby are healthy?

2. Are you able to answer questions about the safety of (possibly long term) antibiotics during pregnancy? Are you familiar with which ones are safe for baby?

3. Have you ever treated a mom with Lyme Disease in the past?

4. Symptoms set aside, my main concern is protecting this baby from contracting Lyme congenitally. Would you be able to help me explore my options to make sure this doesn't happen? (You will find out where the doctor stands with this question, and if he or she gives you the "your baby is fine" line, find a new doctor who is at least willing to recognize the use of antibiotics as a safety precaution.)

Disclaimer: I'm not a doctor. For all I know, the secret cure to Lyme can be found in chocolate chip cookies... so please take this advice with a grain of salt as you travel down your own path toward Lyme recovery.

Let the Fun Begin

2010-03-12T13:30:00.005-05:00

I (finally) started IV Rocephin about a week ago. It's amazing how quickly things move along when you have competent doctors.

No serious reactions or side effects, which is always a good thing, though I experienced my first herx a couple of days ago. Compared to what I've experienced in the past, this one was very mild. Mild, meaning a few days in bed with intensified symptoms and a bad case of the twitches. It seems to have subsided some today.

A lot of people treat a herx like it's the end of the world. That's probably because it feels like it's the end of the world. A lot of people also mistake side effects of their meds for a herx reaction. Unfortunately, antibiotics can make anyone feel like they're permanently out of commission, especially when on high doses.

The one thing I can say is that, pregnant or not, herxing or not, you can't let yourself get too discouraged. It also doesn't help to whine about it. I'm not trying to be harsh; I'm just being honest. The more positive you can stay, the better your chances are of healing. Plus, it makes that down time in bed a whole lot easier to tolerate. The discomfort won't last forever! Use this down time to make some peace and give yourself a rest.

I'm not sure if this is purely a coincidence, but I noticed that since I've taken the time to really detox this time around, my reactions aren't as harsh. When I say detox, I mean simple things.

While I appreciate it when people are willing to try unconventional methods of detoxification (i.e. ionic foot baths, sweat suits, strange mixtures/elixirs of kitchen items that don't belong together, excessive supplements) I'm just not in that camp. I do realize that many of our systems are compromised and that detox is difficult, but for me, I feel like a few small steps will go a long way to restore balance in time. Patience is the key word.

I drink at least a gallon of water (with lemon) each day. I've been taking my magnesium, probiotics, thyroid pills, and prenatal vitamins. I make sure I scrub well in the shower. But most importantly, I don't eat crap food. By crap I mean anything packaged, dairy, or bready, even when it's falsely advertised as "natural and healthy."

I eat lean proteins, fruits, and vegetables. For grains I eat brown rice. Some people eat quinoa. (I can finally admit that I don't like the taste, so I say no thanks to that.)

The less our bodies have to work to filter out all of the crap we eat, the more energy it has to filter out the crap that Lyme and Co. leaves behind.

If all else fails, remember, all of this really is temporary.

Making Progress

2010-03-03T17:00:00.003-05:00

I'm keeping this brief, because I feel like I got hit by a truck today, but I wanted to report that I fired the evil high risk doctor when he failed to respond to my complaint letter.

On Monday, I went for my four month OBGYN visit, and I was pleasantly surprised. I told the doctor my story, and she was so appalled by the high risk doctor's negligence, that within twelve hours, she pulled strings and had appointments set up for me to see a new high risk doctor, as well as the head infectious disease doctor at the hospital in my town.

She was even kind enough to tell me to call her after hours if I had any questions or just wanted to talk. I've never had such immediate medical gratification, and I certainly haven't had a doctor who genuinely cared so much. (If you are in CT and want the name of the best OBGYN in the universe, email me. I can also give you the name of a doctor to avoid at all costs.)

Infectious disease doctors are notorious for disagreeing with long-term antibiotic treatment. My LLMD even called to tell me that even though it was great news that I would see this new guy, I should be prepared to be challenged, as some of the "non-believers" can be "hostile."

I wouldn't say that I got warm fuzzies from the ID doctor, but he was far from hostile. Conservative, but kind is the best way to describe him. Regardless, he saw the twitching and wrote the order for all six months of IV Rocephin.

Here is something I learned that might be useful to you: In CT, it is illegal for an insurance company to deny coverage for Lyme orders written by an infectious disease doctor, neurologist, or rheumatoid arthritis specialist. (I'm too tired to fact check this right now, this is just what the doctor told me.)

So, tomorrow I am going to the hospital to FINALLY get my PICC line. Baby will be protected in no time, and mom might even start feeling better.

Letter to My Unresponsive Doctor

2010-03-01T13:09:00.005-05:00

Still haven't heard from any doctors, even though I call them daily. I saw my regular OBGYN this morning (not Lyme Literate, but she has been the most amazing doctor to date and has turned into an advocate for me--she even called the high risk doctor while I sat with her in her office. Of course, the high risk doc is out of the office today).

In the meantime, since both LLMD and high risk clown are unresponsive, I was left with no option but to communicate in primitive form. Yes, I dusted off the old fax machine and complained in writing via a communication device deemed obsolete years ago. Hey, whatever works at this point.

In case you ever need to write a letter to your doctor, here's an example. I'll keep you updated on whether is was effective.

Dear Dr. _____ and Staff:

I am submitting this in writing, because it has been impossible to get any information from you or even get a phone call back. We are having some serious communication problems here, but before I get even angrier and find a new specialist, I am giving this one last try.

I saw Dr. _____ for a consult on Feb. ____ to discuss how to treat my severe case of Lyme Disease during pregnancy. We agreed IV Rocephin was the way to go, and I was told that I would have a PICC line in by the end of the week.

It is now March 1st, no PICC line, and I can’t even get a call back from anyone in the office to update me on the status of this order! _____ is avoiding my phone calls at this point, and I don’t blame her, as they occur daily. She hasn’t given me a bit of info to work with and insists that Dr. ______ will call me “today.” Today has come and gone for over two weeks.

I understand that insurance initially denied the claim and needed an appeal. However, I didn’t expect to be left completely in the dark as to what is going on with that appeal. Over a week ago, I called and told ______ that we will pay for the treatment! We just need to get it started. Why didn’t anyone respond to that?

I have called numerous times to say that I am completely out of antibiotics and that I need some called in. Dr. _____, my Lyme doctor, maintains that you are the ordering physician, and that treatment goes through you during my pregnancy, so I can’t get any help there. How scary is that when I can’t even get a call back about the antibiotics I desperately need?

Since I’ve seen you, my symptoms have taken a turn for the worse. I am now dealing with scary fluctuations in my heart rate (low 80s dropping to low 50s in minutes, leaving me on the verge of fainting). My muscles are so weak I need assistance walking and climbing stairs, and my migraines are so bad that I am vomiting. I have vertigo and double vision which prevents me from leaving the house unless it is an emergency, and I am twitching all day long.

It is bad enough that I am dealing with this with no assistance from a doctor right now. What’s worse is that there is a helpless baby involved, and I am ashamed for you for dropping the ball on this.

Something needs to be done now, and I need the following things to be addressed today:

What is the status of the insurance appeal?
How long will it take to have fully exhausted the process?
Have you been in contact with either of my doctors?
If insurance is a no-go I WILL PAY FOR TREATMENT. When can we start?
In the meantime, how much is it hurting my baby to not be on antibiotics, because I know the lack of treatment is hurting me. If it’s going to take a while to start IV treatment, will you please call in some orals?

Thank you for your assistance with this.
I don’t mean to be a squeaky wheel, and trust me, I hate calling you as much as you hate hearing from me, but I am out of options.
I am just trying to protect my baby and myself.
Please don’t continue to leave me hanging like this. Any info is appreciated.

I can be reached at xxx-xxx-xxxx
or on my second line: xxx-xxx-xxxx

We can make this right. We just need to get moving before I end up in the hospital again.

Thank you,

Sara