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.
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.
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.
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.
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.
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."
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.
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..."
"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?
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.
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...
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.
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.
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.
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:
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.
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?
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!
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!
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?
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?
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!
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.
I am a mother and writer with Chronic Lyme, on the road to acceptance and recovery. I was bitten in 1996, diagnosed 2008. I am living proof that it is possible to live meaningfully and have happy, healthy children while battling this terrible disease.