A Short Break

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

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

(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

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

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

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!

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.