Thursday, June 30, 2011

The Countdown Has Begun

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!

Thursday, June 9, 2011

The Financial Burden of Lyme Pregnancy

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!

Thursday, June 2, 2011

Antibiotics Throughout Pregnancy?

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?