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 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.