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.