Lyme disease: just how screwed am I?
October 19, 2012 9:14 AM Subscribe
LymeDiseaseFilter: Have you or someone you're close to had Lyme, had it treated, and more-or-less lived to tell the tale? I'm seeking anecdata to help me calibrate exactly how freaked out I should be about this diagnosis.
posted by anonymous to health & fitness (28 answers total) 7 users marked this as a favorite
So I recently got a definitive diagnosis of Lyme borreliosis via an antibody test (Western blot) that's apparently fairly unlikely to produce false positives. I've spent days reading over all the recent literature, but it's unfortunately a super-politicized field, with a big angry split between researchers who think it's no big deal, just take some antibiotics and it'll go away, and researchers who claim it's a persistent infection that might just never fully clear with current treatments. Plus bonus accusations and counter-accusations of ethical violations and evidence suppression, fun!
I'm to the point where I'd really just love to hear some real people's experiences with the disease, to help me figure out some sort of realistic middle ground between Ehh, no biggie and Congratulations on your new future of inevitable agonizing pain and increasing cognitive dysfunction!
Bonus points if anyone can comment at all on:
-- Disease/treatment courses that depart from the "classic" mold. Part of what has me worried is that I'm fairly sure I got the Lyme erythema-migrans rash AFTER completing my first course of antibiotics: I'd gone to the doctor in early August with the post-tick-bite swollen-glands-and-fever part of the disease (no rash), and was prescribed 21 days of amoxicillin, but then ended up getting a fairly small (3cm) solid oval rash in early September, about two days after finishing the antibiotic. (Full disclosure: I missed about 5 pills of the 63-pill course due to flightiness, but surely that shouldn't completely inactivate the treatment, should it?)
I spent most of September hoping that perhaps the rash was something else and I'd never had Lyme at all, until the positive Western Blot, plus some very mild but definite knee pain, plus the mysterious disappearance of the mystery rash on exactly the expected timeline for EM, pretty much clinched the matter. I started 21 days of doxycycline about a week ago, and the knee pain is pretty much gone, but I'm concerned that if there IS a biofilm-forming, refractory, brain-eating strain of the disease out there, the failure of the first course of treatment might mean that that's the one I've got. (I know the antibody test should stay positive whether I've got working Borrelia or not, but the new symptoms seem suspicious for ongoing infection... right?) So any anecdotal reassurance (or confirmation :( ) on that front would be awesome, as well.
-- Tips for dealing with docs. I will of course be seeing a rheumatologist ASAP, but I'd like to figure out beforehand exactly how aggressive I need to be about seeking ongoing treatment or assessment.
-- And lastly, dynamics of the disease with pregnancy/childbirth (another disputed topic among the experts). This is particularly rotten timing because we were planning on trying for another kid in late November.
Basically, tl;dr-- please tell me about your experience with Lyme disease. Thanks so much!