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Ilona 02-10-2001 05:16 AM

possible TTP/Lyme connection
Hi. This might be of interest to any TTP patients with joint/muscle problems -- both constant achy tendinitis types and short, "lancinating" bursts of not severe pain. Doing internet research I tracked down some possible connections between TTP and some severe infectious diseases, and just recently I finally got around to seeing an infectious disease specialist. I latched on to this path because I have all these little "lancinating" short muscle pains in my legs and arms, which appeared and were very severe at the time of my TTP, which began in the early summer of '99 and culminated in hospitalization Aug.-Oct. '99, in an abysmally awful New York City hospital, and which got worse during any exacerbation of the TTP. I still have them now, but they are much less frequent and severe and come and go. I still have pretty constant tendinitis in my hips, which could either be because I'm fat as a house (220 lbs., up from 125 before childbirth --- 13 years ago, I have no excuse) or, well, it too came on about six months before the TTP, and at the time I thought it was arthritis from being too fat, but maybe it's from something else. Anyway, after hearing my story, the doctor ruled out the infectious diseases I had mentioned but said I probably had Lyme disease, because tendinitis and lancinating muscle pains that come and go, either with the menstrual cycle or on some other cycle, are symptomatic of Lyme. Sure enough, I had been to areas where Lyme is endemic, such as the Hamptons on Long Island, New Jersey for berry picking, and I had a dog, which I walked every day in Central Park in NYC, and who had fleas every summer and possibly ticks, although I never saw one. Lyme, BTW, is transmitted by insect bites. Oh, and one more thing, I had a very weakly positive ANA test, and false positives in the exact same configuration are typical of Lyme. So he gave me both the Elisa and the Western blot tests for Lyme, and on the Western blot, you're supposed to have five out of ten bands positive in order to definitely have Lyme, and I had two, but they were the two most closely associated with Lyme, and anyway, fewer than five show up pretty frequently. So two bands is considered "inconclusive," although I asked him specifically and he said there's no other possible explanation for the appearance of two positive bands, which makes me wonder why they want five for a definitive diagnosis. Anyway, what they do then is treat you with doxycycline, with the rear-view mirror logic being that if your lancinating muscle pains and tendinitis get better with the doxycycline, then that proves you had Lyme. The choice of drug is interesting, because if you search the literature, you'll find medical journal articles from certain Southern hospitals where doxycycline alone has been shown to completely cure a number of TTP cases. Now, these lancinating muscle pains are a symptom of nerve damage, which is a main problem with late stage Lyme, and we all know that TTP, probably via the clots that deprive nerves of nutrition, does damage to nerves also (how much, or whether it can ever be permanent, is a mystery) so it will be interesting for me to see whether these lancinating pains disappear with the doxycycline, or whether they're a left over permanent present from the TTP. So, the question really is, do I have Lyme, and if I do, was it just completely coincidental that I had that and the TTP at the same time, or is there a link? So little is known, and it might very well turn out that in ten years scientists will determine that in some people Lyme disease can cause that whole bad vW factor enzyme cascade that brings on TTP. Anyway, if any of you have similar symptoms, try to get a test -- not just an Elisa, but the Western blot too -- for Lyme. Don't worry if you've never been to Lyme states. The disease may have spread west, and the authorities just aren't aware of it yet, or you may have once petted a dog that was visiting from another state and wound up with an insect bite. BTW, he checked my plates, the first time in about 9 mos., and they're close to 240K. I'll keep everyone posted, and I just hope that somewhere there's a doctor who reads this and actually looks up some medical journal litereature as a result, because we all know that reading the latest research (not to mention actually doing it) as well as reading the the patient's chart is too mentally taxing for 75% of U.S. physicians. Well, please have a high platelet low LDH Valentine's Day, everyone. Best, Ilona.

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