Hi, everybody. I've been on doxycycline for almost three months now, and muscle cramps and joint pains have markedly diminished. It was probably Lyme disease that sparked the whole TTP thing, although I can't say that with absolute certainty. However, I'm not out of the woods yet, since it takes months or years of antibiotics to get rid of late-stage Lyme, and while the little pains are diminished, they're still present. Moreover, I have some symptoms of TTP returning -- nothing too urgent, no black and blues, but a period that's running like red ink. Sorry if that grosses anybody out. So I guess I'll drag myself off to a hematologist -- a good one, this time, no more of those lousy HMO doctors, since I have a POS plan I now know better; too bad the lesson almost cost me my life -- and at least get my plates checked. BTW, I also had 53+ pe's and what a
WASTE.. it never cured me, the vincristine did, and bought me time to investigate the probable underlying cause. At least I tested negative for HIV and HCV after the fact. I pray that I didn't get something like mad cow that they don't test for yet. Best to you all. Ilona.

Glad to hear that you are doing better. I remember that you had wondered about the Lyme disease connection..... Best thing about Mad Cow disease is that you probably won't even know it. HA HA HA!!! Just kidding of course, but we must keep our humor.

It is tough to have to be tested for diseases after transfusions. Glad to hear your results were good.

Hi Ilona!

I found it really interesting that you made the connection between insect bites and TTP. I had a hunch because it seemed that before nearly every relapse, I had a nasty bout with some insect bites that swelled up (I assumed black flies, but who knows?) Nice to know that my hunch wasn't completely out there. I haven't had a relapse since the spleenectomy, but if I do, I know what I'm going to have them test for!

I can relate to the awful feeling when you have to get tested after the transfusions. I've done it three times now--all negative for Hepatitis and HIV. Actually, it appears I have an immunity to HEP B--Given to me by a donor? Who knows but Thanks to whomever donated that blood!!
Glad to hear your results are good and you're on your way to recovery. Please keep us posted!
Phylly

Hey, Phylly. There are established -- well, I shouldn't say established; they're merely anecdotal, but they've been published because they've happened over and over again -- links between spider bites and TTP. However, I don't know whether in those cases the TTP is a reaction to spider venom or is a reaction to a microbe carried by a spider. Then, there is also a link between tick borne illnesses and TTP, and in those cases it's clearly a microbe that starts the chain of events leading to an episode. If you've suffered from bites of any sort, you might as well go get tested for Lyme, with the knowledge that there are many false negatives and false positives. I don't know whether horseflies carry borrelia (the Lyme spirochete), but anyway, the test can't hurt, because borrelia lives over most of North America. In my case, by CDC standards, the results of my IgG are "inconclusive" for Lyme and the IgM are negative. What that means is that the CDC requires something like five (?) bands out of ten (?) to be positive for LD (Lyme Disease). In my case, only two bands were positive, but they were the two most closely related to late stage LD, and moreover, there is no other known cause for a positive reaction in those two particular bands. My doctor took me off doxy after three months, but there was an immediate return of little lancinating pains, little twitches, missed words (for example, I told someone I had "Lyme Degrees") and other symptoms of LD. He said he wanted to wait and see before trying something else. I live in NYC, where there's not much LD; in these parts most of it is contracted by people who live in the suburbs or have houses in Connecticut, New Jersey, or the Hamptons on Long Island, where LD is just all over the place. So I found a doctor in Westchester, about an hour north of NYC, who was running a double blind trial on treating relapsing LD patients with 3000 mg of amoxicillin, or 3000 mg of sugar, and sure enough, the lancinating pains have been subsiding, and now, three weeks into this trial, I have almost none, and no twitches either. I feel confident that I got the amoxicillin, not the sugar, because the stuff stinks just like amoxicillin, and moreover, well, I shouldn't admit this on the Web, but here goes. About a year ago, I had a cold, and once it got to the green shmutz stage, I figured any doctor would prescribe antibiotics, and I happened to have some unused amoxicillin lying around the house, and so I self-medicated, and of course the green shmutz immediately cleared up from my nose, but I also noticed that the lancinating pains dwindled in frequency and intensity -- the same way that they're doing this time. With doxy, it was quite different. Within the first four days there was an intensifying of symptoms, which they say is typical of something known as a Herxheimer-Jarisch reaction, which is when the drug kills the bugs, and their die-off produces lots of toxins to which the immune system reacts vehemently. I guess one drug is bacteriostatic (stops the bugs from reproducing) and the other is bacteriocidal (actually kills the bugs). Anyway, my response to them was very different. With my TPP, though, the cause is so unclear, because leading up to the onset of the TTP, I had a rash that I only now recognize could have been a bullseye rash so typical of LD; I had spider bites; I had a tooth abscess; I had a bout of severe diarrhea (E coli?); I had plenty of cat scratches; I had flea bites courtesy of my dog; and lastly, a severe URI, which could have been the precipitating event of the TTP or an early manifestation of LD. OTOH, I could have had LD for 20 years, because about then I had a nasty year-long case of vertigo, which is also a symptom of LD. Who knows. Doctors used to boast they had whipped infections, but AIDS sure proved them wrong, and now it's coming out that plenty of so called auto-immune diseases may be caused by microbes. Anyway, all my blood work is normal, at least for now. Keep well.

Omigosh, I think I've hit the jackpot. I feel like s---, but at least I'm on a research roll. I inputted search terms differently, and I came up with five hitherto unseen by me articles, scattered through the past three decades, all linking Lyme with TTP, including one from the 80's detailing relapsing TTP in a German woman born in 1902 in whom the active microbes were found. Please, please, folks, if any of you have any LD symptoms -- arthritis, lancinating pains, Bell's Palsy, mental fog, look up the list yourselves -- get tested. I'm going to see if I can drag my posterior out of bed tomorrow, and it is drag, because the fatigue and headaches have been awful of late, to the New York Academy of Medicine, which is a public medical library with very helpful librarians. Even Beth referred to the lamentable state of affairs ... "see one, treat one, teach one" mentality, so we need all the info we can get. I'll post as soon as I read the full texts, and get the one in German translated. Not one hematologist or infectious disease specialist or general practitioner I spoke with knew about this. Keep well.