Ilona

Shirley: Have you had an ANA test? How strongly positive it is and in what configuration can determine what kind of underlying collagen vascular disorder you have, if you have one at all. That's what the rheumatologist will look at. Also, are you RF negative (for rheumatoid arthritis)? Back to the ANA, I had a weakly positive ANA in the centromere configuration, but only at certain hospitals, not others, and that's because some labs are better than others. Now, the centromere configuration indicates polymyositis/scleroderma. Further tests indicated that I did NOT have this disease. When I finally got a diagnosis for Lyme Disease, the infectious disease doctor mentioned that weakly positive ANAs are very common with tick borne diseases. So, if you get a weakly positive ANA, and further tests rule out autoimmune diseases, it's one more hint you have an underlying microbial cause. If you can get tests for the tickborne diseases, make sure you get a Western blot, not an Elisa alone, and make sure your doctor doesn't limit himself to the five band positive CDC criteria. These tests are less than accurate, and while the CDC requires five bands positive for reporting purposes, it also clearly states that five bands positive is not necessary for the person to be infected. i.e. you can have, say, Lyme Disease and not have fewer, or even no, bands positive. Stress this to the docs, please, cause many don't understand that part. Meanwhile, make sure they look for babesiosis and ehrlichiosis. There are plenty of documented TTP deaths linked to those two. Most doctors, unfortunately, don't know about them. Of all the hemoncs I saw, none knew of the connection, and only one -- the most famous one, who has published many articles -- had the grace to say she didn't know why I was having these symptoms after the tests rules out autoimmune disease. On the other side of the coin, none of the infectious disease specialists knew about them either, so you have to plead with both sides to look at the connection, which of course is in the literature, but since many docs don't have time to read, it's up to you to press the possibility. So, please, be aggressive about pursuing all these possibilities, and ask about rheumatoid factor, and what your ANA shows, and if you can rule out RA and autoimmune diseases, then pursue (and I promise you, here you'll run into some MD opposition) the tickborne avenue. BTW, doxycycline wipes out ehrlichia and borrelia, and coincidentally, some southern hospitals treat TTP with doxy right from the start, even those those hemoncs don't know exactly why it works, altho they have their pet theories. Yet another microbial link. Caveat: long term disseminated infection doesn't resolve as quickly as recently acquired. Babesiosis, also linked to TTP in the literature, requires different meds. Babs can often be visualized (i.e., seen, fancy med word for a simple thing) on a smear, but NOT ALWAYS. This might be of interest to your niece, too. Please keep us posted on your progress and that of your niece. Best, Ilona.