SHIRLEYINVA
08-09-2001, 10:49 PM
Hey to all with TTP. I am wondering how many,if any of you have ever had Cancer before getting TTP? I just found out today that my 33 yr. old niece was diagnosed with TTP,I find it amazing that both of us (in the same family) has this supposedly rare disease. We both have had cancer years ago.Just wondering if it could be a link. Thanks and stay well.
Shirley
Shirley
Sponsor
Ilona
08-10-2001, 11:45 AM
Hi, Shirley. I've seen articles on TTP patients who currently have cancer, where TTP is an undesired response either to the therapy or the current cancer (I'm not sure at all on these last two points), but I've never seen papers indicating that cancer causes TTP either later or during the illness in substanial numbers of people. Do a medline search for cancer and ttp and you'll come up with the links that do exist and that have been posted on the web. I personally have never had cancer, at least to the best of my knowledge, and I'm not being facetious, because how do we know whether many of us don't come up with the occasional early cancer that our immune system then wipes out? Do you and your niece have the same kind of cancer? If I recall correctly, it may happen more frequently in breast cancer patients, but please, I really don't remember where or even if I actually saw that article. It's a vague memory. It's not surprising that it would run in families even apart from the so-called familial TTP (by the way, have you asked your doctor about that?) because assuming TTP is an undesired immune response various precipitating causes, it seems logical that individuals' genes mediating immune response would be more similar in related people. And back to my pet theory, with emerging diseases cropping up left and right, thanks in part to global warming as well as plain old fashioned Darwinism, isn't it logical to suspect that if you and your niece were exposed to a new microbe that's becoming prevalent, such as borrelia, babesia, ehrlichia, or bartonella, why wouldn't you react similarly? TTP occurs in a few percentage points of people after every E. coli outbreak, and one of the earliest studies on TTP focused on a husband and wife who were unrelated except by marriage, and there are documented links to tickborne diseases. These all indicate an immune response that occurs in a small percentage of people after exposure to a microbe of sorts. It doesn't rule out a cancer cause, tho, so do that medline search. Good health to us all. Best, Ilona.
SHIRLEYINVA
08-10-2001, 10:38 PM
Ilona,Thanks for the reply,You raised some interesting points.I will research the cancer/TTP theory further.My neice and I both had a cancer concerning the lympth glands,her's was in her neck (throat area) mine was under my arm.I also had cervical cancer,she did not.so.....back to a previous problem,my joints are still acheing,Doc thinks I should see a rhuematologist(spelling?)But I am still going to talk to my Oncologist about the Lyme.Stay Well
Shirley
Shirley
Ilona
08-12-2001, 10:01 AM
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.
Ilona
08-12-2001, 10:26 AM
One more thing. I don't know what kind of lymphoma you had, but there are many articles detailing links between borrelia and various lymphomas (B cell in particular.) Plus, there's a woman I know not medically but socially who happens to be a hemonc who runs a research lab doing a long running trial on certain aspects of lymphoma at a large NYC hospital -- not one where I was ever treated, so I can neither praise nor trash it -- and I'll probably see her tomorrow night, and if so I'll ask her whether she knows of a lymphoma-TTP connection.
Ilona
08-14-2001, 08:25 AM
I saw my friend. She said knows of a link between current cancers, and yes, she also thinks they are breast cancers, but again, her specialty is lymphoma, not TTP or breast cancer. She IS NOT AWARE of any link between lymphoma and TTP onset years later. She was quite intrigued by you and your niece having the same diseases, and you really should dig up who's doing research on this, because the two of you might be of enormous help to science. Please, please, do the ANA test and then the tick borne tests. I'll put myself on the line and say with certainty that anyone who has TTP with joint pains has an identifiable current active underlying cause for their TTP, you just have to find a doctor who's curious enough to read the literature and is caring enough and enough of a detective to want to find out. BTW, does your niece have joint pains also? Please keep us posted.
SHIRLEYINVA
08-14-2001, 11:27 PM
Ilona,Thanks for talking to your friend,I have felt all along that there is an underlying cause for my TTP.I just don't understand how something like this can just happen!Hope you don't mind,but I feel like letting off a little steam,I strongly believe I started getting sick in Sept.I had terrible chest pains,I thought I was going to have a heart attack! My husband took me to the local ER.They kept me overnight and did a stress test the next day.The doc.said it was okay.I found out just a few days ago,(after requesting my records)My platelet count was 171K at that time.They sent me home and 12 days later I had a Heart Cath.because the pain didn't let up.I also requested my records from that procedure.My platelet count then was 109K.I believe somebody was very negligent in not comparing the lab reports and say to me"your platelet count is a little low,you might want to follow up on it"But no....They didn't say a word,so 2 months later I was down to 8K,I would not have had to get as sick,and almost die, if I had known! I did learn a valuable lesson,from now on I am requesting a copy of everything they do to me.Well any way enough of my complaining.To get back to my neice,I don't know if she has joint pains,but I will find out. She goes to John Hopkins in Baltimore tomorrow to see what course of treatment she will have. I will find out from my sister how it goes and will let you know.My neice lives in PA.I didn't start having the joint pains until I was released from the hospital.I am getting worse every day.My hips even hurt now when I try to sleep on my side.I get so depressed sometimes.Thanks for "listening" People that have never had this----!just don't understand.I'll keep in touch,Stay Well......Shirley
Ilona
08-15-2001, 11:29 AM
Shirley: You need to run, not walk, to some decent doctors. Listen, I don't know whether you have a tickborne illness, but it sure sounds like that is a strong possibility. Don't bother your regular doctor or hemonc with this stuff. They won't know about it, and because they don't know about it, they will pooh-pooh it. Unfortunately, doctors are not rocket scientists, and that's the sad truth, and the medical culture is such that docs are very slow to accept something unknown to them. The good side to this is that they don't try to administer every snake oil remedy that comes to market. The bad side, is, well, cases like yours and mine, which most docs don't understand. I think you need to get an LLMD (Lyme literate MD, that's their nickname) and there is one in Virginia, I know, because I see some people from Virginia posting about their LD and ehrlichiosis etc. You need to visit Lymenet.com ASAP and find the LLMD in Virginia who's good. Once you go to Lymenet.com, then go to the flash messages and post. People will answer you, but they won't post LLMDs' names on the board. They'll email you privately. Post your story, give the medical history, and I promise you, you'll get at least ten responses very quickly. I'll call my LLMD in upstate NY, whom I saw yesterday, and see if he can recommend someone in Va. This is probably going to cost you $$$ out of pocket, but it's worth it. I've spent bucks, but at least I finally got a diagnosis and treatment that made me feel better. As for labs, not all labs are created equal. Igenex, Bowen, and there's one in NJ whose name I forget -- these are all good. Quest is second rate, so try to get an LLMD who uses one of the better ones. Another problem is that regular docs don't know the difference in the tests, so they'll look at the test results and not understand them. So, you shouldn't wait on this one. Please remember that TTP can be fatal, including TTP due to underlying ehrlichiosis, so please check it out. Moreover, the longer Lyme Disease stays in you, the harder it is to eradicate. I don't believe the same is true for ehrlichiosis and babesiosis, but whatever, you need to get rid of that arthritis. I know this is all time and $$$, but your life in worst case scenario, and reduction or elimination of pain in best case scenario depend on your being your own medical advocate. ilona.

