Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Depends on who you ask, Mike. My doctor still puts both cfs and Lyme as a diagnosis. She uses whatever will get insurance to cover the treatment or tests. If you ask me I would say both labels are completely accurate for me as the symptoms are identical. That is why my doctor determined I had cfs when I had only been sick 2 months - it was obvious, and he thought he had ruled out everything else back in 1995. Of course, the 3 Lyme tests I had back then were no good. But if you are asking me, am I still sick, I would say I don't know. I've recovered a lot in 11 years, but had a set back 7 months ago that doesn't seem related to Lyme. It is hard to tell and no one has figured out what is going on. I don't think that was what you were asking though. a C. > > So do you still have CFS? > > Thanks > > > > > > Hi Mike, > > I know this is my pet hunch because everyone in my family turns out > > has borrelia. My cfs was a classic case, yet it turned out to be > Lyme. > > I've mentioned a cfs doctor here before who found that 95% of his > cfs > > patients were, in reality, Lyme cases. > > > > So what I would like to see is a massive study testing cfs patients > > for a few pathogens. Trouble is, no one can agree on valid tests. > This > > would mean that some would turn up false negative. If the standard > > western blots at LabCorp and Quest were used for borrelia there > were > > be massive numbers of false negatives, and the whole thing would > look > > like a joke. If IgeneX were used the government would say their > test > > was no good. > > > > I've done a fair amount of stock market research, but I can't > figure > > out who stands to make money on this one when you can't get the > > government behind it. > > > > a C. > > > > > > > > Right. What I was attempting to write was that initially > patients or > > > CFS organizations fund a reseacher, then some company buys > > > the patent that the research has produced with the hopes of > striking > > > it rich. I think the NCF has been trying, but if you read a's > > > latest message, it is easy to see that nobody can even determine > if > > > CFS is bacterial or viral or something else. If I were a > > corporation, > > > I wouldn't spend a large amount of money purchasing the rights to > > > any research that has been done so far. I guess we just have to > > > keep trying and eventually we will 'kiss the frog that turns into > > > the Prince'. > > > > > > Mike C > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2006 Report Share Posted December 23, 2006 " pjeanneus " <pj7@...> wrote: > > How are they different? > > a Carnes Gosh, a, how can we know for sure? Without running Dr Cheney and Dr s extensive testing, it's difficult to say if current CFSers are immunologically different, but a number of people in this group have assured me that " Incline Village CFS no longer applies " , that the " CFS " they are thinking is more vague and heterogeneous, and that our cohort are just a small subset - with the vast majority being nothing like us. If someone strongly insists that their illness is not like ours, what else can we surmise but that they do not recognize the same signs and symptoms in themselves that we had, and are making the self- determination that they have some significantly different illness which they are still calling " CFS " anyway, thanks to the looseness of the definition? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2006 Report Share Posted December 23, 2006 a-your comments below confirm what I have been thinking but since this is an exp. treatment list I haven't written a message. I have no Lyme symptoms, especially joint pain, but I have a 'CFS' diagnosis from four docs, three of which are infectious disease docs who questioned me about Lyme symptoms. I fit the Cheney cardiomyapothy diagnosis. I am OK as long as I don't get out of a chair, more or less. As Cheney said on his on-line video lecture, we may never get to the root cause of CFS. However, I believe that one has to remain hopeful or else........................ Mike C (Merry Christmas/happy holidays to all) > > Depends on who you ask, Mike. My doctor still puts both cfs and Lyme > as a diagnosis. She uses whatever will get insurance to cover the > treatment or tests. If you ask me I would say both labels are completely accurate for me > as the symptoms are identical. That is why my doctor determined I had > cfs when I had only been sick 2 months - it was obvious, and he > thought he had ruled out everything else back in 1995. Of course, the > 3 Lyme tests I had back then were no good. But if you are asking me, am I still sick, I would say I don't know. > I've recovered a lot in 11 years, but had a set back 7 months ago > that doesn't seem related to Lyme. It is hard to tell and no one has > figured out what is going on. > > I don't think that was what you were asking though. > > a C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Jan.2007 IACFS conference <http://phoenix-cfs.org/PR%20SP%20ED%20IACFS%20Conf%20II%2007.htm> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 We have no idea whether the viruses are the key players or whether it might be borrelia, babesia, ehrilichia, Q fever, bartonella,c. pnuemonia, mycoplasma etc. The reason we have no idea is because the money is going to research on genes or sorting out cases by symptoms, not valid lab tests for various infections. Given 20 more years we may know how genes are disrupted and which bacteria and virus combos do that. I expect I will be dead by then. It was a very strange conference, and we are going backwards not forward. a Carnes > > re: IACFS conference and Dr. Chia > > I just saw Dr. Chia of Torrance CA who evidently won some kind of award for clinical excellence; he was at the conference; he feels like the evidence is mounting that CFS is ultimately, at its root cause, a viral infection in which the symptoms are the result of the immune system fighting an ongoing battle against a virus it cannot eliminate, but fights perpetually. It seems he feels that the research must focus on ways of eliminating the virus; I think he is finding 82% of CFS, Fibromyalgia, Lyme patients with these enteroviruses in their stomach and 50% of them are finding relief with a chinese herb called Oxymatrine which is some kind of immune booster. > He is looking to get research money to further his research. Perhaps we could all pitch in. > walter > CFS for 20 years > > > > > > > Quote Link to comment Share on other sites More sharing options...
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