Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Hi all..I keep saying until they find out what causes " IT " there will be no cures. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 In a message dated 5/9/99 9:25:18 PM Eastern Daylight Time, C3814@... writes: << Hi all..I keep saying until they find out what causes " IT " there will be no cures. >> Carole, if they've already found at least half of the smoking gun, there may not be a cure, but I'm betting on a therapy that will give some real life back to the patient. A paper has been submitted finding over 90% (in research, that's read 100%) with HHV-6A either active or reactivated. And with the work on a therapy now ongoing, I'm still a pollyanna!! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 rhbailey@... wrote: > From: rhbailey@... > > Dear Christie, > > I was told that the doctor's friend (also a doctor) improved greatly on > ampligen, but crashed (her term) when she stopped. > > Sue B. said this is true with the interferon as well, if she misses doses she feels it right away. Apparently these are treatments, not cures. Marcia > > > ------------------------------------------------------------------------ > Star Wars fans are using ONElist to share the fun. > > Are you? > > ------------------------------------------------------------------------ > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Dear Sue, This sounds like a drug that cannot be stopped -like insulin. Did she stop because she was in a trial? That crash is awful. In trials, if something helps, it seem s that people should be allowed to remain on the drug, both to help them and to study long term effects! take care, Christie At 06:07 PM 5/9/99 -0400, you wrote: >From: rhbailey@... > >Dear Christie, > >I was told that the doctor's friend (also a doctor) improved greatly on >ampligen, but crashed (her term) when she stopped. > >Sue B. > > > >------------------------------------------------------------------------ >Star Wars fans are using ONElist to share the fun. > >Are you? > >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 > << Hi all..I keep saying until they find out what causes " IT " there will be > <<no cures. >> > Carole, if they've already found at least half of the smoking gun, there may > not be a cure, but I'm betting on a therapy that will give some real life > back to the patient. What therapy is that? > A paper has been submitted finding over 90% (in > research, that's read 100%) with HHV-6A either active or reactivated. I don't find this surprising at all. Did they use spinal fluid to test? Do you have a copy of this paper? Who is the author? How can we obtain a copy of this paper? > And > with the work on a therapy now ongoing, Is the same author who is working on this paper working on a therapy? Patti -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 Patti, the authors have submitted a paper for publication. That means they now must wait for it to be taken, perhaps rewritten, and, finally, published. So it's nothing you can get your hands on today. The researchers, Drs. Carrigan and Konstance Knox, are looking for ways that are not dangerous that will completely stop the virus (HHV-6A) in it's tracks. The National CFIDS Foundation has paid for this research and they've already had some prelininary good luck and are continuing. By the end of this year, we hope to know more. News for the future is looking up despite the fact the the largest patient organization in the U.S. no longer is funding research (CAA). With this work in progress, it promises to help not only patients with CFS, but MS and AIDS as well. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 In a message dated 5/10/99 2:59:52 PM Eastern Daylight Time, mgrahn@... writes: << How can we be sure whether only weakened immune systems such as those with CFS, AIDS, and MS allow the hhv6 to become active and not that hhv6 causes the weakened immune systems and treating it will cure us. Which comes first the chicken or the egg? >> Without HHV-6A, a patient who is HIV positive has no symptoms. The same goes for MS. If the same goes for CFS, does it matter if you still have it if you have no symptoms?? EBV was noticed early on, but the United States knew it was merely being reactivated (Dr. Jay Levy) just days after they called in Chronic EBV, but didn't know how to get out of the position of falsely naming an illness. Their solution was not to admit it was ME and to make up a name with a panel of 16 doctors....4 who quit when they couldn't understand how this panel would name an illness after one symptom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 1999 Report Share Posted May 10, 1999 GAILRONDA@... wrote: > From: GAILRONDA@... > > Patti, the authors have submitted a paper for publication. That means they > now must wait for it to be taken, perhaps rewritten, and, finally, published. > So it's nothing you can get your hands on today. The researchers, Drs. > Carrigan and Konstance Knox, are looking for ways that are not > dangerous that will completely stop the virus (HHV-6A) in it's tracks. The > National CFIDS Foundation has paid for this research and they've already had > some prelininary good luck and are continuing. > By the end of this year, we hope to know more. News for the future is > looking up despite the fact the the largest patient organization in the U.S. > no longer is funding research (CAA). With this work in progress, it promises > to help not only patients with CFS, but MS and AIDS as well. > Gail This sounds reminiscent to me of years ago in my CFS they thought it was ALL caused by the Epstein Barr virus (another herpes famlily virus), and we all had it and all they had to do to " fix " CFS was tackle that virus. One has to wonder if hhv6 isn't yet just ANOTHER symptom of our disordered immune systems, just like the EBV, CMV, mycoplasmas and yeasts, one of just another opportunistic organism allowed to invade us because of the immune system defects we have. Seems to me that unless we can " fix " the immune system as others here have been discussing, then treating hhv6 is treating just another symptom. How can we be sure whether only weakened immune systems such as those with CFS, AIDS, and MS allow the hhv6 to become active and not that hhv6 causes the weakened immune systems and treating it will cure us. Which comes first the chicken or the egg? Marcia Quote Link to comment Share on other sites More sharing options...
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