Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 I tried interferon. It did nothing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 Chia reported that 8/14 CFS patients did well on IFN but all relapsed after treatment. http://phoenix-cfs.org/Phoenix%20Rising%20Dec%2005.htm I may be wrong but I believe interferon treatment is also fantastically expensive (?) Cort melillo3 <melillo3@...> wrote: I read in the article I posted on Dr. Kerr that he plans to try interferon on CFS patients. Dr. Chia has already used Interferon on CFS patients, he said it worked for 15 months then his patient relapsed again. Why don't CFS researchers check to see the other research that has already been done before they waste research money ? Al 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 2, 2006 Report Share Posted May 2, 2006 Cat- Did you have white blood cell counts that were low or abnormal? Maybe interferon works only for a subset, like PWCs w/ chronically low WBC count, for example. On another matter, regarding the other posts re this thread, would it be possible to send the Chia info. to Dr. Kerr and get his response. I would do it but there are many more knowledgable folks on this list than me. Mike C > > I tried interferon. It did nothing. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 It mentions that interferon is used in Multiple Sclerosis, which is actually beta-interferon. Chia used alpha and now I believe uses gamma as well. > > > I read in the article I posted on Dr. Kerr that he plans to try > interferon on CFS patients. Dr. Chia has already used Interferon on > CFS patients, he said it worked for 15 months then his patient > relapsed again. > > Why don't CFS researchers check to see the other research that has > already been done before they waste research money ? > > Al > > > > > > 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 3, 2006 Report Share Posted May 3, 2006 Yup, when Dr Chia was talking about me trying interferon, he said I'd be looking at $1500 to $2000 a month! Eeks! Fortunately for my wallet, Dr Chia later said my symptoms were not severe enough for his interferon protocol. > > > I may be wrong but I believe interferon treatment is also fantastically expensive (?) > > Cort Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 > > > > > > I may be wrong but I believe interferon treatment is also > fantastically expensive (?) > > > > Cort > There was a man that came to the CFIDS support group i used to go to in NYC (that no longer exists) that said he was recently diagnosed with CFIDS after having been treated with Interferon for almost a year for Hep C. He said his Hep C titers were down but that he never recovered from the exhaustion, even tho his Hep doc said that he shouldnt still be so exhausted. So thats how he went to my CFIDS doc and got diagnosed . zuzu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 It's quite well-established that interferon treatment can lead to many of the symptoms we experience, so I've always been a little apprehensive about the idea of getting it. Although I'm not sure if any CFIDS sufferers have gotten worse on it. Again - in case anyone missed this - it seems likely he's talking about interferon-beta, not alpha, which is the type used in HCV treatment. Regarding expense - I think beta-interferon is also very expensive, but I'd think that if Kerr is going to trial this for us, and it's successful, it would become a subsidised medication (or however it works in other countries). > > > There was a man that came to the CFIDS support group i used to go to > > in NYC (that no longer exists) that said he was recently diagnosed > > with CFIDS after having been treated with Interferon for almost a > > year for Hep C. He said his Hep C titers were down but that he never > recovered from the exhaustion, even tho his Hep doc said that > > he shouldnt still be so exhausted. So thats how he went to > > my CFIDS doc and got diagnosed . > zuzu > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 When I first discovered this group there was a woman here who claimed to be cured form taking alpha interferon. I can't recall her name. I had two tests to check my levels.The first results showed slightly raised interferon levels.The second test was ok. What confuses me about taking interferon for CFS is that the side effects can be flu like symptoms?Apparently it stimulates the immune system but isn't that what's already going on with some of us? I often feel like my body is pumping out interferon without an obvious trigger. Interferon treatment can also cause depression.As I understand it's not a secondary depression but a side effect. I have noticed when I'm in a flu like symptoms relapse(every other week),I feel depressed. I've questioned this many times and feel the depression is not entirely secondary to my poor health. best Subject: Dr. Kerr & Interferon > > > I read in the article I posted on Dr. Kerr that he plans to try > interferon on CFS patients. Dr. Chia has already used Interferon on > CFS patients, he said it worked for 15 months then his patient > relapsed again. > > Why don't CFS researchers check to see the other research that has > already been done before they waste research money ? > > Al > > > > > -- > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.385 / Virus Database: 268.5.2/329 - Release Date: 2/05/2006 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Dr Chia uses Interferons alpha and gamma. It was the combo of the two that would add up to $1500-$2000. > > > > > > I may be wrong but I believe interferon treatment is also > fantastically expensive (?) > > > > Cort > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 When I first discovered this group there was a woman here who claimed to be cured form taking alpha interferon. I can't recall her name. That would be Clement, she's the one that started this list, to share about her recovery from it. I've tried to track down whats happened to her and how she is doing but can't seem to get any answers. I did hear tho from one source that she was actually misdiagnosed in the first place and not CFS after all. I don't really know what she had now. What confuses me about taking interferon for CFS is that the side effects can be flu like symptoms?Apparently it stimulates the immune system but isn't that what's already going on with some of us? I often feel like my body is pumping out interferon without an obvious trigger. Interferon treatment can also cause depression.As I understand it's not a secondary depression but a side effect. I have noticed when I'm in a flu like symptoms relapse(every other week),I feel depressed. I've questioned this many times and feel the depression is not entirely secondary to my poor health. How long have you been taking the interferon? I know some cfs patients 'are' high in it already. When started this list and was so excited she had found something that was such a miracle cure for her (it was low dose oral interferon alpha, done in single doses from a compounding pharmacy in Texas, came frozen I beleive and she would just squirt it in her mouth as I recall.) she shared it here and a few others tried it and no one else had the same response, a few had little response and most got worse, so she's the only one that had the good response that was on this list. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 hi years ago i tried interferon and it made me sicker than i had ever been in less than two minutes but it also made another group of patients much better and one of them used to be the moderator on this list .. forgot if it was alpha or beta but sublinqual form and when years later retried with the same result ..good luck tealk > [Original Message] > From: yakcamp22 <yakcamp22@...> > < > > Date: 5/2/2006 8:47:31 PM > Subject: Re: Dr. Kerr & Interferon > > Cat- > > Did you have white blood cell counts that were low or abnormal? > Maybe interferon works only for a subset, like PWCs w/ chronically > low WBC count, for example. > > On another matter, regarding the other posts re this thread, would > it be possible to send the Chia info. to Dr. Kerr and get his > response. I would do it but there are many more knowledgable folks > on this list than me. > > Mike C > > > > > > > > I tried interferon. It did nothing. > > > > > > > > > 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...
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