Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Gail, Please clear up some confusion that I have. In your post you talk about " us " not having side effects, I infer that you are part of the " us " group with CFS. Did you try Isoprinosine? I thought that you didn't have CFS, that your daughter did. Barb S << It didn't seem to have many severe side effects....most were mild, but it didn't seem to help any of us, either. The company called me two days ago and wanted to meet with me in Boston. I just told them to send material. Their group only was comprised of 19 patients....very small for a study. Maybe they've improved on it.....but it's wait and see right now. I don't think it's harmful to try, though. At least, none of us is the worse for it, but no better, either. Gail >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 In a message dated 6/19/99 9:06:31 PM Eastern Daylight Time, KB46@... writes: << I thought that you didn't have CFS, that your daughter did. >> We both do, but I'm not half as severe as she is. I had an aburpt onset when I was a child, but it didn't worsen. She had a gradual onset from a much younger age, though, like April, I didn't understand a lot of it. It wasn't until she was seventeen that a " virus " started her on a progressive trip downhill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Do you mean prednisone? If it's not prednisone, what is this drug please? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 I was 10 but Dr. Bell thinks my daughter, from her medical history, has had it most of her life. She was a really placid baby....my sister wondered if I should have her tested for retardation!!! She'd sit in one place, as a baby, and play happily for a long time....never crawled....just walked one day! When she began school, she needed naps right after school or was impossible...up to and including third grade! Does any of this sound familiar? She always complained about her legs hurting and stomach aches a bit after meals and never liked really active sports. Of course, the pediatrician attributed everything to growing pains or just looking for more quality time.....and she had plenty of that! But don't blame yourself for not knowing. I'm sure you had similar experiences. Kim told me years later that she never got her " chores " done because she didn't care if she got ice cream from the ice cream man...she hated running after the truck anyway because it hurt. They say so little at the time because they don't know themselves. Let's hope your daughter never gets worse....or if she does, science will have beat her to it with a real treatment. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 In a message dated 6/19/99 10:19:12 PM Eastern Daylight Time, SWNGDABOAT@... writes: << Do you mean prednisone? >> No, it's no relation. Prednisone is a steroid. This isn't. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Gail, How old were you and your daughter at age of onset? ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 I don't believe this is available in the states yet...... << Saturday September 11, 12:20 pm Eastern Time Company Press Release Helix BioPharma Corp.: Isoprinosine Successful In Treating Chronic Fatigue AURORA, ONTARIO--(BW HealthWire)--Sept. 11, 1999--(TSE:HBP. - news) Patients suffering from Chronic Fatigue Syndrome (``CFS'') who were treated with Isoprinosine® showed a significant reduction of their clinical symptoms and a significant improvement in their immune system function. Isoprinosine® is an anti-viral and immune modulating drug. It is approved in Canada and in many other countries for the treatment of certain viral infections and disorders of the immune system. Renowned CFS specialist, Dr. Byron Hyde of the Ottawa-based Nightingale Foundation, presented the results of his seven-month placebo controlled clinical study at a conference in Brussels today. The clinical study showed that 50 percent of the 16 patients in this study who were treated with Isoprinosine® demonstrated considerable improvement of the symptoms as well as increased immune function, including immune memory for common infectious agents. One patient even improved to the point of being able to return to work. Furthermore, there was no worsening of symptoms in any of the patients treated with Isoprinosine®. ``Our study of Isoprinosine® is a milestone in the treatment of CFS. I believe that this medication, with its proven safety record, holds the promise of an improvement in the quality of life for some CFS patients,'' stated Dr. Hyde. Isoprinosine® is distributed in Canada exclusively by Helix's subsidiary, Rivex Pharma Inc. Approximately 500,000 people in North America are believed to suffer from Chronic Fatigue Syndrome, many of whom are unable to work due to the debilitating nature of the disorder. Patients typically exhibit impaired cognitive ability, profound fatigue and disregulation of the immune system. Isoprinosine® is a registered trademark of Newport Pharmaceuticals Ltd. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 lemme see if I can foreward this thing to the list...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Hi Ann, Where is this small blurb, did I miss an earlier post? Thanks. Regards, . Isoprinosine > From: SWNGDABOAT@... > > HI, > I saw a small 'blurb' about this (new?) med MD's are using for CFIDS > treatment and wondered if anyone has had any experience with it? There was a > 50% " success " rating w/it's use.....to the point where some patients were > well enough to return to work. Then I realized the " clinical trial " published > was with only 8 people, so we're talking 4 people felt better....even so, if > even ONE " got well enough " to return to work......impressive. Also, > supposedly no one taking it " got worse " ...just wondering if anyone had any > info or has heard anything. Thanks! Ann > > > 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 October 14, 2003 Report Share Posted October 14, 2003 Thanks ! good to see Dr Hyde involved. Is this something that might be a possibility for our kids? doris land <cut> Clinical Improvement in Chronic Fatigue Syndrome Is Associated with Enhanced Natural Killer Cell-Mediated Cytotoxicity: The Results of a Pilot Study with Isoprinosine® Journal: J of Chronic Fatigue Syndrome, Vol. 11(2) 2003, pp. 71-95 Authors: Francisco -Mitoma, MD, PhD, FRCP©; Eva Turgonyi, MD; Ashok Kumar, PhD; Wilfred Lim; Louise Larocque; Byron M. Hyde, MD //message trunctaed// Quote Link to comment Share on other sites More sharing options...
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