Scleroderma Information » Scleroderma » Finally getting Alt.Support.Scleroderma!
Question:
I’m so glad you’ll be here with us, Ed. For those who don’t know him, Ed is THE original SD net pioneer. He was really the first who gave SD a net presence. His excellent FAQ was used as the FAQ for this newsgroup. He is very knowledgable and articulate. Welcome to A.S.S (I know – we’re acronymically challenged!) Kate – Hide quoted text — Show quoted text -Ed Harris wrote: > To all, > My internet provider FINALLY added an improved news server and I can > now get this news group. I will be actively monitoring the group and > participating whenever I can. > For those of you who do not know me from previous involvement in the > arthritis newsgroups, I am a 50 year old male who was diagnosed with > CREST about 7 years ago. I have taken a very proactive approach to > managing my illness with the help of two supportive physicians and as > a result have been able to implement a number of experimental > treatments and alternative drugs. For the past 4 years I have been > getting regular plasmapheresis treatments which has had a dramatic > effect on the disease, both improving symptoms as well as objective > test results. As an experiment, I was just taken off the treatment > for a number of months to see what would happen. After about 3 months > after I would have normally begun another round of plasmapheresis > treatments, I started getting worse for the first time in four years. > This was enough to convince my physicians and I have started > treatments again. > I have also experimented with antibiotic therapy for two years but did > not see any obvious effect, for example, improvement in my ANA level > so I discontinued treatment about 4 months ago. > I am also the author of the Scleroderma FAQ located at > http://www.he.net/~fredt/faqs/scleroderma. > If anyone is interested I can also send you an article on my own > situation and treatment approach which gives more information than the > brief summary above. > Ed Harris > ehar…@synnovation.com > —————————————————————– > Ed Harris ehar…@synnovation.com > If found listless or depressed, administer chocolate immediately! > —————————————————————–
Response:
To all, My internet provider FINALLY added an improved news server and I can now get this news group. I will be actively monitoring the group and participating whenever I can. For those of you who do not know me from previous involvement in the arthritis newsgroups, I am a 50 year old male who was diagnosed with CREST about 7 years ago. I have taken a very proactive approach to managing my illness with the help of two supportive physicians and as a result have been able to implement a number of experimental treatments and alternative drugs. For the past 4 years I have been getting regular plasmapheresis treatments which has had a dramatic effect on the disease, both improving symptoms as well as objective test results. As an experiment, I was just taken off the treatment for a number of months to see what would happen. After about 3 months after I would have normally begun another round of plasmapheresis treatments, I started getting worse for the first time in four years. This was enough to convince my physicians and I have started treatments again. I have also experimented with antibiotic therapy for two years but did not see any obvious effect, for example, improvement in my ANA level so I discontinued treatment about 4 months ago. I am also the author of the Scleroderma FAQ located at http://www.he.net/~fredt/faqs/scleroderma. If anyone is interested I can also send you an article on my own situation and treatment approach which gives more information than the brief summary above. Ed Harris ehar…@synnovation.com —————————————————————– Ed Harris ehar…@synnovation.com If found listless or depressed, administer chocolate immediately! —————————————————————–
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