Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Dear Tammy; Thanks for answering my question about Rick's gastro history. It's very interesting that his twin also has alopecia but not AIP. I'm trying to keep up with all the new research in autoimmune disease ... it keeps me thinking positive, and I wake up every day wondering whether there will be a new breakthrough. If this turns out to be useful for others in the group, then that's a positive. Sorry if some of the material I write about is a bit complex. But, if it was simple the answer would have been found already. I find that a good way to learn about something complex is to try to explain it to someone else. I don't know of any immune markers in PSC, AIH and PBC of the same type as you have found useful in AIP. Some researchers have suggested that PSC does not fit the pattern of an autoimmune disease; but this seems a bit inconsistent with some other facts. is doing well, thank you, and remains asymptomatic for the most part. Let's hope it stays that way. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 , I saw your email about the possibility of PSC being autoimmune or not. I participated in a pilot program by Dr. Andy Mason. He had treated PBC patients and had enough success to get a world wide trial of treating that disease with anti-retroviral drugs. I was in a pilot of PSC patients. Unfortunately, he only got 3 patients instead of the 10 he hoped for. One received a transplant, one couldn’t handle the Combivir (the drug) and the third was me, so he ended the pilot. He is now in Calgary and I email him occasionally to see if another pilot or trial is being organized. He said sometime in ’05. He is a lone wolf believing that PSC is somehow related to retroviruses. I don’t know any more than that. My doc at University Hospital at Denver (Dr. Trotter) said that Dr. Mason has done some “interesting work” and spoke favorably of my getting in a trial or pilot if one was conducted again. Just my two cents. Sam PSC 2001, listed 09/03 and 05/04 -----Original Message----- From: Sent: Thursday, March 31, 2005 8:04 PM To: Subject: Re: Tammy / AIP info Dear Tammy; Thanks for answering my question about Rick's gastro history. It's very interesting that his twin also has alopecia but not AIP. I'm trying to keep up with all the new research in autoimmune disease ... it keeps me thinking positive, and I wake up every day wondering whether there will be a new breakthrough. If this turns out to be useful for others in the group, then that's a positive. Sorry if some of the material I write about is a bit complex. But, if it was simple the answer would have been found already. I find that a good way to learn about something complex is to try to explain it to someone else. I don't know of any immune markers in PSC, AIH and PBC of the same type as you have found useful in AIP. Some researchers have suggested that PSC does not fit the pattern of an autoimmune disease; but this seems a bit inconsistent with some other facts. is doing well, thank you, and remains asymptomatic for the most part. Let's hope it stays that way. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2005 Report Share Posted April 1, 2005 Dear Sam, Since you are in contact with Dr. Mason you might want to let him know about the PSC researchers conference in September at NIH. Lee > , I saw your email about the possibility of PSC being autoimmune > or not. I participated in a pilot program by Dr. Andy Mason. He had > treated PBC patients and had enough success to get a world wide trial > of treating that disease with anti-retroviral drugs. I was in a pilot > of PSC patients. Unfortunately, he only got 3 patients instead of the > 10 he hoped for. One received a transplant, one couldn’t handle the > Combivir (the drug) and the third was me, so he ended the pilot. He is > now in Calgary and I email him occasionally to see if another pilot or > trial is being organized. He said sometime in ’05. He is a lone wolf > believing that PSC is somehow related to retroviruses. I don’t know > any more than that. My doc at University Hospital at Denver (Dr. > Trotter) said that Dr. Mason has done some “interesting work” and > spoke favorably of my getting in a trial or pilot if one was conducted > again. Just my two cents. > > Sam > > PSC 2001, listed 09/03 and 05/04 > > > > Re: Tammy / AIP info > > > > > Dear Tammy; > > Thanks for answering my question about Rick's gastro history. It's > very interesting that his twin also has alopecia but not AIP. > > I'm trying to keep up with all the new research in autoimmune > disease ... it keeps me thinking positive, and I wake up every day > wondering whether there will be a new breakthrough. If this turns out > to be useful for others in the group, then that's a positive. Sorry > if some of the material I write about is a bit complex. But, if it > was simple the answer would have been found already. I find that a > good way to learn about something complex is to try to explain it to > someone else. > > I don't know of any immune markers in PSC, AIH and PBC of the same > type as you have found useful in AIP. Some researchers have suggested > that PSC does not fit the pattern of an autoimmune disease; but this > seems a bit inconsistent with some other facts. > > is doing well, thank you, and remains asymptomatic for the > most part. Let's hope it stays that way. > > Best regards, > > Dave > (father of (19); PSC 07/03; UC 08/03) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Re: Re: Tammy / AIP info Will do. Thanks. Sam Dear Sam, Since you are in contact with Dr. Mason you might want to let him know about the PSC researchers conference in September at NIH. Lee Quote Link to comment Share on other sites More sharing options...
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