Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 kazet8w3 wrote: > Also...that guy that was selling that cure-all supplement ENIVA is on > the immunics site. If I remember correctly he kept changing his name > and re-joining . Then was eventually kicked out of the > group. no... he joined once and posted a few messages, then went away. A while later he was back and when I asked him not to post any more " sales pitches " he quit posting on his own accord. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 OK here's my judgment on this situation... if wants to jump in with different opinion that's fine. In the past we haven't penalized people for having unorthodox views, nor have we made any comprehensive attempt to verify whether our members (or their loved ones) have PSC or not. The thing that we've objected to is people who come here with their main purpose and motivation as selling products of questionable value to our members. I personally haven't seen Keely making any blatant sales pitches, (a tagline on emails doesn't qualify for me) so I don't see any reason to take any action. If anyone disagrees with this, you can send me a *private* email to let me know. If others disagree with some of the claims that Keely (or anyone else) has made, then present your evidence and dispute the claim... don't attack the person. If you think that someone has acted in a manner that justifies discipline let me or know. For now, let's let the subject drop and cool off for a while. I'll keep a closer eye on all sides... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 P.S. I did not join this group to push immunics, which by the way is free. I joined it because of all the Yahoo groups about PSC, this one had the most members and I thought I would be much more likely to get info about PSC in a group with more members. I was in the PBC group when I thought I had PBC (mostly because of the horrible itch on my arms), and I learned a lot from that group - it had about 2,000 members. At that time I devoted my life to getting to the bottom of the itching and the irregular liver function tests I always seemed to have. After 6 months of various physical and spiritual protocols, including Urso, the itching had subsided. I went for a biopsy and ultrasound and was told all my symptoms (nodules and scarring) were gone and I didn't have PBC. Three years later (now) the itch is back. There are times when I suspect it's due to allergies because it always seems to occur in the fall. But it also seems SO closely related to eating that I can't rule out a digestive source. My new gastroenterologist told me he suspects PSC. I'm currently undergoing new tests and have an MRSC scheduled for Nov. 23. So now I want to find out as much as I can about PSC, and to cure this itching once and for all. I have never contacted anyone personally in this group and I have never attempted to push any personal agenda. I have nothing to sell and I have donated my services to immunics for many years without receiving a dime. Love, Keely Keely Stahl Editor-in-Chief www.immunics.org a not-for-profit yoga of immunity reply to: keely@... > [Original Message] > > To: < > > Date: 11/11/2004 8:48:29 AM > Subject: Re: Immunics > > > kazet8w3 wrote: > > > Also...that guy that was selling that cure-all supplement ENIVA is on > > the immunics site. If I remember correctly he kept changing his name > > and re-joining . Then was eventually kicked out of the > > group. > > no... he joined once and posted a few messages, then went away. A while > later he was back and when I asked him not to post any more " sales > pitches " he quit posting on his own accord. > > athan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Keely Good luck with your MRSC. I know what it is like to have a multi year diagnostic puzzle. Been there, done that, with end stage ulcerative colitis. I've been recently told that even liver biopsy results are dicey as they only sample 1/50,000 of the liver to begin with, and PSC tends to localize a lot creating pockets of disease and health. My recent MRI Scan was negative for PSC while most everything else (enzymes, biopsy, ERCP, etc.) were all positive. Best JD UC 1973, Jpouch 2000 Pouchitis 2001 PSC 10-2004 ston City, IL Re: Immunics P.S. I did not join this group to push immunics, which by the way is free. I joined it because of all the Yahoo groups about PSC, this one had themost members and I thought I would be much more likely to get info aboutPSC in a group with more members. I was in the PBC group when I thought Ihad PBC (mostly because of the horrible itch on my arms), and I learned alot from that group - it had about 2,000 members. At that time I devotedmy life to getting to the bottom of the itching and the irregular liverfunction tests I always seemed to have. After 6 months of various physicaland spiritual protocols, including Urso, the itching had subsided. I wentfor a biopsy and ultrasound and was told all my symptoms (nodules andscarring) were gone and I didn't have PBC.Three years later (now) the itch is back. There are times when I suspectit's due to allergies because it always seems to occur in the fall. But italso seems SO closely related to eating that I can't rule out a digestivesource. My new gastroenterologist told me he suspects PSC. I'm currentlyundergoing new tests and have an MRSC scheduled for Nov. 23. So now I wantto find out as much as I can about PSC, and to cure this itching once andfor all. I have never contacted anyone personally in this group and I have neverattempted to push any personal agenda. I have nothing to sell and I havedonated my services to immunics for many years without receiving a dime. Love, Keely Quote Link to comment Share on other sites More sharing options...
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