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Hep C Chat Rooms, Owned by Drug Companies!
April 9, 2003

Hi Lloyd,

Thanks for the reply, I thought I'd drop you another line seeing as I'm
developing star, or is it guinea pig, status with my 5a.  I've seen all but
the pancreas doctor now and have all of the doctors opinions and advice
about my HCV and treatment.  I have great news, they don't want fill me with chemo!

The first UCLA doctor, gastroenterologist, late 50's mainstream guy, seemed not only concerned but positively scared of the suicidal effects of chemo.  So much so I wonder if he'd lost several patients.  He strongly suggested I wait three to five years for a better cure to come along.
(ps I don't have pre existing depression problems)

With my recent spinal meningitis problem I developed blurry vision so I went to an eye doctor, same as above, main stream, older nice regular doctor.  I asked him about vision problems related to HCV and he immediately asked if
I was being put on Interferon.  He said it can cause hemorrhages in the eye resulting in blindness and insists I come back each two weeks once I start.  He didn't like interferon one bit.  If I get bleeding in the eyes I would have to quit the treatment.

I also went to a UCLA hepatologist because my kidneys are making traces of blood, this can be an HCV related issue.  This man is a younger more
enthusiastic doctor also said I should wait for a better cure, because if my
kidneys are shaky now, the chemo might target them into kidney failure. Yesterday I saw my UCLA liver specialist, younger guy, enthusiastic researcher of new HCV treatments, also has seen many side effects of chemo and as I have minimal liver damage, despite being plagued with the daily symptoms, he also suggested I wait.  5a is fairly non responsive, he has never seen a 5a at UCLA it's so uncommon.  He said if I was wanting chemo badly he wouldn't stop me, but he wasn't going to push me into it. Hooray, I think.

So, that's all the good news, the illness isn't going to push me into dangerous treatments and boy am I grateful to the doctors for not trying
to scare me into doing it.  It looks as though you're going to have your first
5a type undergoing your program, and I am looking forward to it.   A question I didn't see covered in the books; Do I need to ease up to the treatment quantities you recommend?   It seems that going from 0 to overnight supplement bombardment might get some reactions.

I had an interesting experience with a chatroom recently on healthboards.net  HCV site.
 Despite being interested in chemo for myself I got banned for asking questions about alternate treatments and for recommending alternate information sites.  I also noticed that anyone who wrote in with side effects from chemo or with a relapse was immediately banned and they never came back.   In fact the only conversation topic is people doing chemo with positive results.  Guess what, it's sponsored by Pegasys.  It appears to be an open forum but it's actually a carefully managed propaganda tool.  That did more to make me run, not walk, away from chemo than I could tell you.

Anyway thanks for listening, I'll be on your books in a week or two.

Regards
R. W.

 

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