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From: The.Bird@f38.n135.z1.fidonet.org (The "Bird")
Newsgroups: sci.med.aids
Subject: Trivializing AIDS
Message-ID: <1990Nov14.173746.5515@cs.ucla.edu>
Date: 12 Nov 90 13:18:30 GMT
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I am writing this message mostly because I am a little scared right now (I got 
some poor bloodtest results back) and to caution people NOT TO TRVIALIZE THIS 
DISEASE. We ARE NOT at a point medically where it can be controlled like 
diabetes with daily injections of insulin or a careful diet. Yes, we are 
living "longer" - 6 months longer on average according to the CDC statistics. 
I consider those stats the basis for most news media to trivialize this 
disease.

Aerosol Pentamidine has been the biggest life extender by controlling 
reinfection of Pneumocystis Carini Pneumonia and AZT has extended many PWA's 
lives by months. Most indications are that it ceases to be effective after 12 
to 18 months. It is very toxic to bone marrow. DDc and DDi May be additional 
help BUT WE AIN'T ANYWHERE NEAR A SOLUTION THAT WILL LET US LIVE A LONG LIFE 
WITH AIDS - at least for the majority of us.

 As I have mentioned before, 8 out of 10 of my original AIDS support group 
have died during the last 17 months. Died of various diseases but mostly CMV 
and Kaposi's Sarcoma complicated by multiple infections once their immune 
systems were overwhelmed. My "phone buddy" and I are number 9 and 10. He was 
much like me - having only had PCP once in 2 years. He went off AZT due to 
bone marrow problems and soon after (a couple months) reported to me that he 
had broken out with KS lesions all over his body. KS also attacks kidneys, 
lungs, the liver and just about any other internal organ. He tried Kemron and 
, of course, reported no decrease in his condition whatsoever. He flew to 
Atlanta to be treated by "Dr." Alonso's Hyperthermia and we all know now that 
it was a lesson in incompetantance (being kind) and mis diagnosis. As Mr. 
Shilts said in "the Band Played On", Journalism has become reporting by press 
release. There is no investigative reporting when it comes to AIDS and many 
other diseases.

Why am I saying all of this? I am very concerned that the term of hope "Living 
WITH AIDS" and "AIDS patients are LIVING LONGER" is TRVIALIZING THIS DISEASE. 
I just don't consider a 6 month increase in the average lifespan of a PWA to 
be too exciting - but then I am a Pwa.

Am I living Longer? they tell me so.

Am I living better? I think better than most.

Am I going to live a _long_ life with AIDS? - I doubt it.

Am I going to keep fighting? - Absolutely! even though I do not qualify for 
Ddc (neuropathy) or Ddi (diabetes).

But, please people, don't get too complacent every time some researcher 
releases a new astounding treatment that works in the TEST TUBE. I ain't no 
test tube and neither are any of you. If it doesn't work in my complex body or 
yours - it isn't worth sh*t.

a little bit frightened...."Bird"

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