From: Billi Goldberg <bigoldberg@igc.apc.org>
Subject: Survival at any Cost (Sentinel Article)
Note: Copyright 1992, Dan R. Greening. Non-commercial reproduction allowed.
Archive-Number: 6739
Organization: unspecified
Date: Fri, 8 Jan 93 21:38:53 PST

I believe that this article is the best piece of writing that Charles
has ever done. It is an honor to know him and work with him. He has 
more courage and fortitude than anybody I have ever met.

Billi
************************************************************************
The following article was printed in the San Francisco Sentinel on 
Thursday, January 7, 1993. It is being posted with the permission of 
the author, Charles R. Caulfield.
************************************************************************

                        SURVIVAL AT ANY COST
                      by Charles R. Caulfield

     Nine years ago to the day of this writing, I was on oxygen in the 
intensive care unit at the Medical Center of the University of 
California at San Diego with what was being called a respiratory 
infection of unknown origin. A young Latino doctor, an infectious 
disease resident, walked into my room. Rather than approaching me, he 
stood and spoke to me from near the doorway. "We have a confirmed 
diagnosis from your sputum cultures, Mr. Caulfield." He was wearing a 
paper mask, so I was unable to detect any emotion on his part as he 
continued, "It's Pneumocystis carinii."

     I didn't exactly know what that meant, but I could tell from the 
tone of his voice it was nothing nice.  He didn't stick around after 
dropping that bomb and left me alone in a deafening silence that is so 
clearly emblazoned in my memory it's as though it happened yesterday. I 
never saw that son of a bitch again. No explanation. It was only later 
that a gay male nurse told me that I had AIDS and explained the 
treatment. I was treated with intravenous pentamidine intermittently for 
a week. They talked about removing my spleen. They didn't have a clue 
how to respond to the underlying disease or even at that point what 
caused it. They could only aggressively treat the pneumonia. I responded 
to the treatment and was released with a suggestion that I abstain from 
having sex.

     The impression left on me by the heartless and fearful way I was 
handed a death sentence gave birth to a skepticism and mistrust for 
American medical profession. This has undoubtedly been the primary 
reason that I remain relatively healthy compared to many people I know 
who have had the disease a much shorter time than I. Out of resentment, 
I looked for alternatives to what was seemingly inevitable at that time, 
namely death within a year. That is, if I was lucky.

     Since that time, with the help of many doctors along the way, I 
tried scores of underground AIDS treatments. AZT was not to come for 
another three and a half years. Any treatment at that point was 
"alternative." Alternative to death. I decided to go for it.

     In the ensuing years, my path was to cross with many, many other 
PWAs who had decided to do whatever it took to fight for their lives. 
Information was shared, compared, and a true underground railroad 
emerged. From Tijuana, Mexico, people were bringing in two drugs, 
Ribavirin and Isoprinosine. One was an antiviral, the other an alleged 
immune stimulant. You could get it from some groups of buyers, but no 
one was sure how to use them in correct dosages. There are people alive 
today who believe that those two substances kept them alive until 
something better came along. Through the work of Project Inform at the 
same time, the U.S. government loosened its guard, and then later its 
restrictions, on the illegal importation of therapeutic agents. Some 
"crazy" doctors were getting together and comparing notes on potential 
treatments. A movement was emerging. People were taking risks. Some 
lived to tell about them.

     A recipe for making a home mixture of egg lipids (AL-721) based on 
research in Israel was widely circulated. An anti-atherosclerosis drug 
(dextran sulfate) from Japan was being imported as an antiviral. 
Extracts from mistletoe, aloe vera and pine cones were imported 
illegally from Germany and Switzerland. It was reported that people were 
painting a photographic industry chemical (DNCB) on their skin to 
stimulate their immune systems. John James in Aids Treatment News began 
chronicling reported developments and options and how one could obtain 
the treatments. Tom O'Connor published a book which, in minute detail, 
gave the then current "possibly helpful" treatment options drawn from 
nutrition, macrobiotics, herbal medicine and western pharmacology. 
Buyers clubs emerged and thrived.

     Over the years, by trial and error, I was able to arrive at 
combinations of treatments which have worked to a greater or lesser 
extent for various periods of time. Most were worthless. Some seemed to 
help for a little while and then stopped. A precious few, when used in 
certain combinations, seemed to push the disease into remission for long 
periods of time.

     It would be a useless exercise for me to state categorically what I 
use since nothing works for everybody. I believe that everybody can find 
treatments which they can afford. The information is available. Finding 
the will and inner strength to take on the challenge is the job of every 
aspiring AIDS survivor and thriver.

     I have no survivor's guilt. I'm not one of the "lucky" ones. I 
worked my ass off learning and trying new treatments and growing. I 
picked and chose from what I thought was useful from my doctor and many 
other sources. I tried AZT briefly in 1987 and was not able to tolerate 
it. So that was never an option.

     It's no accident I have lived this long, of that I am quite 
certain. My willingness to keep my eyes and my mind open to discover and 
to do whatever it took to survive opened doors of opportunity to me that 
I would never have believed possible. Bizarre coincidences and chance 
meeting of people were common along the way. I tried some weird stuff, I 
realize, when looking back.

     Most people who got diagnosed the same year I did died within  six 
to twelve months. Yet, I know personally scores of people like myself, 
who remain healthy and well after living through the most ungodly 
opportunistic illnesses. We're still exchanging information, comparing 
notes and pushing for changes in the system of service delivery. Having 
seen so many people die over the years makes me angry enough to keep 
researching and publishing the notes from the underground guerrilla 
clinics. But its got to be about stuff which people can readily obtain 
and afford, otherwise, what good is it? Nothing is worse than reading 
about a clinical trial of a potentially useful drug and not meeting the 
eligibility criteria, or of a new treatment and not being able to afford 
it. It's still just as it was in the beginning of the epidemic. People 
need nontoxic treatments and they need them now! Effective ones. 
Affordable ones. Treatments they can research and start on right away. 
Treatments that won't kill them. And most importantly, accurate 
information on options they are not likely to hear about from their 
doctor. 

     I believe in conventional western medicine, but it alone has not 
offered a viable solution to AIDS so far. A candid, ongoing exchange 
among PWAs outside the influence of the "non-profit" agencies is 
critical to our survival. We must bear the consequences of how these 
dollars are spent, therefore we must have input into how those decisions 
are made.

     Never in a million years would I have believed 9 years ago that I 
would have lived even half as long as I have. I'm thirty- six years old 
and have been diagnosed with AIDS for a quarter of my lifetime. I have 
been infected with HIV for only God knows however long. 

     My moment of truth came in that hospital room in January 1984, when 
I got just angry enough to begin to question everything. Ruthlessly, I 
gathered information, made treatment choices that felt right for me, and 
passed the information along. It has served me well. I'm counting on 
being around next year at this time to take another look back.

Newsgroups: sci.med.aids