Being Alive Newsletter, Being Alive/Los Angeles - May 1993
Charles R. Caulfield

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 of the 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. 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 them 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 US 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 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 personally know 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 it's 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.

Never in a million years would I have believed nine 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 how 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.

(This article was originally printed in the San Francisco Sentinel on January 7, 1993. Charles Caulfield is a staff writer for the San Francisco Sentinel and was a board member of The National Association of People with AIDS (NAPWA) for five years. )
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