"I think there's been a decided change, particularly with people who have been affected by the AIDS virus," said Jefferson, who runs a San Francisco-based organization on alternatives called Project Inform. "I've never felt that MD stood for 'medal of deity.' "
Some experimenters have thrown themselves fervently into the search for a cure: One man called it his quest for the Holy Grail. Loxley characterized his research as a consuming hobby that he looks forward to after work--like a banker's golf game.
But others bitterly resent their predicament. They feel they have been driven to recklessness for lack of a better choice. They suggest more energy would have gone to finding a cure for AIDS had it not begun as a disease confined largely to the gay community.
"I very much knew that I was breaking the rules," said Steve, the DNCB user who asked not to be identified by his full name. "I think it's appalling that people are doing this. The only thing more appalling is that they are having to do it."
"My question is, would this entire matter be being handled in this way were it cutting a swath across society overall?" he asked. "I think the approach by the medical community, especially as dictated at the federal level, would have been much more responsive.
"The desperation would have been felt far more dearly."
He said he had received numerous calls for advice on use of DNCB from people already enrolled in controlled drug studies--people who, in their desperation, were willing to risk adulterating the results and perhaps even getting thrown out of the studies.
Doctors, too, find themselves in a perplexing position.
Several physicians who see a lot of AIDS patients said they have attempted to offer guidance to patients who have decided to try unproven therapies, agreeing to monitor their progress if the patients follow their advice and if the treatments appear to be doing no harm.
"I am a believer in the importance of instilling hope," said Dr. Michael Scolaro, medical director for AIDS research at the Los Angeles Oncologic Institute at St. Vincent Medical Center, who is treating about 300 patients with AIDS or AIDS-Related Complex and conducting an FDA-approved drug study.
"Some will try totally unknown things because they've tried all the others and they didn't work," said Scolaro, a psychiatrist. "I want to make sure they're not doing anything that will cause grave complications. But, these are people who are diseased and dying. They're not going to sit around and wait for some double-blind study. Their attitude is not cavalier. Their attitude is survival, and I absolutely agree with them."
Scolaro suggests Western medicine will have to adapt to AIDS: "Medicine can no longer be totally traditional," he said. "One should not knock nutritionists or Norman Cousins or acupuncture or meditation."
Dr. Keith Vrhel, a San Diego physician with a large gay practice, takes a similar view.
"This tends to be, as a group, a very intelligent, well-read population . . . and I think they know more (about alternatives) than the average physician," he said. "So I think it's incumbent upon the physician to listen to their patients, which is what we try to do."
"In a sense, it may be psychological," Vrhel said, speaking of the perceived effectiveness of some alternative treatments. "If they have a sense that they're doing something positive for themselves, they may be less stressed."
Vrhel pointed to recent research indicating a link between people's emotional state and their immune system. Researchers in so-called psycho-neuro-immunology have found dramatic plunges in immune system functioning during periods of stress and bereavement.
Dr. Mervyn Silverman, president of the American Foundation for AIDS Research, said he has found that doctors caring for large numbers of AIDS patients are more tolerant of alternatives than they were with other diseases.
"Doctors feel so frustrated that they don't have the answers in their hands and don't have a lot to offer that they say, 'Go ahead' with some of these things," he said. "That doesn't mean they're going to be supportive of just anything. . . . But they are supportive of some of the more benign things."
Support groups face a similar quandary.
"This puts us in a very delicate position," said Peter McDermott, acting executive director of AIDS Project Los Angeles. "You'd like to tell people about these things. But on the other hand, you don't want to harm anyone. It is an ethical thing, and we're trying to be ethical."
In the last four years, there have been few prosecutions of AIDS quackery cases in California. However, divisions of the Attorney General's Office and the Department of Health Services have both investigated claims that products and therapies prevent or cure AIDS.