AIDS : The Doctors : They’re Not Saying ‘No’ to Alternate Remedies

I believe patients who get actively involved in their own care do better. And if a patient wants to try various things I go along with them as long as what they try won’t hurt them. Like acupuncture and herbal teas. If they ask me, I tell them I don’t think they’re of any value. But the last thing I would want to tell them is ‘I know they don’t help.’ Because I don’t know that.

--Dr. Neil Schram, Kaiser internist

Like Dr. Neil Schram, many doctors who treat AIDS patients appear increasingly tolerant of alternative treatments for the disease. They’re not saying “no” to remedies they believe won’t be harmful.

But they’re not saying “yes” to snake oil, either.

“The doctors obviously do not want their patients taking anything that would conflict or interact with their treatment or interfere with promising therapy,” said Dr. Mervyn Silverman, former director of the San Francisco Health Department and current president of the American Foundation for AIDS Research.

“But physicians who are caring for many AIDS patients are a lot more open (now),” he said. “They’re saying OK to visualization, acupuncture, herbal remedies, things like that.”

“I certainly believe in the concept of a positive approach (to the disease),” said Schram, former director of the disbanded Los Angeles City/County AIDS Task Force. “It does make a difference.”

Some of Schram’s patients have attended seminars and weekly sessions with Louise Hay, a Los Angeles metaphysical counselor, he said. Others have gone through the AIDS Mastery weekend workshops started by Sally Fisher of Northern Lights Alternatives in Hollywood or the “Experience Weekends” run by Los Angeles clinical psychologist Rob Eichberg.

Hay, Fisher and Eichberg also conduct their seminars and workshops in many other U.S. cities and several foreign countries.

Attendance at Hay’s Wednesday AIDS seminar at Plummer Park in West Hollywood has grown to about 450 people each week. She started the group in February, 1985, with six male AIDS patients. She accepts contributions for the Wednesday seminars, but there is no actual fee.

Hay also sells an AIDS tape and a video and is currently finishing a book promoting a positive, self-healing approach to AIDS. She is paid a set fee for her two-day seminars by the group sponsoring the event in each city. The cost to individuals for the weekend seminar ranges from $85 to $150.

Fisher’s three-day Mastery workshop costs $250, but she said there are discount rates and “scholarships” for persons who cannot afford the fee. “We ask people to pay what they can,” Fisher said.

Eichberg, who charges $300 per person for a weekend workshop, has a similar discount fee structure. Both Fisher and Eichberg said that no AIDS or ARC patients ever are turned away because of lack of funds.

“The AIDS Mastery is not about dying, it’s about the quality of life. Do you suffer or do you live your life with quality” is the question, said Fisher, who got into her current metaphysical work after her son, actor Fisher Stevens, was diagnosed with Hodgkin’s disease 10 years ago.

“We tried everything,” Fisher said. “We went to Sloan-Kettering (a cancer hospital in New York City). He had radiation and his spleen removed. We tried megavitamin therapy, yoga, went to Louise (Hay), who was just getting started then. I even took him to a witch doctor. I don’t know what worked. But he’s fine now. He doesn’t have it.

“If the body is going to heal, then emotion and psychological support are crucial,” Fisher added. When there is no hope, people stop trying. . . . I do not advocate alternatives instead of medicine. I think it is a complement (to medicine).”

‘We’re Getting Bigger’

John Hampton, who was diagnosed with AIDS last July, attends Hay’s weekly sessions, and now is a Mastery leader.

“We used to be a small family. You used to know everybody who attended,” Hampton, 30, said of the Mastery weekends, which offer spiritual and practical direction for dealing with AIDS. “But we’re getting bigger and bigger.”

Hampton, who lead a recent Mastery weekend in Laguna Beach, said that more than 1,000 people have attended the sessions in Los Angeles, San Francisco, New York, Chicago and Dallas.

“We’ve done 15 workshops in Los Angeles alone,” he said, “with about 20 people for each weekend.”

AIDS Mastery weekends also have been held in London and Edinburgh, Scotland.

“I had been in a lot of denial, pretending I didn’t have the disease,” Hampton said. “With the Mastery I went from that to totally accepting it and deciding I wanted to heal myself. There is so much support and such a loving group of people in the workshops. There is a lot of spiritual work done.”

Hampton is on a strict nutritional diet, works out at a gym and swims an hour each day. “I do visualization and meditation every day, too,” he said. “The only thing we really have control of in this life is our thoughts.”

Hampton also said he has read everything he can find about alternative cures, alternative drugs--”what’s out there about AIDS. That’s the first thing I tell people to do--get their hands on everything they can and read and decide what they want to pursue.”

Hampton also follows some of the advice of San Francisco family physician Dr. Laurence Badgley, whose book, “Healing AIDS Naturally: Natural Therapies for the Immune System,” is popular among AIDS and ARC patients looking for alternative therapies.

Badgley began studying natural therapies in the early 1970s, he said, and last year published his AIDS book. “I began to see what the natural therapies could do,” Badgley said, “and what I couldn’t do with my prescription pen.”

Badgley has a clinic in San Bruno, south of San Francisco, and also a Natural Therapies Medical Clinic in affiliation with Sierra University in Santa Monica. Between the two, he has about 100 AIDS/ARC patients, he said, whom he is monitoring for a study.

Badgley advises “a total program with equal emphasis on . . . mind, body and spirit.

“I can’t give a rubber stamp and say what to do exactly to people, but I can guide them,” Badgley said. “We are constantly putting ourselves out of business because we train people to help themselves.”

Alexandra Wolf, who lives in Hollywood, was diagnosed with ARC in September, 1985, and has put together her own healing program. “I did a lot of alternative things before, but I spent almost all of 1986 going on the bus or talking on the phone trying to find somebody who knew something,” she said.

“I have a lot of anger right now about conventional medicine,” added Wolf, a woman in her 30s who, she said, contracted the virus from a bisexual lover. “I really think they (doctors) resent my quest for preventive alternative medical treatment.”

Under her self-help program, Wolf takes “a whole lot of amino acids,” drinks tea made from Brazilian tree bark, gets acupuncture three times a week, meditates with crystals and does visualization. She also has gone to psychic healers.

Wolf is currently writing about alternative treatments for AIDS, and sometimes advises other people who have AIDS or ARC. She said her last blood test indicated her T-cell count had come back to almost 1,000. It was 345 when she was diagnosed with the virus.

“I tell everyone I am not a doctor or a nutritionalist,” Wolf said. “I have no degrees and no initials after my name. But I can tell you what I’m doing and it’s working for me.”

Dr. Robert Brooks, a Los Angeles physician who has treated about 300 persons with AIDS since he opened his practice in 1982, supports combining some alternative practices with traditional Western medical procedures.

“We hear a lot about vitamins and supplements,” Brooks said. “I have patients bring in what they want and take a look at some of the things, to make sure they’re doing nothing harmful. And some go to a nutritionalist.”

Until recently, Brooks ran monthly AIDS update seminars called “Being Well--Being Gay,” which featured speakers discussing current medical treatments for the disease, giving nutritional advice and meditation programs.

“We gave those up,” he said, “because the gay community is just saturated with information. There are so many places for people to go and the level of awareness and education (about AIDS) is incredible. Sometimes the patients know more than most physicians.”

Now Brooks and registered nurse David Kessler have begun a series of AIDS educational seminars directed toward the heterosexual community.

“We’re trying to educate the non-gay community,” Brooks said. “That’s what is needed right now. Our main target is the young people. And we’re trying to get the singles to come. There hasn’t been nearly enough education there.”

Brooks and Kessler call their program “AIDS 87” and hold it twice a month, on the first and third Thursday, at Century City Hospital. They have recessed the seminars for the summer, but plan to resume in September.

“We can’t accommodate great big groups, just 20 to 30 people each time,” he said. “We have open discussion and then a question and answer period.”

Brooks also works at the hospital’s special AIDS care unit, which can accommodate 15 patients and has a 24-hour visitation program.

“I think AZT (the only FDA-licensed drug for AIDS patients) has really started changing a lot of things,” Brooks said. “This is the beginning of a whole new spectrum of drugs that are going to be helpful.”

A Lot of Research

“My attitude is that for thousands of people (with AIDS and ARC) we can do more than tell them to take two aspirin,” said Dr. Michael Scolaro, medical director for AIDS research at the Los Angeles Oncologic Institute at St. Vincent Medical Center.

“There is no known cure, but there is a lot of different research being done now,” said Scolaro, who treats about 300 AIDS and ARC and HIV positive patients. “We can identify the secondary infections before they take hold. There are compounds we can try. I have patients on 10 or 15 different compounds.”

Scolaro, a psychiatrist who was on the faculty at USC before going to St. Vincent’s eight years ago, began seeing AIDS patients with emotional problems before he became a clinical researcher as well. In February, he became the first Los Angeles County physician to receive permission from the Food and Drug Administration to do a combined drug study on AIDS patients, using Ribavirin, an anti-viral drug and Thymopentin, an immuno-modulator.

“We have begun investigating compounds that have known effects on the immune functions,” Scolaro said. “But it’s not the known effects we worry about. It is the unknown ones--those that could cause irreversible complications. It’s my belief that in the early phases of the infection, if we can find an adequate combination of antivirals that can suppress viral replication, then the immune system could show some healthy reconstruction.

Investigate Compounds

“But in more advanced cases of AIDS, the hope is that combinations of effective anti-virals acting by different mechanisms to prevent viral growth will be combined with immuno-modulatory compounds that can replace absent or impaired immune functions. In these cases we need to carefully choose and investigate the compounds.”

Scolaro said that when he is not treating patients, he spends hours reading about alternative treatments for AIDS. “I read everything I can,” he said. “Nutritionalists, vet journals, you name it.

“I monitor my patients and what they are doing. Some go to acupuncture or macrobiotics or meditation,” Scolaro added. “I firmly believe a patient has the right to make decisions about his own life. One patient told me his nutritionalist said taking acyclovir could affect his liver. I said, ‘that’s right. But AIDS can affect your life.’ I do feel a patient should be a participant in his own destiny, unless I feel he’s doing something dangerous.”

Schram believes that physicians and patients alike feel frustrated by AIDS.

“There’s frustration on both parts,” Schram said. “Patients are used to physicians knowing what to tell them. But the problem physicians are facing is we don’t know if these drugs are of value or not. (With AIDS) too often the patient knows more than the physician about alternative drugs and treatments.

“Physicians are frustrated because organized medicine has not done nearly enough (about AIDS), neither have the politicians. We’re also frustrated because most of us are not used to treating such young patients who often die. They’re 20, 30 and 40 years old. Usually the cancer doctors are the ones who see these patients. Most physicians have not had to deal with that before, 20- and 30-year-olds dying--not in this generation of medicine.”