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Help for Those Waiting in Fear : AIDS: People who have tested HIV positive but show no symptoms of the disease gather in groups at Sherman Oaks hospital to prepare for the inevitable.

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TIMES STAFF WRITER

Many of the men who come to the two weekly AIDS support groups at Sherman Oaks Community Hospital are not sick. They have not gotten the cancers, pneumonia or other disorders associated with AIDS or AIDS-related complex.

But these men have tested positive for HIV, commonly known as the AIDS virus. Unless there is a research breakthrough, most--if not all--of them are expected to eventually come down with an AIDS-related disease.

Although they might not develop these diseases for several years after being infected, the possibility of becoming seriously ill is always with them.

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“On my bad days I picture myself as a sort of walking time bomb,” said one of the men attending a Wednesday night support group at the hospital. Like about a third of the men attending the group that night, he was asymptomatic. “You can just imagine the stress involved. We may not technically have AIDS, now, but we need support too.

“It’s too hard to do it alone.”

HIV-positive, asymptomatic people are joining support groups in increasing numbers, said Russell White, a volunteer with Being Alive, the AIDS service organization that sponsors the groups at the Sherman Oaks hospital. White trained as a volunteer in the buddy program at AIDS Project-Los Angeles and came over to Being Alive to learn about running support groups.

“When I started working with the groups about two years ago, almost all the men who came to them had AIDS or ARC, or at least the symptoms of one of the AIDS diseases,” said White, who a year ago founded the Wednesday night group, where information is exchanged and problems talked out. Gay men make up the vast majority of participants at the free meetings. On rare occasions, HIV-positive women attend.

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“People come to the groups because there is much more information available now about HIV status and they want to keep up on it,” said White, who makes his living as a swimsuit designer and has tested negative for HIV. He did volunteer work at AIDS Project-Los Angeles for several years before getting involved with the Being Alive groups.

“Some come just to talk,” he said. “They find they can’t relate as much to their HIV-negative friends as they would like to. Here, they are among people who know what they are going through.”

The group proved so popular that last month a Monday night meeting was started to ease overcrowding. Each group averages 20 to 25 people at each session.

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Being Alive is just one of several organizations that provides support for HIV-positive people. The Gay and Lesbian Community Service Center in Hollywood sponsors a weekly support group exclusively for HIV-positive people who have not developed AIDS or ARC. The HIV-positive asymptomatics are also welcome at emotional-support groups sponsored by the Shanti AIDS service organization in various parts of the city, including the San Fernando Valley. “Once people find out they are HIV positive, we now try and steer them toward a group,” said Sheri Lin, health education coordinator for Shanti. “They need a safe place to get information, talk, put things in perspective.”

Being Alive, founded in 1986 by men with AIDS, sponsors 12 support groups throughout Los Angeles, including those at the Sherman Oaks hospital.

On a recent Wednesday at 7 p.m., 22 men crowded into the second-floor conference room at the hospital. Even though the group has been split in two, there were still so many men attending that there was not enough space for everyone to sit in a circle. A few had to sit on tables against the walls.

White began the meeting with updates about men in the group who had been hospitalized. Then, one by one, each man talked about his week and what was on his mind.

Invariably, each began with some version of “I’m doing fine” or “I had an OK week,” even if what followed was an unnerving tale of physical and emotional travails. Some of the men with AIDS talked about the infections, lesions, profound fatigue, depressions and anger they suffered. They discussed in detail the various treatments they were undergoing and they shared medical information.

There was a lot of laughter. One man gave a hilarious description of a visit with his psychologist that he said turned into “Restoration comedy.” Quips flew around the room at times.

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Seven men at the meeting talked about being asymptomatic.

“Every time I get a little lump on my tongue I think, ‘Will this be the big event?’ ” one said. “But I have been fine. In the 4 1/2 years that I’ve known I’m positive, I’ve had nothing more than a flu and a rash that I probably would have had anyway.”

During the break halfway through the two-hour meeting, he stood in the hallway and talked about why he comes to the group.

“It’s just nice to share with people, because I’ll probably be there before too long,” he said. Like many of the men in the group, he is taking the drug AZT to help ward off the development of serious symptoms. But recent blood tests have shown that his immune system is under strain.

“I’m hoping for the best, but I’m also trying to emotionally prepare myself for the worst,” he said. “When I come here and listen to some of the things that happen to the guys with AIDS, I can see what might be coming for me.”

Like several men in the group, he takes antidepressants.

One earnest man talked about how depression has clouded almost everything in his life. But he spoke in a manner so droll that his successive tales of woe started to become funny, in the manner of a sad sack comedian.

He finally broke into a laugh as he realized how funny it all sounded, and everyone joined in. But he did speak with seriousness about the problems of his current condition. Because he is not classified as having AIDS or ARC, he does not qualify for workers’ compensation and other insurance and government benefits available to those who have been diagnosed with those conditions.

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But he has suffered ailments, physical and mental, that were probably caused by HIV.

“It’s like being in the middle because sometimes you can feel very bad, almost as bad or even worse as someone with full-blown AIDS,” he said. “I’ve asked doctors and they have told me that AIDS and ARC are just advanced HIV disease. But until you cross that line you’re sort of in limbo.”

He has noticed, lately, that his sense of balance sometimes seems off. This could be just a product of stress or a mild disorder. But it could also be a sign that he has a brain condition serious enough to reclassify his disease as AIDS.

“Sometimes I am just tempted to go have a brain scan, because then they might find something that will be a diagnosis of AIDS,” he told the group. Then he was quiet for a few seconds.

“I guess,” he continued, “I’m not quite ready for that yet.”

The group broke up and the men started to head for the parking lot or to nearby restaurants for a late dinner. Some lagged behind, talking, including one man who had come to the group for the first time. He is a teacher who has not told anyone at work, and few of his friends know that he is HIV-positive.

“I just have not wanted to do that yet,” he said. “I’m not sure they would understand. Until it happens to you, you don’t really know how it feels.

“I come to these meetings basically to meet people and talk. You meet someone in a social situation and you say you are HIV positive, and that is the end of that. Everything is different.

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“I feel a lot more ease, now, being with other people who are like me.”

The new Monday night group is led by Mike Huddleston, an HIV-negative man who makes his living as the manager of a K mart store. He also received his initial training at AIDS Project-Los Angeles. His group is different, in tone, than White’s. On Mondays there is less technical medical talk and more emphasis on the emotional side.

Although there were the usual announcements about men in the hospital and stories about bad things that happened during the week, the atmosphere was lighter, more playful. Some of the talk centered on romance.

Several of the men in the group said they were hoping to find new boyfriends. “Just because you have this thing doesn’t mean you stop living,” said one of the men with AIDS.

One man, who has been HIV-positive for almost seven years but free of symptoms, brought his boyfriend to the group. He was beaming as he made the introductions. They had met last year.

“The second or third time we got together I knew it was going to click, so I told him I was HIV-positive and asked if that was a problem,” the group member said. “And he said, ‘No, as long as you take care of yourself and let me try to help you take care of yourself.’ ”

One of the asymptomatic men announced that since he had last attended the Monday night group, he had gotten married. This brought a round of applause and shouts of “congratulations.”

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This man had been an intravenous drug user in the early 1980s. He had also occasionally had sexual relationships with men during that time, so he was not sure whether he had been infected with HIV through his drug use or through sexual contact.

He was tested in January, 1987, because the woman who is now his wife said she would not sleep with him until he was tested. “I put on a tough act and thought, ‘Well, I’ll show her,’ ” he said. When the test came back positive, he was devastated. His girlfriend stayed with him.

“She is pretty unique, to love the unlovable,” he said.

Since then, they have practiced safe sex, and she has been tested several times, always coming up HIV-negative.

Although it has been three years since he learned of his HIV status, he has told only three people, outside the group and his doctors, of his HIV status. His wife and mother have urged him to keep it a secret.

“That’s hard, sometimes,” he said. “How long does that go on? What if I get sick? Am I still supposed to keep it a secret?

“I don’t want to die and be buried with a lie.”

He told the other men how important the group is to him.

“I need to talk about it, sometimes, with people who understand,” he said. “But I’m not really in the gay community, “ he said, “So I sort of don’t fit in anywhere like that.”

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To this, one of the men said: “Don’t worry about it. We love you just the way you are.”

The married man smiled broadly, shook his head and said, “I love you guys too.”

‘Some come just to talk. They find they can’t relate as much to their HIV-negative friends as they would like to. Here, they are among people who know what they are going through.’

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