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New York Times
Holding AIDS at Bay, Only to Face 'Lazarus Syndrome'
DAVID FRANCE
October 6, 1998
JOHN LESNICK spent much of the time from Thanksgiving 1995 to Valentine's Day 1996 lying flat on his bony back at Roosevelt Hospital in New York, confronting a royal flush of AIDS ailments -- lymphoma, mycobacterium avium complex, microsporidiosis and esophageal thrush. He had few visitors, his closest friends were already gone, and zero T-cells.

His doctor suggested stopping all medication to let nature take its course. It seemed that his time to die had arrived. "At one point, I had dragged myself to a scale outside my room, and it said 100 pounds," recalled Mr. Lesnick, a printmaker by training. "And that's when I sort of said, 'Well, this is it.' "

But today, Mr. Lesnick, 45, is living one of the success stories of protease inhibitors, the powerful anti-H.I.V, compounds introduced in 1996. He is swimming again, doing volunteer work and making longer-term plans for the first time since he learned he had H.I.V., which causes AIDS, in 1985. The death pall has blown away.

It is surprising, then, that Mr. Lesnick finds himself under more psychological stress now than ever, an emotional whipsaw that he is addressing with a counselor.

"On the surface it's wonderful to walk down the street, see myself in a store window and think, God that's me," he said. "But there's an awful lot below that surface. All my friends are dead. I haven't worked since 1992. I haven't had sex in six years. How do you begin being a human being again?"

Mr. Lesnick's doctor said the reaction is common. "Now that John is feeling better, he has realized that AIDS has destroyed his life," said Dr. Howard Grossman, a New York AIDS specialist. "All of my patients who have spent as much time struggling to survive as he has are now allowing themselves to be a little angry about it."

Still, Mr. Lesnick's new future, while stretching further toward the horizon than he had ever expected, remains uncertain. He is not cured. He is simply healthier because of his treatment.

"He doesn't trust what's happening to him," Dr. Grossman said.

In half the people taking protease inhibitors, the drugs have pushed H.I.V. levels below science's ability to detect them and caused the body's disease-fighting T-cells to rebound. As a result, AIDS death figures have dropped by half, and the constellation of opportunistic infections like the ones Mr. Lesnick was battling just three years ago have tumbled by 60 percent, according to a study by the Johns Hopkins University in Baltimore.

Despite their renewed health, many people with AIDS have been gripped by depression, acute anxiety -- especially over financial issues -- and other, unexpected emotional problems, clinicians and therapists said. Some patients have ended long-term romantic relationships and others have become suicidal, an odd response to being given a reprieve from death.

This unique affliction has been called the Lazarus Syndrome after the biblical figure whom Christ raised from the dead, said Dr. Robert Remien, a clinical psychologist and researcher at the H.I.V. Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute. Though no statistics are available, Dr. Judith Rabkin, a professor of clinical psychology at Columbia University, estimated that tens of thousands of AIDS patients may suffer from it.

"This can be more stressful than illness itself," Dr. Remien said. "When you suddenly find yourself facing a much longer-term future, people are left with this feeling of, 'What do I do now? This isn't what I was planning. I have to worry about retirement benefits? I may have to go back to work? I may have to pay off those credit cards?' That is tremendously traumatic and disruptive."

Despite the grueling regimen of pills many AIDS patients contend with daily, Lazarus Syndrome is not thought to be caused by the medications per se, although the rigid medication schedule and side effects can contribute, said Benjamin Lipton, director of clinical services at Gay Men's Health Crisis in New York.

Experts say the Lazarus Syndrome is unique to AIDS, with no easy parallel to other illnesses. Perhaps the closest comparison is to the trauma suffered by people freed from German concentration camps, said Dr. Linda Moneyham, a researcher at the University of South Carolina who is studying the phenomenon. Like many people with AIDS who got very sick, Holocaust survivors watched their families and friends die, and fully expected to follow, but instead were suddenly freed to a precarious and lonely world.

"It all boils down to uncertainty," Dr. Moneyham said. "Sometimes even though the known is bad, at least you know what it is and you know what to do about it."

Financial uncertainty, including the question of paying for the costly protease treatment, can often trigger the greatest despair.

Sam P., 42, a Jersey City waiter receiving disability benefits from Social Security since 1994, is typical. He asked that his full name not be used because he has been working off the books in recent weeks. Though he said he feels better, he cannot imagine living the rest of his newly lengthened life on $535 a month from Social Security, $90 in food stamps, and a small rental allowance, in addition to his publicly financed medical care. The anxiety has sent him to a psychotherapist to help him understand why he cries frequently. "Feeling better is something that we have to learn to adjust to and work with," Sam said.

For those who develop clinical depression, doctors are careful in prescribing antidepressants, because some interact with certain AIDS medicines. To address the other issues, AID Atlanta, that city's oldest AIDS service agency, last year designed a program to help clients cope with their emotions. The counseling program, called Reconstruction, leads patients through topics like "Hype vs. Hope," and "Wake Up and Smell The T-Cells" in an effort to ease what Mark King, the program coordinator, called a return to the rat race.

"We began to see more depression among these clients now than when they thought they were going to die," Mr. King said. "They had spent years tying up loose ends, making that trip around the world they always dreamed of, planning a funeral. And in a perverse way the rug was pulled out from under them."

Reconstruction, which is offered in 10 other cities, including Kansas City, Mo., and Jersey City, N.J., is sponsored by a grant from Hoffman-LaRoche, one of several pharmaceutical companies that make protease inhibitors.

Workshop leaders around the country are noticing commonalities. One surprise, Mr. King said, was a huge break-up rate among people whose health had rallied. "They come to the realization, sitting at the breakfast table one morning, that 'if I'm going to live another 20 years, it's not going to be with you,' " he said.

That is precisely the way the thought struck Bruce Brothers, now 39, who is H.I.V. positive and had lived for nine years with a man who is H.I.V. positive. "When we got diagnosed, that was the moment I knew we would die together," he said. "We had rings that were inscribed, 'Forever Bruce,' and 'Forever Dan.' "

But when protease inhibitors brought them both back to life, Mr. Brothers said, "We both came to realizations together that in health, this was not the relationship for us." The two formally separated late last month.

Mr. Lesnick, the New York printmaker, now weighs 145 pounds, which he called "my ideal size." Although he has not responded ideally to protease inhibitors, they have nonetheless reduced his viral load from a high of 280,000 to 9,000 per cubic milliliter of blood, while his T-cells have shot up from zero to near 65, still well below a normal count of more than 600. He is feeling much better. He has the strength now to volunteer regularly for three local AIDS organizations. "Every morning I stand up and get out of bed and I'm thrilled," Mr. Lesnick said. "But life is never back to normal."



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