Sick of the World

Two hours southeast of Dallas, on a dusty tract that could double for the moon, live 10 people who are allergic to the world. They almost never leave their ramshackle row of RVs and trailer homes, and visitors are even rarer. Extreme isolation is the only effective treatment that they have found for one of the most mysterious and controversial ailments in modern medicine. Like 30,000 other patients before them since the 1970s, they have come to North Texas because they believe one unorthodox physician — the man behind this barren, dystopian commune — can make them well again.

For Suzanne Lippuner, a tan, fit, 45-year-old, the path here started years ago, in Los Angeles, when she developed a series of symptoms for which her doctors couldn’t find a cause. At first she started feeling constantly fatigued. Later, the smell of certain chemicals began to irritate her. Then simply being in the presence of those chemicals made her weak and dizzy. By the mid-1990s, Lippuner became bedridden and had to live on disability insurance.

It wasn’t until 1997 that Lippuner found someone who could tell her what was wrong. A doctor in New Mexico diagnosed her as having multiple chemical sensitivity (MCS), a kind of allergy to a broad spectrum of common chemicals and pollutants, even in extremely low levels—chemicals like household insecticides, formaldehyde (often used to treat wood used to build furniture), and laundry detergent. Her symptoms worsened until, in late 2001, her doctor referred her to one of the world’s leading chemical sensitivity specialists: Dr. William J. Rea of Dallas.

In retrospect, Lippuner says, her trip to Dallas was the beginning of her recovery. When she arrived at Rea’s clinic, the Environmental Health Center, he ordered a battery of tests to determine her sensitivity to a number of allergens. Because Lippuner was so ill, Rea didn’t follow his standard procedure, in which a technician would inject a substance under her skin and record the reaction. Instead, vials of different substances were held to her arm. If Lippuner tensed her muscles, she was considered allergic to the vial’s contents.

Based on the results, Rea diagnosed Lippuner as a “universal reactor”—someone who is allergic to minuscule amounts of nearly everything, even electricity. He prescribed antigen shots made from extracts of cotton, diesel fuel, and more than a dozen other substances. He also told her to flee the toxic world that had made her sick. Lippuner moved to Ecological Housing, that desolate colony where Rea’s sickest patients live in trailers, RVs, and sheds that are lined with porcelain to keep out the allergens. There, she took up a simpler life—one that revolves around boiling and line-drying her laundry, injecting her regimen of antigens, and taking long, solitary walks.

“I’m finally becoming independent again,” Lippuner says one afternoon last October. We are standing 15 feet apart, to protect her from the laundry detergent residue on my clothes. Before I can ask another question, she steps away. “We’re going to have to stop,” she says, pointing at my tape recorder. “That’s giving me a headache.”

If multiple chemical sensitivity were a widely accepted diagnosis, like leukemia or diabetes, 67-year-old Rea would be a distinguished physician. He’s the author of the largest textbook to date on the disorder (which he calls simply chemical sensitivity). He studied under the late Dr. Theron Randolph, who, in the 1950s, was the first doctor to propose a comprehensive theory of chemical allergies. And he runs one of the largest chemical sensitivity clinics in the world, claiming to have treated 30,000 patients since 1974.

MCS is a controversial diagnosis to say the least. Although research on the syndrome has been inconclusive, many scientists contend that it’s psychogenic, meaning the cause is psychological. But the symptoms are real to people who have MCS, a group that includes Rea himself.

Rea, who grew up in Ohio, came to Dallas in 1962 as an intern at the University of Texas Southwestern Medical School, where he earned a reputation as a tireless worker. “After everyone else had run out of gas, Bill would come pushing in a gurney with another patient,” says Dr. Walter Wyrick, a retired dermatologist who worked with him. “The guy absolutely did not know what sleep was.” Later, as a resident of thoracic and cardiovascular surgery, Rea was often the last man standing at the end of his 36-hour shifts. His ambition paid off. In 1968, after finishing his residency, he was named chief of thoracic surgery at Veterans Hospital in South Dallas.

Yet only a few years later, his career took an unexpected turn. In 1970, his 3-year-old son Joe developed severe asthma and serious allergy-like symptoms. But the boy didn’t respond to traditional treatment, and none of the doctors he visited could pinpoint the problem. So Rea started his own research, looking for an explanation. Eventually he came upon a series of books and articles written by Randolph, an unorthodox Chicago allergist who originally proposed the idea that people can be allergic to chemicals, even at levels far lower than normally considered safe. Randolph, who died in 1995, was a renegade in medical circles. He was kicked off the faculty of Northwestern University’s medical school because some colleagues deemed him a “pernicious influence on medical students,” according to the foreword to one of his books. He dedicated the same book to “all patients who have ever been called neurotic, hypochondriac, hysterical, or starved for attention, while actually suffering from environmentally induced illness.”

Despite the controversy surrounding Randolph’s ideas, Rea found in the allergist’s work a plausible explanation for his son’s malady. After having telephone consultations with the allergist, Rea started treating his son with a combination of antigen shots, saunas, exercise, and special diets.

It was about this time, Rea says, that he himself started to feel ill when exposed to certain chemicals, including petroleum products, pesticide residue, and car exhaust. His condition worsened until he was hardly able to handle indoor environments. So he started the same regimen as his son. He also took time off work, began sleeping in his backyard (“It was just me under the stars,” he recalls) and stripped most of the upholstery out of his car.

In 1974, after meeting Randolph, Rea decided to dedicate his career to treating people with MCS. “I thought, here’s a whole group of people who aren’t being helped,” Rea says. “I had the knowledge, so my obligation under the Hippocratic oath was to help.” He opened the Environmental Health Center in Dallas and an affiliated nonprofit research and advocacy organization, the American Environmental Health Foundation. He dedicated his life to understanding and treating the illness, although he continued his practice in surgery as well.

With the patients came criticism. In the late 1980s, several insurance companies refused to reimburse Rea for services performed. Rea and a group of patients filed a class-action lawsuit against Aetna, but a judge dismissed it. There were also increasing questions about the scientific validity of his methods. In the 1980s, Canadian researchers reviewed Rea’s files for a report on MCS for the Ontario Ministry of Health. They found that of 2,000 patients treated at his clinic, only four had tested negative for environmental sensitivity. The report concluded that Rea’s center had “no appropriate controls, and the patients were assumed to have environmental hypersensitivity mainly by being referred to the unit.”

Studies published in journals, including that of the American Medical Association, came to similar conclusions about many of the methods used by doctors such as Rea. At least two studies showed that patients with MCS often had the same allergic reaction whether they were exposed to a supposed allergen or a neutral saline solution.

By the late 1980s, medical organizations around the world were publishing their position statements on MCS. In 1986, the American Academy of Allergy, Asthma, and Immunology issued a statement (which it recently affirmed) harshly questioning the practices of physicians who treated MCS. The report concluded: “The idea that the environment is responsible for a multitude of human health problems is most appealing. However, to present such ideas as facts, conclusions, or even likely mechanism without adequate support is poor medical science.” Six years later, the AMA’s Council on Scientific Affairs issued its own position statement: “Until accurate reproducible and well-controlled studies are available,” it said in part, “multiple chemical sensitivity should not be considered a recognizable clinical syndrome.” Both organizations emphasized that MCS patients are truly suffering, and doctors should treat them compassionately. But the fact that the majority of patients in MCS studies were white, middle-class women, often with histories of mental problems, led many physicians to believe that the best treatment for the disorder was a referral to a psychiatrist.

The skepticism of mainstream physicians wasn’t Rea’s only problem. A handful of malpractice suits were filed against the doctor and his Environmental Health Center. One alleged that a young schizophrenic man from New York, who reportedly thought food “was out to get him,” visited the center in the 1980s, was diagnosed with MCS, and was given a regimen of antigen shots. He later committed suicide. (The lawsuit was dropped because the man’s estate did not have the money to pursue it. Rea and other defendants denied all allegations.)

Still, Rea and others specializing in chemical sensitivity continued their research, dismissing opposition research as flawed, biased, or both. Meanwhile, Rea’s center prospered, drawing people from around the country to the office, across from Presbyterian Hospital in North Dallas. He and the center got a flurry of publicity in the mid-1980s, when Sheila Rossal, a pop singer with the group Pickettywitch, came to Dallas to be treated for MCS. More publicity resulted from Rea being mentioned in a 1982 Newsweek article about the illness. And as his practice grew, so did Dallas’ support network for MCS patients. Around that time a patient named Ray Scott, who was in the gravel business, decided to open Ecological Housing on a piece of property he owned. It provided a refuge for Rea’s sickest patients—the universal reactors like Suzanne Lippuner who comprise 5 to 10 percent of his patients.

One of the first people to move to Ecological Housing was Ann Lloyd, a 73-year-old New Age-talking former socialite who has become a legend in the MCS world. Lloyd, who now lives on a secluded island in the Bahamas, takes a spiritual approach to MCS. “It makes you a better person,” she tells me. “Life is much easier for me now. This has kept me young.”

Lloyd’s inner peace comes after years of struggling. Her symptoms began in 1983, while she worked as a real estate agent in Florida. She started having trouble focusing her eyes. She had headaches and panic attacks. Lloyd went to scores of doctors, but they couldn’t figure out what was wrong with her. It wasn’t until she stepped into a furniture store one day that she finally made the connection. “I’d been in there for a few minutes when I realized they were spraying pesticides right there, with customers inside,” Lloyd says. “Within two minutes, I started to have heart palpitations, and suddenly I knew why I was sick. I was allergic to pesticide.”

An alternative-medicine doctor in St. Petersburg, Florida, treated her sensitivity without success. Lloyd was allergic to so many things in her house that she took to sleeping on the beach. When her doctor found out, he insisted that she sleep in his office on an examining table—but even that made her ill. Finally, when nothing else worked, Lloyd recruited her twentysomething son and his friend to race her to Dallas in an RV, as she sat in the back breathing from an oxygen tank. She spent her first night in a trailer at Ecological Housing, then went to a local hospital for a month, where Rea diagnosed her as a universal reactor.

After her hospital stay, Lloyd returned to the trailer community. At that time, only two other people lived there, besides Ray Scott. The former gravel-excavation site was not her idea of paradise. But she was sick, she says, and it was a place to get better. “After a couple weeks,” Lloyd says, “Dr. Rea asked me how I was doing down there, and I told him, ’I think it’s saving my life. I’m finally sleeping. What more could you want?’” She stayed 10 years.

But not everyone who has been treated at Rea’s Environmental Health Center shares Lloyd’s enthusiasm for the place. Probably the most interesting case study to pass through the center is Dr. Don Jewett, now professor emeritus at the University of California at San Francisco.

Jewett’s illness, like many patients’, started amid heavy stress. During a midlife crisis he developed more than 80 symptoms of mysterious origin, including migraines, diarrhea, light sensitivity, cramps, and a chronic runny nose. He consulted a couple of allergists during several months, but his condition worsened. Eventually, one allergist told him he had to go to Dallas, where he was diagnosed as a universal reactor. Rea recommended that Jewett make his house “safe” (stripped of paint, carpet, and other potential irritants) and that he go on a rotation diet—meaning he couldn’t eat the same food more than once in a period of several days.

When he returned to San Francisco, Jewett took with him a new understanding of life, he says. He changed his eating habits and bought a new house without carpet, formaldehyde-treated furniture, or gas appliances. He also convinced his colleagues at UCSF’s Orthopedic Surgery Department, where he was on faculty, to let him open a small clinic specializing in Rea’s techniques. Jewett also started a research project to determine the efficacy of the “provocation-neutralization” food testing (a centerpiece technique of Rea and his cohorts), in which patients are given samples of food and report whether they experience symptoms.

“I thought I was going to win the Nobel Prize, because I thought I was going to prove the effect of small [amounts of] chemicals on humans,” Jewett says. Not quite. In the study, which was eventually published in the New England Journal of Medicine, he and three collaborators found that patients had the same response whether they were given the allergen or a placebo. (Rea and others protested that Jewett’s results were meaningless, because the doses tested were too low.)

After the test failed, Jewett faced a dilemma. Dozens of his patients had gotten better using the rotation diet. Was it really just a placebo effect? He continued to advocate the diet, but with less enthusiasm and only as one of several options. He gradually noticed a change. New patients didn’t report improvement on the diet. “The doctor’s attitude definitely influences the symptoms,” he says. Eventually, he stopped telling patients about the diet. Instead, when MCS sufferers would come in, he would try to get them to talk about the underlying problems in their lives. If they were willing to discuss them, he often saw improvement. If they couldn’t move beyond their belief in MCS, “then I had no effect.”

Looking back, Jewett attributes his wide range of symptoms to stress. They disappeared when his life stabilized, he says.

Skeptics have watched Rea’s practice through the years, but few more studiously than Dr. Thomas L. Kurt, a medical toxicologist, Food and Drug Administration consultant, and clinical professor at UT Southwestern. His North Dallas town home is filled with books, papers, and studies opposing or questioning MCS, including a few he wrote. “I would guess there are tens of millions of dollars of health costs and disability insurance costs that [Rea] has been responsible for,” he says.

Kurt has seen more than a thousand of Rea’s patients who have been sent by their insurance companies seeking a second opinion. He doesn’t doubt that Rea’s patients are truly suffering—but he doesn’t think it’s because of low-level chemical poisoning. The majority of them had undiagnosed anxiety disorders, he says. The rest had genuine allergies—not to chemicals but to organics like ragweed and animal dander. Many were unwilling to consider the possibility that they didn’t have MCS. In a handful of cases, though, patients agreed to take anti-panic attack medications, and Kurt says they showed remarkable improvement.

Physicians are in a position of incredible power, Kurt says, and they can easily influence a patient’s outlook. “The patient who goes into his office is immediately inundated by a staff covering all aspects of patient care, including a nutritionist, a psychologist, a physical therapist, and an adjacent office that sells devices for living in a chemical-free environment. It’s like brainwashing.”

According to Rea, those and other critiques are attacks from people who fear new ideas. Of the AMA’s 1992 position statement, Rea says, “There are many factions in the AMA. Anybody who’s for or opposed to something may be in the AMA, and they may get a position statement expressing their point of view. That doesn’t mean it’s fact.” As for the strident opposition from most traditional allergists, Rea attributes it to ignorance. In a decade, he says, medical science will widely recognize the effect that extremely low levels of chemicals have on the body. “It’s just a matter of time and education,” he says. He points to his findings that MCS patients have measurable differences in brain chemistry and immune responses. (Critics counter that a wide range of factors, including psychological stress, can cause a difference in brain chemistry.)

For Tommie Goodwin, a Rea patient for 18 years and owner and manager of Ecological Housing who has seen hundreds of the world’s sickest MCS patients, the argument about the cause of the disorder should be done by now. “We do have some people who have mental problems,” she says, “but the disbelievers pick those few and say, ’See, they’re all crazy!’ … I’ve seen all kinds of people come through here. And I can tell you, no one would choose to have this.”

Published in the January 2004 issue of D Magazine