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| THE GOOD DOCTOR: Dr. William Rea has dedicated his life to understanding and treating multiple chemical sensitivity. But many doctors still don’t believe the disease exists. |
On the southeastern
edge of Dallas County, in a former gravel quarry, live 10 people who
are allergic to the world. They can’t make trips to the grocery store,
go to the movies, or do any of the things that healthy people take for
granted. They have one of the most mysterious and controversial
ailments in modern medicine. And like 30,000 other patients during the
past three decades, they’ve come to Dallas because they believe one
unorthodox physician can help them get well.
For Suzanne
Lippuner, a tan, fit, 45-year-old Californian, the path to that doctor
started years ago, when she developed a series of symptoms for which
her doctors couldn’t find a cause. She was living in LA, and she
started feeling constantly fatigued. Later, the smell of certain
chemicals began to irritate her. And 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, a colony south of Dallas where Rea’s sickest patients live in
porcelain-lined trailers, RVs, and sheds. (It could pass as the set for
a post-apocalyptic B movie.) 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.
Then Lloyd returned to Ecological Housing. At that
time, only two other people lived there, besides Ray Scott. The dusty,
desolate former gravel-excavation site—dotted with man-made lakes and
within earshot of bulldozers working at an active gravel 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.”
Leif Strickland writes for Newsweek.com and the Dallas Morning News. This is his first piece for D Magazine.
