Stalking Dr Steere Over Lyme Disease - Lyme Activists stalking and Harassing Doctors
- From: "georgia" <Jwismille@xxxxxxx>
- Date: 23 Jul 2006 19:23:15 -0700
Stalking Dr Steere Over Lyme Disease
http://www.nytimes.com/2001/06 /17/magazine/17LYMEDISEASE.htm
l?pagewan...
JUN 17, 2001
Stalking Dr. Steere Over Lyme Disease
By DAVID GRANN
ast year, Dr. Allen Steere, one of the world's most renowned medical
researchers and rheumatologists, began to fear patients. It was not so
much the ones he had treated, though he occasionally had to worry
about them too, but the ones who had started to call his office,
threatening him, claiming he was responsible for their suffering. They
insisted that he was denying them treatment for an acute form of
chronic Lyme disease, a strand of the ordinarily more modest infection
that they believed slipped into the bloodstream undetected and
remained there for years, causing joint pain, chronic fatigue,
suicidal depression, paralysis and even death. Affirming their
diagnoses were a growing number of patient advocacy groups,
practitioners and psychiatrists who argued that the disease had become
a full-scale epidemic, a modern-day plague crippling thousands of
Americans.
As the world's foremost expert on the illness, however, Steere did not
believe many of them had Lyme disease at all, but something else --
chronic fatigue or mental illness or fibromyalgia -- and he had
refused to treat them with antibiotics. Many doctors and insurance
companies had followed his lead, and in turn, hordes of patients had
started to stalk him. They showed up at his public engagements,
holding signs that read "How many more will you kill?" and "Steer
Clear of Steere!" They depicted him in the media as a demon, worse
than the spirochetes, the tick-borne bacteria that they claimed
inhabited their bodies and that, because of his restrictive diagnosis,
they could not eliminate.
Early on, he tried to explain why, based on the science, he didn't
believe many of them had Lyme disease and, even if they did, why
long-term antibiotics might not help. But none of it seemed to matter.
On the Web, in virtual worlds Steere did not know or understand,
patients who believed they had the paralyzing illness vilified him.
Egged on by advocacy groups, they infected his sterile world, trying
to destroy his reputation and career.
The New England Medical Center, where Steere has been chief of
rheumatology and immunology for 14 years, had to hire security guards
for his public appearances; a woman in the basement of the hospital
who once protected local scientists from the Unabomber, investigating
potential risks and screening unidentified packages with a bomb squad,
spent hours each week monitoring the threats against him. Now, as
Steere sat at his desk, he read a computer message posted by someone
named Frank that said "Steere Has Been Scheduled For Termination."
The scientific world, of course, has always been consumed by feuds. In
the 19th century, the Hungarian physician Ignaz Philipp Semmelweis was
eviscerated by the medical community for his seemingly obvious
recommendation that physicians sterilize their hands before treating
patients. The simple gesture, which would have saved thousands of
lives, implied that doctors had already caused the death of untold
numbers by infecting them with their germs -- an indictment that was
too great for the establishment to accept. Distraught and devastated
by the fight with his colleagues, Semmelweis, according to medical
folklore, had a nervous breakdown and died soon afterward.
n the past, most medical feuds have pitted doctor against doctor,
scientist against scientist, hypothesis against hypothesis. The new
struggle, which has become one of the fiercest in memory, not only
pits physician against physician but also patient advocates -- and in
tow, thousands of citizens and a coterie of powerful politicians --
against much of the medical establishment. The rise of the Lyme
disease movement -- a populist torrent fueled by mass communication on
the Internet as well as by cost-cutting insurance companies and
bureaucratic H.M.O.'s -- has become a prototype of the modern medical
lobby. The disease, which once consumed patients, has now consumed
doctors. There have been lawsuits, investigations, medical
suspensions, demonstrations, even death threats. And perhaps no man
has been more ravaged than Allen C. Steere, the scientist who first
identified the disease in the United States 25 years ago.
he "journey," as Steere likes to call his odyssey, began on Nov. 20,
1975, when he was still a rheumatology fellow at Yale University and a
patient named Polly Murray entered his office. A middle-aged artist,
she had complained for years of a mysterious affliction -- a
combination of listlessness, pounding headaches and swollen joints
that were so bad at times she had trouble sitting up. Her doctors at
first thought she had lupus or acute rheumatoid arthritis, but all her
tests came back negative. Finally, after years of recurring complaints
and fruitless exams, most of them had reached the same clinical
diagnosis: she was nuts. "You know, Mrs. Murray," one doctor told her,
"sometimes people subconsciously want to be sick."
But Steere seemed unlike her other physicians. A virtuoso violinist
who had played alongside Itzhak Perlman and had given up a music
career partly because he injured a tendon playing basketball, Steere
had a gentle, almost artistic temperament. "He started to ask me a lot
of questions," Murray later recalled, "and I could tell that he . . .
was someone who would listen."
What he heard, though, made little sense: not only had she been sick
with something that wasn't detected by conventional medical tests, but
she also had evidence -- copious notes of case histories that she had
collected on her own -- that indicated that the disease was spreading
among her friends and neighbors. Steere, who had spent two years
researching mysterious outbreaks at the Centers for Disease Control,
told her he would begin investigating the next morning.
Most medical research is like criminal investigations: endless
searches for clues that seem to add up to nothing. Despite all the
heralded breakthroughs in science and technology over the last
century, the body remains largely a mystery; most diseases, including
rheumatoid arthritis, have no known cause or cure.
n the late 1970's, as Steere's team fanned out along the Connecticut
River, about 50 miles away in Westport, Conn., my 11-year-old sister
woke up with tingling in her joints. My father, a cancer specialist,
thought she had some sort of flu, but 24 hours later she couldn't
walk. As my mother and I looked on, my father carried her out to the
car and took her to Stamford Hospital. When he returned with her
several hours later in a wheelchair, I could hear him talking to my
mother in hushed voices in the bedroom. The next day, he took her to a
specialist at Yale, who said that despite negative tests, she probably
had an acute form of juvenile rheumatoid arthritis and might die. He
recommended that my father admit her to the hospital and treat her
with high dosages of steroids. But still unsure why her tests were
negative, my father decided to wait. That night, he searched his
medical books, trying to find out what she had. I could see him in the
study, hunched over his desk, folding the pages in half. Medicine, he
always believed, was like a language: each disease has its own
meaning. But what was a disease that had no name?
While my father conducted his own search, Steere homed in on four
country roads, where one in 10 children appeared to have the sickness.
Though he could not find the source of the outbreak, his team found
several important clues: first, the apparent infection was more
prevalent in heavily wooded areas and in the summertime; second, it
was sometimes preceded by a skin lesion that resembled the red
bull's-eye from a tick bite.
Based on these and other observations, Steere, at the age of 33, hit
the holy grail of medical research: he announced that his team had
discovered a new disease in the United States. Transmitted in all
likelihood by a tick, it was, as his later studies uncovered, one of
the great impostors of medicine, taking on the form of other diseases
depending on where the infection was in the body. As a result, the
symptoms varied wildly: one person might suffer headaches or joint
pain while others, with severe cases, might endure cardiac and
neurological abnormalities, including memory loss and facial
paralysis. In most cases, he and his team concluded after subsequent
studies, the illness could be effectively treated with one or two
courses of antibiotics.
Though many in the medical establishment remained skeptical -- a
researcher wouldn't find proof of the new bacterial agent for another
five years -- the public already hailed Steere as a kind of Magellan
of medicine. Known for his quiet and reserved nature (he liked to
dress up in protective suits and walk through the forest with a
blanket, ...
.
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