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Stalking Dr. Steere Over Lyme Disease

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http://www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html

 

June 17, 2001

Stalking Dr. Steere Over Lyme Disease

By DAVID GRANN

 

Illustration by Josh Gosfield

 


 

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Photograph by Jessica Wynne for The New York Times

"We are now in the political phase of the disease, and I am not a very public person," Steere says with deep regret.



 

 

 

Last 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.

In 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.

The "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.

Continued

June 17, 2001

Stalking Dr. Steere Over Lyme Disease

 


 

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(Page 2 of 4)

In 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, trailing for tick specimens), he appeared in Time magazine and The New York Times. When my father stumbled upon his findings in the Annals of Internal Medicine in 1977, my sister's disease had already subsided on its own, as it would in many, but her affliction now had a name -- Lyme," after the town in Connecticut in which it was discovered.

By the end of the 1980's, 15 years after Steere documented the first 39 known cases in a cluster of children, the disease had become the most common vector-borne infection in the United States. Between 1982 and 1992, there were nearly 50,000 cases reported nationwide, but because there was still no perfect test, diagnosis remained a notorious problem, and the disease stayed shrouded in mystery. Blood tests, especially in the early stages of the infection, frequently came back negative, even though the spirochete was present. As a result, patient advocacy groups put the real number of infected closer to one million. The explosion made Steere one of the most powerful forces in medicine.

Yet in 1990, as he watched what he had unleashed, he began to have misgivings. Though he was one of the first to recognize that Lyme disease could have long-term effects -- including persistent attacks of arthritis as well as the triggering of other mysterious diseases like post-Lyme or chronic fatigue syndrome -- he now saw a disturbing and seemingly inexplicable trend: more and more patients were being told they had something called "chronic Lyme disease," an unyielding infection that ravaged the body. In response, a small but growing number of clinicians were prescribing long-term intravenous antibiotics, sometimes for up to two years, believing that the spirochete was hiding somewhere deep inside the brain or tissue where it resisted ordinary treatment.

Certain that something was amiss, Steere did what he always did -- he tested his hypothesis. His research soon showed what he had suspected: that, at least according to his tests, more than half of the patients who had been given a diagnosis of Lyme disease and had been referred to his clinic in the last four and a half years didn't have it at all. Instead, he believed they had something else, perhaps the pain syndrome fibromyalgia or chronic fatigue. (The latter two are poorly understood illnesses that may in some cases have been triggered by the original infection; they share similar symptoms but are impervious to antibiotics.) He began to speak out, warning that Lyme had become a kind of junk disease -- a loose diagnosis used by a growing number of practitioners, patients and advocacy groups as an alternative to other afflictions that still had no known causes or treatment.

In August 1993, the Senate Labor and Human Resources Committee asked Steere to discuss his results with other experts in the field. At stake was the direction of millions of federal dollars in research, the legal guidelines for patient treatment and, in the eyes of a growing number of patients, their very survival.

When Steere arrived, the gallery was already packed with spectators, many of them wearing green ribbons to indicate their solidarity with Lyme patients. Their attention seemed to be centered on a little-known practitioner from Long Island named Joseph Burrascano Jr. Unlike Steere, he had never done scientific research, but he informed the committee that he had seen over 1,000 Lyme patients and that his protocol had been translated into three languages.

As Steere looked on, the young doctor began a tirade against the medical establishment. He warned that many researchers were deliberately playing down the severity of chronic Lyme disease. He did not say Steere's name, but it was clear to everyone in the room whom he was talking about. "There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight," he said. "Unfortunately, many of them act unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own."

Continued

June 17, 2001

Stalking Dr. Steere Over Lyme Disease

 


 

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Lyme Disease Drops, Especially in Areas Near New York City (Jan. 10, 2001)

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(Page 3 of 4)

As if to dramatize his allegations, which Steere and other researchers vehemently denied, a young boy in a wheelchair appeared. He wore headphones over his ears to block out the other voices in the room, which his mother said were deafening due to neurological damage from a Lyme spirochete. As his mother tried to interpret his gestures, the boy leaned forward and whispered into the microphone. "We can't think," he said of chronic Lyme disease patients. "We can't sleep. We need you."

The room was aghast. Steere later told a reporter that in his 17 years of research he had never seen a Lyme case like the boy's. During the Senate discussion, he tried to explain why there was so much misdiagnosis in general, but the gallery began to shout: "He's wrong! He's wrong!"

It was the most telling sign that there was something happening outside the ordinary circles of medicine, that in frustration a parallel universe was being created -- a universe in which there were now hundreds of Polly Murrays, self-taught medical experts armed with their own doctors and research. Though Steere maintained the support of most of his medical and scientific colleagues ("In the scientific community there is no controversy," he liked to insist), Burrascano wielded a growing army of patients and their support groups.

In the past, such groups typically tried to help patients get better treatment, lobbying for more research funds and sometimes, as in the AIDS movement, leading demonstrations and protests against the establishment. But because the Lyme movement considered itself a victim of a corrupt scientific establishment rather than political bias, it seemed to go even further, trying to discredit the existing research and come up with its own. The most powerful of these organizations, the Lyme Disease Foundation, created its own scientific publication, the Journal of Spirochetal and Tick-Borne Diseases; organized its own scientific conferences; financed its own research; and trumpeted its own medical experts with their own treatments. "We're trying to find answers," says Karen Vanderhoof-Forschner, a suburban mother from Connecticut who started the organization after her child died of what she says was chronic Lyme. "And the biggest problem is self-appointed gatekeepers like Steere."

Even Polly Murray turned against Steere, saying he was doing to other patients what the medical community had once done to her. "I don't know why he's doing it," she told me. "I've tried to talk to him, but he won't discuss it."

Things had gotten so bad that by the time I tried to reach Steere in February, he had gone into seclusion, refusing to give interviews and, according to a friend, traveling to speaking engagements under an alias. When I called the public-relations firm that he had recently hired, the spokeswoman told me that he was afraid for his life. "He's been getting death threats," she said. "These people won't leave him alone." Initially, she set up a luncheon for the three of us to get together in New York, but on the day before the meeting, Steere backed out. "He's worried that any publicity will only make him more of a target," the publicist said. Finally, after several more entreaties, he agreed to meet in his office at the New England Medical Center.

Steere's lab and private office were in their own section of the hospital, tightly guarded by bolts and alarms. When I rang the bell at his lab, a woman looked at me through a glass pane and then buzzed me in. Since Steere's testimony in Congress, his hair had receded, leaving him nearly bald, and with his white coat and pale skin there was something slightly ghostly about him. "Can I take your coat?" he asked.

His voice -- almost a low whisper -- only added to the effect. Hovering nervously about the room, he told me that every time someone had done an article, the media had botched the facts and that he had simply given up trying to illuminate them. "Medicine is hard," he said. "It is not simple, but people want to make it that way." As he spoke about playing the violin, about the "intuitive link" between research and music, it was hard to imagine him as the source of so much dread. "We are now in the political phase of the disease, and I am not a very public person." Despite his obvious discomfort, he invited me to sit in on several consultations the next morning.

But then, in the midst of those rounds, he again grew wary and led me into a different office and shut the door. He said that he wanted to talk to me, to help me better understand the illness, but that he was afraid of the public reaction to his words: "Doctors can't say what they think anymore. If you quote me as saying these things, I'm as good as dead." (Later he agreed to put some of the comments on the record. )

He sat next to me and pulled out a letter, dated June 26, 1999. He said this was typical of many patients who now receive "diagnoses" of Lyme disease, and he began to read it aloud: "I am 29 years old. I live in northern New Jersey and have been suffering with Lyme disease for seven years." She had been treated for over a year with antibiotics and tranquilizers, but remained "unable to work, to socialize, and unable to perform most daily tasks. I still have the majority of symptoms." She listed them on the back page in neat shaky letters: dizzy spells (which "have been worsening in the last 6 months"), severe fatigue, muscle pain, low-grade fevers, intolerance to heat or cold, hot flashes, weight gain, weight loss, numbness and tingling in skull and limbs, seeing black spots, sinus infections, constant infections, palpitations, severe digestive disorder, high-pitch ringing in both ears, leg jerks, poor sleeping habits, food allergies, severely altered balance, mood swings, deteriorating handwriting and so on. In the middle of the list, Steere paused and looked up at me. "You've seen some of my patients," he said. "You've gotten some idea as a lay person what Lyme disease is. Does this sound like Lyme disease?" I agreed that it sounded awfully broad. "We have a lot of tests for Lyme disease," he continued. "Not just blood tests" -- which his critics say are far more unreliable than he admits -- but tests for neurological damage."

He read a part of the letter that said that the patient had undergone an M.R.I. for her dizziness but that the results came back negative. If a spirochete had damaged her brain, he said, the tests would show lesions. "Let me read you another part," he said, "so that you understand: 'What do I do to be well again? My life has been turned upside down by "Lyme." I . . . haven't been able to work in 5 years. I've been divorced and have claimed bankruptcy due to mounting medical bills. Currently I am also trying to take care of my mother who lives with me and is suffering from pancreatic cancer, on top of all this I feel terrible."' Steere put down the letter and stared at me for a long moment. "What I suspect is that she doesn't have Lyme disease but some kind of psychiatric illness," he said. He paused, as if already anticipating the impact of his words. "That does not mean I don't care about her or what happens to her." In fact, he said, he would be hurting her if he treated her for something she didn't have.

June 17, 2001

Stalking Dr. Steere Over Lyme Disease

 


 

Related Articles

 


Lyme Disease Is Hard to Catch and Easy to Halt, Study Finds (June 13, 2001)

Lyme Disease Rises as More Build in Woods (March 16, 2001)

Findings Boost Hope for Better Lyme Vaccine (Feb. 20, 2001)

Lyme Disease Drops, Especially in Areas Near New York City (Jan. 10, 2001)

Concerns Grow Over Reactions to Lyme Shots (Nov. 21, 2000)

Dirty Secrets of Bloodthirsty Ticks (July 11, 2000)

 

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Join a Discussion on Health in the News

 





 

 

 

(Page 4 of 4)

Though that was as far as he wanted to go, other doctors on his side lay out the essence of his case. Because of the stigma of mental illness as well as the lack of cures for other diseases like fibromyalgia or chronic fatigue, they say, there is a constellation of forces pushing for such a diagnosis. Many companies often will not help mentally ill employees or those with poorly understood disorders like fibromyalgia; worse, insurance companies still don't want to pay for long-term psychiatric care. As a result, they say, there is now a movement to treat other illnesses -- including chronic fatigue syndrome and fibromyalgia -- as Lyme disease and to attack doctors when they don't. Says one doctor in Steere's camp: "There is now a cult out there -- these advocacy groups -- that says to people: 'This is not depression. This is not your fault. You have a spirochete in the brain. You should sue your doctor. What's more, we'll be your expert witness."' Steere puts it more philosophically. "We've come to have the idea in America that it is possible to cure anything and that everyone could be well, and it's even their right to be well, and they should be angry if the medical profession doesn't make you well."

The consequence, he and his supporters say, was not just that doctors like him were being intimidated, but that patients, like the one in the letter, were being tempted by hazardous cures -- in particular, years of antibiotics, which studies have consistently shown can cause liver complications, severe infections and the emergence of bacterial strains resistant to antibiotics that leave people highly vulnerable to other diseases. "I'm not against them feeling better if it were a sugar pill, but what they're being given is a dangerous medicine," says Dr. Peter Welch, who treated some of the first Lyme patients in Westchester County. He cites a recent case in which a 28-year-old woman, whose illness had been misdiagnosed as Lyme, died of an infection that she contracted during years of intravenous antibiotic therapy. "I'd call that treatment involuntary manslaughter," Welch says. "You can't just put chronic intravenous lines in people without having serious complications."

In a final attempt to control standards of treatment and rein in the Lyme lobby, state medical boards have started to investigate doctors across the country for prescribing months and even years of antibiotics. In the most recent and explosive case, they have taken on the man who had predicted he would be targeted nearly a decade ago for speaking out in the Senate and who Steere once called "the principal force leading to the overdiagnosis and overtreatment of this illness": Joseph Burrascano.

When I caught up with Burrascano this spring, he was standing at a bus station in Manhattan in the pouring rain, waiting to return to the Hamptons. He had just come out of a closed hearing of the New York State Office of Professional Medical Conduct, which he said had been actively investigating him for months, and his eyes were puffy and voice hoarse. "I've been preparing for days with little sleep," he said. "I've totally used up any money I might have had. I can't go on vacation. I have kids facing college, and I don't know how I'm going to pay for it."

As we rode back on the bus together, he told me that what Steere and the medical boards were doing was a form of medical McCarthyism. They were trying to resolve a medical dispute that had raged for years by simply annihilating doctors on the other side. He said there was evidence within the scientific literature to show that in severe cases the spirochete could not just elude some tests but could also resist the traditional course of antibiotics. "Patients come to us after Steere and his colleagues deem them treated and cured, and we are able to demonstrate clearly, through biopsies and cultures and DNA probes, that they were still infected," he said.

As for the dangers of long-term antibiotics, he said, "You're not going to withhold treatment for a potential side effect, which may never occur, and ignore a known infection that desperately needs to be treated."

Although not enough research has been completed to irrefutably resolve the dispute, one of the first big studies by the National Institutes of Health to probe the effect of long-term antibiotic use for chronic Lyme patients was recently terminated by an independent board because there were no significant differences in the outcome between patients who received the antibiotics and those who received placebos. The study, which is being published this month in The New England Journal of Medicine, found no evidence that the patients still had spirochetal infection, which is likely why antibiotics did not work. One prominent Lyme physician I spoke with estimated that 80 percent of the medical community, if not more, agrees with Steere, particularly when it comes to antibiotics.

But to my surprise, Burrascano, in contrast to the doctors in medical lore who were devastated by feuds with the medical establishment, seemed unafraid. Rather than isolated, he was being swept up in the arms of a new force. "There's a whole political movement going on now," he said.

Indeed, only a few weeks later, scores of Burrascano's patients and supporters spilled into the corridors of the New York State Capitol to lobby politicians to stop the state's investigation. Denouncing Steere, they carried signs that read "Ticked Off" and "Leave Our Doctors Alone." Some sat in wheelchairs; others leaned on canes. When they learned that I was doing an article on Steere, they began to give me their testimony, one after the other, on how he had refused to treat them, how they were going broke because the insurance companies heeded his guidelines and wouldn't foot their bills, how most doctors, with the exception of Burrascano and other doctors on his side, had ridiculed them and dismissed them and called them nuts. One woman removed the corner of her blouse and showed the hole where, only hours earlier, she had an intravenous IV hooked up to give her the strength to get out of bed. "Please help us," one patient said. "We are dying."

Not long after, the latest and most extraordinary threat appeared in cyberspace: "[W]e still do URGENTLY need MORE of the following bonafide Letters of Complaint regarding Dr. Steere . . . in order to prompt an immediate . . . investigation." The crusade, which had been going on for months, was the most serious attempt yet to eliminate Steere, at least as a doctor. Rather than trying to merely create a new establishment with their own doctors and research as they had in the past, they were now trying to destroy the old order by turning its last defense, the one it was trying to use against Burrascano, against itself: the state medical boards.

One letter, which I obtained, said: "I regard Allen Steere . . . as the antichrist. . . . I owe what is left of my life to Dr. Joseph Burrascano."

So far, the board has closed seven complaints from former patients, concluding that "there was no basis for disciplinary action." But John Coughlan, director of the Massachusetts Lyme Disease Coalition, says that there are more coming in: "There will be a day of reckoning."

In response to the complaints, an associate of Steere's wrote a letter to the board, saying: "A few online individuals obsessed with Lyme disease are denouncing him, stalking him at meetings, issuing vague threats and posting libelous nonsense. A complaint campaign to the board is just the latest escalation in a guerrilla war against physicians, scientists and federal officials who are not inclined to view Lyme borreliosis as the Fifth Horseman." Since the campaign, Steere's friends say that he has grown more and more depressed, though he wouldn't say so publicly. "This is criminal what is being done," Welch says. "They are destroying the best clinician I know in medicine."

For our last interview, I was supposed to meet Steere at his house, where he was holding a small concert, but he changed his mind at the last moment, saying that he didn't want his family embroiled in the controversy. "The fear is, all it takes is one. . . . " he said, letting his thoughts trail off.

To accommodate me, he agreed to meet in his lab, where, as he put it, "there were no lobbies." We walked past several stations, lined with beakers and syringes and microscopes. Researchers, trying to find better ways to test and kill the spirochete, huddled over their benches in white coats and gloves. "This is the laboratory where we're growing T-cells," he explained, his face suddenly brightening. "This is the type of white blood cell that is orchestrating the immune response against the spirochete." A technician opened a huge container and a gush of frozen air spilled out. Inside the bin were blood samples from Lyme patients dating all the way back to the original cluster of children he studied in Lyme, Conn., in 1976. As Steere spoke about the possibility of using what he has learned from them to unravel the mystery behind other diseases that still have no known cause or cure, he smiled and peered over the edge. "This has been a long journey," he said. "It's had many milestones along the way, but in no way do I feel like it's over."

David Grann is a contributing editor at The New Republic.

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