JUNE 1, 2000, PROTEST PLANNED
Human Granulocytic Ehrlichiosis Emergent
NEWS ARTICLE from THE NEW YORK TIMES, 5-23-00, By HOLCOMB B. NOBLE
Dr. Joseph J. Burrascano, a doctor in East Hampton, N.Y., says some patients do suffer chronic Lyme disease; and he advocates long-term treatment. He has been ordered to answer formal complaints about his practice.
Mary Kineavy, a registered nurse from Boston, is among the patients who have had trouble getting treatment. She has filed a complaint against Dr. Allen C. Steere of Boston, who told her she never had Lyme disease.
''Questioning Long-Term Lyme Cases
J. Carol Goodman, a 71-year-old writer from Morristown, N.J., was hiking in the Swiss Alps four years ago when she became dizzy, lost her sense of balance and began, as she put it, walking like a drunk. She managed to get back to her friends home in St. Moritz and went to bed.
"I woke the next morning with the room spinning," she recalled. After she began vomiting, she was taken by ambulance to a nearby hospital. "By the time I got there, the doctors said my eyes were jiggling out of my head," she said. "I was on the fastest roller coaster in the world and could not stop it." The Swiss doctors stabilized nerve spasms in and around her eyes and she flew home to New Jersey the next day.
Mrs. Goodman says her collapse was the culmination of health problems she had steadily developed since 1992, when she was bitten by a tick in her backyard and Lyme disease was diagnosed. After the bite, she began to feel tired and achy and was treated with a 28-day course of antibiotics.
Still feeling ill, she was referred to a well-known specialist in Lyme disease, Dr. Allen C. Steere of Boston, who told her she did not need more antibiotics and would improve on her own, she said.
Instead, she said: "I began to be in constant leg and back pain. I had an irregular heartbeat, memory problems. My nerves would jolt as if I were getting electric shocks."
Mrs. Goodmans experience is at the center of a bitter medical debate over Lyme disease that has been simmering for years, but that has now erupted in anger and increasingly vocal and formal accusations.
On one side is Mrs. Goodman‚ former doctor, Dr. Steere, who first identified Lyme disease in the United States 25 years ago in a cluster of patients in Lyme, Conn. Dr. Steere, along with a majority of mainstream doctors, say most cases of Lyme disease can be successfully treated with 30 to 60 days of antibiotics, which they say kills the Lyme infection.
If symptoms continue, they are probably caused by something else, these doctors say like a form of post-Lyme syndrome or some poorly understood condition that may persist after the infection is killed; or they are caused by an unrelated problem, like chronic fatigue syndrome, psychiatric illness or diseases with similar symptoms, like lupus or multiple sclerosis. Moreover, they say, long regimens of expensive antibiotics are unnecessary, and can be even dangerous, after the infection has cleared.
On the other side are doctors like Dr. Joseph J. Burrascano, an internist and family doctor in East Hampton, N.Y., , a leader of those who say patients with symptoms like Mrs. Goodman suffer from long-term, or chronic, Lyme disease and need long-term antibiotic treatment. The bacteria that cause the disease, known as spirochete, they say, can bore so deeply into tissue that they evade initial treatments and remain infectious.
Over the past few months, both Dr. Steere and Dr. Burrascano have been ordered by their states medical boards to answer formal complaints about their practices.
Earlier this month, members of Congress from Connecticut, New Jersey and Pennsylvania asked for an inquiry into accusations that federal health officials were showing scientific bias and misallocating research money designated for Lyme research. They asked the General Accounting Office, an investigative arm of Congress, to look into accusations by patients, doctors and scientists who are challenging the mainstream position.
Senator Christopher J. Dodd, Democrat of Connecticut, said "that given the seriousness of the complaints, we believe it is incumbent upon us to request an unbiased investigation."
Meanwhile, patients who say they have had experiences similar to Mrs. Goodman‚ have become more incensed. They say they often cannot get treatment, leaving them bedridden and suffering a range of symptoms from brain damage and cognitive difficulties to memory loss, blindness or death.
Some patients, many on crutches or in wheelchairs, have been holding meetings and protest rallies in Pennsylvania. Others have complained at meetings and hearings in the New York, Texas and Connecticut legislatures, and patient-support groups have sprung up all over the country.
John F. Coughlan, coordinator of the Massachusetts Lyme Disease Coalition, a patient group on Cape Cod, says his group gets an average of 50 calls a day. Many of these people are desperately ill and in pain and they cannot get effective treatment or any treatment at all, he said.
In recent weeks, Dr. Steere has become the subject of seven formal complaints and four letters of complaint filed with the Massachusetts Board of Registration in Medicine by patients who accuse him of misdiagnosing or mistreating their conditions and causing their health to worsen. Copies of their complaints were obtained by the New York Times.
Nancy Achin Sullivan, executive director of the board, said that she could not comment on the pending case but that 11 such complaints would be considered a high number. Dr. Steere, in an interview, would not comment on individual cases, but said the complaints were "completely without merit and I am confident that they will be dismissed." He said he was a victim of organized harassment, adding that his treatment followed accepted guidelines.
Dr. Eugene D. Shapiro, a professor of pediatrics at the Yale University School of Medicine and a supporter of Dr. Steere's position, said many patients were not treated for Lyme disease because they did not have it. "The myth has become that whatever you have, it must be Lyme disease," he said.
Dr. Burrascano, meanwhile, was notified in December that he must face a hearing before the New York's medical licensing board, the State Office of Professional Medical Conduct.
Dr. Burrascano said he was first notified that he was under investigation seven years ago after he testified in Congress against limiting antibiotics for Lyme patients. Shortly afterward, state inspectors visited his office, he said, and took files of Lyme patients.
To his knowledge, Dr. Burrascano said, none of his patients have complained to the state authorities. He said he heard nothing until December, when he was told of the hearing But, he said, he has been not told what the charges are, who filed them and or when the hearing will be held.
Kristine Smith, a spokesman for the New York board, said she could not discuss pending cases.
But Dr. Burrascano said: "Whatever the medical board is saying, what most impresses me about all this is that the Lyme patients I see are so incredibly sick. And other doctors are not helping them. I just follow common sense. I listen to my patients and if there‚'s something I can‚'t understand, I try to figure it out. I don't just dismiss them."
Diane Greening, 31, of Sayville, N.Y., a former gymnastics teacher, said Lyme disease struck her when she was 22, forcing her to use a wheelchair at times and then immobilizing her. Several other doctors had failed to help, she said, when she saw Dr. Burrascano.
"He saved my life," said Ms. Greening, who is now able to walk again. "I feel safe now and for the first time hope I'm on the road to recovery. But what would happen to me if Dr. Burrascano couldn‚'t practice?"
Dr. Kenneth B. Liegner, a Lyme specialist and internist in Armonk, N.Y., said the action taken against Dr. Burrascano last December "simply amounts to a war on doctors who are just trying to find a way to help patients who are very sick." "It's one thing for doctors to want to push their views," he said, "what's going on here is an attempt to stand in the way and prevent others from practicing theirs."
At this point, many scientists contend that too little long-term research has been done to know who is right. Dr. Pierce Gardner, a dean at the State University of New York at Stony Brook School of Medicine, wrote in a recent editorial in The Journal of the American Medical Association, that there was still no valid way to assess and manage the disease over the long term, adding, "Uncertainty breeds strong disparate opinions."
One of the formal complaints against Dr. Steere, which came from Mrs. Goodman, said he had failed to give enough antibiotics and told her that she was going to recover. When she continued to get worse, she said in an interview, she could not get another appointment and was told by a research assistant in the doctor's office that she should try an antidepressant.
Back in New Jersey, she said, she was unable to find a doctor who would treat her. She said doctors often cited Dr. Steere‚'s treatment guidelines, said they could not help and suggested psychiatric help.
Dr. Steere declined to discuss individual patients, but said he gave patients the best and most appropriate care.
Finally, Mrs. Goodman said, she was carried in her husband's arms into the office of Dr. Bernard Davidoff of Morristown, who diagnosed her condition as persistent Lyme disease based on her symptoms. She then saw Dr. Liegner, who said he confirmed the diagnosis from blood tests and her symptoms.
Dr. Liegner, who also spoke in an interview, said he had treated more than 1,000 patients with experiences similar to Mrs. Goodman's. He said he had put her on long-term oral antibiotics. When he tried to stop the treatments, she relapsed. Both Mrs. Goodman and Dr. Liegner said she was still taking antibiotics, and was now in good health.
Other patients who filed complaints against Dr. Steere echoed her experience, saying he contended that either they no longer had Lyme disease if they had had the 30 days of antibiotics, or that they had never had it.
Mary Kineavy, a registered nurse from Boston, who also filed a formal complaint, said in an accompanying letter that she had had a positive blood test and debilitating symptoms when she was referred to Dr. Steere and had another positive test two weeks after he dismissed her. Ms. Kineavy said she was flabbergasted when Dr. Steere told her, "You've never had Lyme disease in your entire life."
In 1993, Dr. Steere fired one of the first shots in the Lyme wars in a study, "The Overdose of Lyme Disease," that was published in The Journal of the American Medical Association. He said that of 788 patients referred to his rheumatology clinic by other doctors who had diagnosed their conditions as Lyme disease, only a minority actually had the disease, according to his blood tests.
Among critics of the study, Dr. Craig P. Cleveland, a Cincinnati clinician, said in a letter to the editor of the journal that it was saying in effect, "Your tests are wrong and mine are right." Because diagnostic blood tests for Lyme are often inaccurate, the critics said, the [Steere] study was not conclusive ...
Dr. Brian A. Fallon, an associate professor of clinical psychiatry at the Columbia University College of Physicians and Surgeons, wrote of three long-term case studies of psychiatric disorders in a 1998 article in the journal Psychiatric Clinics of North America. It was titled "The Underdiagnosis of Neuropsychiatric Lyme Disease in Children and Adults."
One of the cases was that of a 7-year-old girl identified only as Susan. According to Dr. Fallon, she received a diagnosis of attention deficit disorder but she grew increasingly tired, forgetful and had difficulty speaking, suffered joint pain and sensitivity to light and sound. In the second grade she tested positive for Lyme disease. After she was put on antibiotics, she improved physically and began to get straight A's.
But when taken off the antibiotics, she would quickly regress, a situation that persisted until she was 9, when her condition stabilized. Then at 12, the pain, headaches and poor concentration and poor grades returned. After she was put back on antibiotics for several months, she improved again, and now at 15 she is off the medication and in good health, Dr. Fallon said.
The case study is regarded as too small to prove the value of long-term antibiotics, which Dr. Fallon readily concedes. But he said it was one of the few observations of chronic Lyme patients carried out over long periods of time. "Basically, I intended it to help clinicians avoid misdiagnoses," he said.''
For more information: All About Lyme Disease
To the Editor of THE NEW YORK TIMES: (e-mailed May 25, 2000), By Ann Hirschberg
Thank you for the May 23rd  article which finally gave a realistic picture of what doctors and patients face when they try to treat Lyme disease.
Mr. Noble's article shows the horror and frustration faced by both when dealing with a disease that has been trivialized and denigrated by academicians as well as officials of the CDC and the NIH, who have referred to "Lyme hysteria," "the myth of Lyme disease," "Pseudo-Lyme disease," "a conversation topic for cocktail parties," "a disease of rich suburbanites," and "no big deal." Try telling that to sick children of parents who have paid tens of thousands before finding a knowledgeable doctor who helps.
In Ohio, doctors laugh and patients are told "it is only in New England," or "there has never been a reported case in this state" when the disease has been reported from every state in the union. Ohio? 620 cases have met the strict CDC surveillance definition with nearly twice that many having been reported.
After 25 years, the medical profession should be better prepared to deal with a serious, debilitating, and sometimes fatal disease.
Ann Hirschberg, (Greater Cleveland Lyme Disease Support Group)
PATIENTS PROTEST HONORING OF ALLEN STEERE, M.D., AT AMERICAN LYME DISEASE FOUNDATION (ALDF) GALA
An organized protest of Lyme disease sufferers and Lyme community representatives has been scheduled as a Vigil outside The Hotel Pierre, 2 East 61st Street, New York City, on June 1, from 5:45 to 7:30 PM. The hotel is the site of an ALDF gala honoring Allen Steere, M.D.
Protest participants indicate that Allen Steere's school of thought, which states that Lyme disease is "overdiagnosed and overtreated," promotes narrow, ethically suspect viewpoints and medical guidelines which ignore a growing body of scientific evidence and patient tragedy.
Steere, who has been credited with "identifying" Lyme disease a quarter century ago, has aggressively insisted that most cases of Lyme disease can be successfully treated with only 30 days of antibiotics, and if symptoms persist, they are probably caused by "something else." His guidelines are popular with insurance companies and widespread dissemination of these guidelines has created an atmosphere in which Lyme disease patients have had difficulty getting diagnoses and adequate treatment, particularly in advanced or "late" stages.
Disagreeing physicians, researchers and patients have suffered serious adversity. Insurers routinely discontinue or limit insurance coverage for lyme disease, citing Steere's guidelines. Protesters assert that accelerating physician harassment has led to loss of licenses, censure, or restriction of medical practice due to fear of sanctions if Steere's guidelines are not followed. They assert that the pool of doctors willing to treat Lyme disease has shrunk to a critical level and many Lyme disease patients are unable to find or sustain adequate treatment.
Lyme disease patients continue to suffer a multitude of disabling symptoms such as brain damage, memory or cognitive difficulty, blindness, crippling arthritis and even death. Many have suffered debilitating chronic effects for years despite insistence that short term antibiotics cure Lyme disease. In a new turn of events several of these patients have filed complaints for investigation of Steere by the Massachusetts Board of Registration in Medicine.
The Lyme community will hold a solemn Vigil to express publicly their indignation at the honoring of this physician who it is felt has caused adversity and suffering to so many lives. Patients will gather outside The Hotel Pierre and "show and tell" how their lives have been affected by the academically stringent guidelines promulgated by Steere.
Lyme disease, a tick-borne infection, rivals AIDS as the fastest growing infectious disease in the US. With over 16,000 cases reported in 1998, the actual figure may easily be 10 times that according to the CDC. Although publicized chiefly on the East coast, Lyme disease occurs nationwide as well as worldwide and is endemic in states across the USA.
"Steere's Lyme disease guidelines remain predominant primarily due to political and historical directive and not from rational science, clinical experience and patient perspective. The honoring of this individual who holds academic status over patient welfare cannot be condoned." - Rita L. Stanley, Ph.D., patient advocate.
For futher information:
HUMAN GRANULOCYTIC EHRLICHIOSIS EMERGENT IN LYME, CONNECTICUT
WESTPORT, 5-18-00 (Reuters Health) - Data from an ongoing population-based study show that human granulocytic ehrlichiosis (HGE) is the most common tickborne infection after Lyme disease in southeastern Connecticut.
Dr. Robert W. Ryder from the Yale University School of Medicine, New Haven, and a multicenter group conducted both active and passive surveillance to determine the incidence of HGE in a 12-town area around Lyme, Connecticut, with a total population of 83,600. The study was conducted from April through November of 1997, 1998 and 1999.
In active surveillance, the investigators provided local primary care physicians and emergency care facilities with detailed information about HGE, and participants collected acute-phase blood samples from patients with suspected HGE. Passive surveillance involved testing blood samples submitted by other physicians from patients with suspected ehrlichiosis.
Of the 537 patients who saw their physicians with symptoms suggestive of HGE, 137 (26%) had "laboratory evidence of HGE." The investigators say in their report in the April issue of The Journal of Infectious Diseases, "The incidence of confirmed HGE was 31 cases/100,000 in 1997, 51 cases/100,000 in 1998 and 24 cases/100,000 in 1999."
In comparison, Dr. Ryder's team points out that the incidence of Lyme disease in the same area was 310 cases/100,000 in 1997 and 340 cases/100,000 in 1998, "and is currently 5 to 10 fold greater than our HGE incidence." Considering that many ticks carry both Lyme disease and HGE, the researchers feel that the apparent difference in incidence may be due to the lack of knowledge about HGE compared with the wide public and physician awareness of Lyme disease.
Dr. Ryder and colleagues note two additional unexpected findings. First, almost one-third of the HGE cases identified by the POLYMERASE CHAIN REACTION (PCR) test PCR had no detectable antibodies, possibly because of timely antibiotic treatment. And second, in seven patients ehrlichial DNA was found in convalescent blood specimens, suggesting possible persistent infection.
J Infect Dis 2000;181:1388-1393.