.
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. Goodman's 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's 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's 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's 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, he 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 he 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, "but 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 study was not conclusive.
Dr. Steere agreed that tests in
some other laboratories were inaccurate but said his were not. And on the subject of prolonged antibiotic therapy,
he said, "I have been discouraged by what I have seen." He said he had had better success with medications
aimed specifically at individual symptoms that persisted, like pain, depression or chronic fatigue.
Taking the other side of the debate,
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.
Rick Friedman for
The New York Times (top); Maxine Hicks for The New York Times (bottom)
