http://www.nytimes.com/2001/07/07/health/07LYME.html
July 7, 2001
In Lyme
Disease Debate, Some Patients Feel Lost
By JANE GROSS
|
|
|
|||||||
|
|
|||||||
|
|
|
|||||||
|
|
|
|
|
|
|
|||
|
|
||||||||
|
|
|
|||||||
|
|
|
|
|
|
||||
|
|
||||||||
|
|
|
|||||||
|
|
|
|||||||
"I used to be. . . . " Ms. Samelson began, dazed and stammering.
Her husband, Ron Sigal, gave her time to regroup. When no words came, he took
over. "My wife," Mr. Sigal said, "used to be a tenured professor
of mathematics at SUNY New Paltz. Now she can't leave the house because she
won't be able to find her way back."
Ms. Samelson believes she has chronic Lyme disease. She also believes that
long- term intravenous antibiotic treatment, offered by a shrinking cadre of
doctors, is her only hope for recovery.
A study in the July 12 issue of The New England Journal of Medicine,
however, says that most patients with symptoms like Ms. Samelson's are not
suffering from chronic lyme disease. And the antibiotics they are taking, the
study says, are no more helpful than a placebo and carry substantial health
risks of their own, to say nothing of astronomical cost.
Dr. Allen C. Steere, who first identified the disease 26 years ago, has also
disavowed the idea of chronic infection and extended treatment. And, here in
New York State, which has the highest number of Lyme cases in the nation, the
physicians using the controversial protocol are in danger of losing their right
to practice medicine.
The result has left patients, like those who gathered here in late June for
their monthly support group, angry, confused and caught in the middle of a
scientific argument with increasingly high stakes for both doctors and
patients.
"We are in real turmoil," said Claire Nuttall, the group leader,
who says she is all but cured as a result of several courses of antibiotics.
"If someone had told our doctors to stop, some of us wouldn't be
here."
For sure, support group members are not disinterested parties. But they know
they are sick and they know they are scared. What frightens them most is the possibility
of losing their doctors to suspension by the State Office of Professional
Medical Conduct, a refusal by other doctors to treat them and the denial of
their insurance claims by a widening circle of companies.
Everyone's story is similar: migrating and intermittent symptoms,
unsympathetic or uncomprehending doctors, late diagnosis and frequent relapse,
complaints so protean that they mimic everything from lupus or multiple
sclerosis to chronic fatigue syndrome or Alzheimer's disease.
"A lot of us, we've tried to figure out in our own minds if we're
nuts," Ms. Nuttall said. "Why does this hurt today and that hurt
tomorrow and this other thing the next day?"
In Ms. Nuttall's case, a pain in her jaw took her to a dentist, an ear
doctor and then a parade of other specialists. Sometimes these doctors refuse
to test for Lyme. Sometimes the unreliable test comes back negative. Usually,
the perplexed neurologist or rheumatologist suggests a psychiatrist.
Eventually, for most in the group, a friend recommends what they call a
"Lyme-literate doctor," who prescribes a long course of antibiotics.
But relapse, they say, is common. "Every time you go off of it, you pray
you're better," Ms. Nuttall said.
The disease, which was first identified in a cluster of children in Lyme,
Conn., thus giving it its name, has become a summer scourge across the
Northeast, where tick-infested deer hang out in suburban gardens as if they
were house pets and parents check children from head to toe when they come indoors.
The research reported in The New England Journal of Medicine, editors said,
was terminated and published ahead of schedule to quell that exaggerated fear.
But those who suffer the array of symptoms associated with Lyme, and who have
become a formidable political lobby, see a conspiracy at work.
The scientists involved in the recent research do not doubt that these
patients are suffering. "I'm not trying to say they don't have major
problems," said Dr. Eugene Shapiro of the Yale University School of Medicine,
who along with the other researchers cited dangerous side effects from
long-term antibiotics, including destruction of bone marrow, liver damage and
the growth of resistant bacteria. "But Lyme disease is not likely to be
the cause, and long- term antibiotics are clearly not curative."
Another of the researchers, who insisted on anonymity to avoid a barrage of
criticism from patients and their advocates, said that people seized on a
diagnosis of Lyme because the alternatives were too upsetting.
"They'd rather have Lyme disease than multiple sclerosis, which has no
cure, " he said. "They'd rather have Lyme disease than depression,
which carries a stigma. They'd rather have Lyme disease than something that
nobody can figure out."
But for patients, those views represent not just a difference of opinion,
but a threat to their health.
"All of this scares the breath out of me," said Marlene Weisse,
who reports drastically worsening neurological symptoms since she quit her job
in a dynamite factory more than two years ago after "making mistakes left
and right."
"My doctor is under investigation," Ms. Weisse said, with growing
agitation. "I'm ruining my husband's life. The only one I have to talk to
is my dog. And the more I lay there, the more I think, `What the heck.' "
For most people, including a few in the group, the disease is diagnosed and
they are cured quickly. But more common in the support group setting is the
patient who saw no tick, had no telltale bull's-eye rash, tested negative when
symptoms appeared and went untreated for years. That was the situation with Ms.
Samelson, a hiker and climber until her illness. Her first doctor sent her home
with a handful of Prozac, a common situation among three dozen people
interviewed throughout the region.
Much later, Ms. Samelson found a doctor who prescribed long-term,
intravenous antibiotics, which can cost $3,000 a week and more. She takes them
when her insurance will pay. Her husband, a teacher at Hofstra University until
she required full-time care, has designed a computer program to prove she has
relapsed without them.
July 7, 2001
|
|
|||||
|
|
|||||
|
|
|
|||||
|
|
|
|
|
|
|
|
|
|
||||||
|
|
|
|||||
|
|
|
|
|
|
||
|
|
||||||
|
|
|
|||||
|
|
|
|||||
Ms. Samelson took comfort in the triumph of Lia McCabe, who was a
25-year-old up-and-coming financial planner when the mental fog reported by
many Lyme patients descended. "I had degrees in finance and computer
science and I couldn't add three plus four," Ms. McCabe said. "I'd
leave work and I didn't know how to get home."
Ms. McCabe's insurer denied coverage for intravenous antibiotics and "I
was stupid and didn't want to pay." Within two years, she said, she lost
the use of her legs and was on the verge of being placed in a nursing home.
Instead, she lived with her parents, who paid hundreds of thousands of dollars
for treatment.
Ms. McCabe said she spent two years in bed and six in a wheelchair. She can
walk now, and think clearly some of the time. She lives on her own again and is
considering a part- time job. When she feels her symptoms returning, Ms. McCabe
resumes antibiotics temporarily.
The duration and cost of treatment for some patients is part of what drew
the attention of academic researchers and insurance companies. Take Keith
Giraud, 16, of Harrison, N.Y., who was home-schooled for four years while
receiving a $5,500-a- week regime of intravenous antibiotics, which required
weekly visits by a nurse, said his mother, Cindy. The insurance her husband
received as a union electrical worker covered the treatment, which cost more
than $1 million, Mrs. Giraud said.
Keith has returned to school, and to varsity hockey, but has cognitive
difficulties that mimic certain learning disabilities, as well as occasional
seizures and arthritis in his legs.
But doctors willing to treat in this manner are getting harder to find.
There are 11 of them in New York State, said Jill Auerbach, an advocate for
Lyme patients here in Dutchess County. Three of those have told their patients
they are under investigation: Richard Horowitz of Poughkeepsie, Joseph
Burrascano of East Hampton and Kenneth Liegner of Armonk.
Assemblyman Joel M. Miller of Poughkeepsie, who has taken up the cause of
Lyme patients in his district, said several more were being scrutinized by the
state board. By law, the identity of the complainant is kept secret, and of
6,000 complaints a year, only 400 lead to investigations. "It seems like
every other one of those is a Lyme doctor," Mr. Miller said. "And the
complaints, we are convinced, come from the insurance industry."
"These are not doctors who carved their initials on a patient's abdomen
or operated on the wrong side of the brain," the assemblyman continued.
"These are not fly-by-night people who got their medical degrees based on
information on the back of a matchbook. This is a witch hunt."
The State Department of Health, in accordance with confidentiality laws,
would neither confirm nor deny that certain Lyme doctors were under
investigation. But Kristine A. Smith, a department spokeswoman, said that the
Office of Professional Medical Conduct "does not target disease
categories." Ms. Smith added that complaints come not only from insurance
companies, but also from "the public, other physicians, health care
facilities, government agencies and law enforcement."
At the support group, patients described feeling dismissed or ridiculed by medical
professionals and even by loved ones, a situation they assume will worsen.
"This new information will make the public think this is no more than an
exaggerated mosquito bite," said Betty Gross, who runs a Westchester
County support group.
Patients seem dumbstruck that anyone would doubt their motivation in
choosing the grueling treatment. "Thousands and thousands of us stay with
these doctors because they are making us well," said Sandra K. Berenbaum,
a Lyme patient and a therapist in Hopewell Junction, N.Y. "If they
weren't, why would we put ourselves through the physical and financial
costs?"
Ms. Auerbach, who left work as a computer programmer in 1992 when her
symptoms were intense, is once again a workaholic, this time with a cause.
"All of those wasted years," she said, "and then you find a
doctor who will treat you and you're a functioning, productive person again.
Some of us get our lives back. But they are taking away our treatment while the
science is still unsettled."
ALL
INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR
GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE
KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED
AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO
VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU
ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.