NEWS ARTICLE from THE NEW YORK TIMES, 7-7-01, By JANE GROSS
``In Debate About Lyme Treatments, Some Patients Feel Lost
HYDE PARK, N.Y. -- Sandy Samelson could barely lift her head from her husband's shoulder when it was her turn to speak at a Lyme disease support group here in Dutchess County, where per capita incidence of the tick- borne infection is among the highest in the world.
"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 ... [6-12-01] 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 ...
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 [New York] 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 ... see a conspiracy at work ...
[A researcher], who insisted on anonymity ... [said] "They'd rather have Lyme disease than multiple sclerosis, which has no cure," ... "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 ...
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.
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 ... 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." ...
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." ''
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