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Chester Mellen

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Journal News, The (Westchester County, NY) - October 13, 2005

Debate over chronic Lyme disease continues By JANE LERNER THE JOURNAL NEWS (Original publication: October 6, 2003)

Sandy Mellen has driven her father to countless doctors, taken him across the country for experimental treatments, fought with insurance companies and lobbied legislators.

But she's convinced that he's not getting the treatment he needs to recover from a what she thinks is a chronic case of Lyme disease.

In desperation, she has put a large sign on the lawn of her New City home that sums up her family's battle since her father got ill three years ago:

"Lyme patients are denied medical treatment. This must stop. We need your help. Lyme does destroy lives."

Sandy Mellen and her 75-year-old father, Chester, find themselves in the middle of a long-standing controversy about the best way to treat Lyme disease.

"I can't believe I'm in the position now where my father is dying of something we know how to treat, and I can't get the drugs or a doctor to treat him," Mellen said.

The controversy is moving into the legislative arena as people like the Mellens press for laws ensuring that they and their doctors are free to pursue the best treatment.

At the same time, other organizations praise the state and medical establishment for taking action against doctors who recommend what many consider risky and ineffective treatments.

Nearly 30 years after the common deer tick became a symbol of previously unknown diseases invading suburbia, there is still disagreement on so-called "chronic Lyme," and the fight over its treatment is intensifying.

The infection is caused by Borrelia burgdorferi, a spiral-shaped bacterium, called a spirochete, that is carried by deer ticks.

Some people, like Sandy Mellen and the Armonk doctor who is treating her father, are convinced that Lyme can cause long-term neurological problems that respond only to long-term treatment with intravenous antibiotics.

"There is no question in my mind that my father has Lyme disease," Mellen said. "There is nothing else it could be."

Others point to numerous studies that have shown that Lyme disease responds well to a short course of antibiotics.

"There is no evidence to support the long-term use of antibiotics, and there is a lot of concern about the safety of doing it," said Dr. Gary Wormser, chief of infectious diseases at New York Medical College and Westchester Medical Center, both in Valhalla.

Wormser and other researchers at New York Medical College released a study two years ago in the New England Journal of Medicine that concluded there was no difference between antibiotics and placebos in improving symptoms in people with long-term symptoms they attribute to Lyme disease.

Wormser published another study in May in the Annals of Internal Medicine that showed that patients in the early stages of Lyme disease can be treated effectively with a 10-day course of antibiotics.

Others discount the mounting research showing that most people with Lyme respond quickly to a short-term dose of medication. They maintain that many people need to be blitzed with antibiotics indefinitely to fight the effects of Lyme disease.

"Standard therapy fails to make everyone well," said Chris Malinowski, spokesman for the Hartford-based Lyme Disease Foundation. "There are people who fall through the cracks, and they are the ones who relapse and need additional treatment."

The organization helped lobby for bills in Connecticut and Rhode Island that require insurance companies to pay for intravenous antibiotics for at least four weeks.

New York lawmakers also are attempting to enact legislation addressing the treatment of Lyme disease.

State Assemblyman Joel Miller, R-Poughkeepsie, is pushing for a law that would prevent insurance companies and the Office of Professional Medical Conduct from targeting doctors who treat Lyme with long-term antibiotics.

The agency is an arm of the state Department of Health and is responsible for taking action against physicians who are deemed unfit or dangerous to the public.

Miller's proposal is still in committee, although a similar measure aimed at reforming the Office of Professional Medical Conduct has passed the Assembly.

Miller said he took the action after hearing complaints from constituents who said they could not find doctors to treat them with long-term antibiotics out of fear of running into trouble with the state Office of Professional Medical Conduct.

Supporters of people with chronic Lyme are convinced that the state is unfairly targeting doctors who support the long-term antibiotic treatment.

They point to the case of Long Island doctor Joseph Burrascano, who has written guidelines on the treatment of chronic Lyme. Last year, the state suspended Burrascano's license for six months with the suspension stayed if the doctor complied with probation for two years.

In reviewing his treatment of Lyme patients, the state found "the physician guilty of negligence on more than one occasion and ordering excessive tests and/or treatment not warranted by the condition of the patient."

"The state is conducting a witch hunt against doctors who treat Lyme patients the best way they know how," Miller said. "The OPMC has no right to get involved in the middle of a scientific controversy."

Kristine Smith, the spokeswoman for the state Department of Health, said the OPMC does not target doctors who treat Lyme.

"The department has taken no position on long-term antibiotic therapy for Lyme disease patients, which is a matter of dispute within the medical community," she said.

But the state is required to respond to complaints against doctors, she said.

"Any cases brought against doctors who treat Lyme disease patients with long-term antibiotic therapy were based on deficiencies in care - not the antibiotic treatment," Smith said.

Some organizations contend that the state should stop doctors from treating patients with long- term antibiotics.

"Unfortunately, we go around this mulberry bush all the time," said David Weld, executive director of the Somers-based American Lyme Disease Foundation. "There are some doctors who build their reputations on this long-term antibiotic treatment, even though there is no evidence that it helps and plenty of evidence that it's dangerous."

Those doctors do more harm than good, and the state should protect the public by monitoring them, Weld said.

But for people like Sandy Mellen, who are convinced that long-term antibiotic therapy is the only hope for reversing severe neurological problems that they attribute to the disease, the state's actions have made it harder for Lyme patients to get treatment.

Her father has been seen by many doctors and spent weeks in hospitals. She even took him to Florida for experimental treatment in a hyperbaric chamber, where he inhaled pure oxygen inside a pressurized chamber in hopes of reversing his symptoms.

Doctors have given her father numerous possible diagnoses, including Alzheimer's disease and Parkinson's disease, she said.

But his family is convinced that Lyme is the real culprit.

Chester Mellen has had numerous courses of antibiotics and improves with each one, she said. But his symptoms - disorientation, hallucinations, insomnia - reappear once the course of medication is finished, his daughter said.

Every morning for the past two weeks, Sandy Mellen has driven her father, a former builder, to Northern Westchester Hospital Center in Mount Kisco, where he receives an intravenous dose of antibiotics.

He has had similar treatments before and has improved as a result.

Mellen said she is worried that her father's doctor, an outspoken proponent of the long-term treatment approach, will no longer be willing to risk getting into trouble with the state.

"Who ever heard of a doctor being afraid to treat a patient?" she asked. "It's crazy."

But patients are finding it harder to get doctors to treat Lyme disease with long-term antibiotics, Malinowski said.

"After almost 30 years, things are getting worse for patients with Lyme," he said "We are still in the Dark Ages. No one knows how to help these patients."

Still other Lyme experts contend that many patients who say they have chronic Lyme symptoms are really suffering from other illnesses. "You can grab onto Lyme disease as a possibility and run with it for the rest of your life if you are trying to avoid the fact that maybe you have Alzheimer's or multiple sclerosis or something like that," Weld said.