Lyme disease prompts medical arguments

On a lot of online Lyme disease discussion boards, Gail Sheffer said, members follow a strict protocol when it comes to recommending doctors.

They will use the doctor's initials and identify the town that he or she is from. They'll use the doctor's name in e-mails to individuals. But they will not post the doctor's name online, where a casual Internet browser can find it.

The reason, Sheffer said, is that the Lyme disease community is afraid those doctors will face harassment from insurers or even from their peers.

Many people in Sheffer's group claim they suffer from a chronic condition brought on by the disease, which they and some doctors say requires long-term treatment.

Yet many medical professionals caution about treatment that can do more harm than good, for the sake of treating a medical condition whose very existence they consider debatable.

The disagreement comes down to two basic schools of thought regarding Lyme disease, according to Dr. John Manzella, an infectious disease expert at Wellspan.

"There's no question they know what causes it, what transmits it and how to treat it," Manzella said. "The debate is from the treatment that says you need to treat for weeks and weeks and months and months for chronic, non-specific symptoms."

Sheffer, of Windsor Township, is president of the York Lyme Disease Support Group, which meets once a month. She said the number of group members has increased in recent years, and now numbers about 120.

On the surface, their mission is as uncomplicated as their name. They're a bunch of people with Lyme disease helping each other out.

A cluster of cases around the town of Lyme, Conn., led to identification of the condition known as Lyme disease in 1975. It's caused by a bacterium called Borrelia burgdorferi, spread by the black-legged deer tick.

Members of Sheffer's group look out for each other in a number of ways. They help line people up with human care agencies, pass the hat for members in

Gail Sheffer heads a Lyme disease support group that tries to help with results of the disease, which go beyond medical issues. It s really a strain on families and marriages, Sheffer said. (Daily Record/Sunday News -- Paul Kuehnel)

"It's really a strain on families and marriages," Sheffer said.

Members are protective of doctors who provide a certain type of treatment. The main differences between those "Lyme doctors" and many mainstream health care providers is twofold, Sheffer said.

First of all, they're willing to treat for Lyme disease based on a description of symptoms, rather than a positive test.

Sheffer said that distinction is crucial, because of the difficulty many Lyme disease patients have faced in getting a diagnosis in the first place. The bacteria causing the condition can nest in tissues or cartilage, eluding a blood test but showing up again to incapacitate their hosts, Sheffer said.

Patients frequently complain that they go years before getting a positive diagnosis, she said.

The other main difference is that the Lyme doctors are willing to prescribe the intensive, long-term treatment with antibiotics that they believe is necessary to get the condition under control.

Sheffer said she first began getting symptoms in 2003. Both of her daughters and her husband have also been diagnosed.

She said she has a chronic condition common in those who don't get diagnosed and treated soon after contracting the infection. Basically, her symptoms have recurred on and off for years. The most debilitating, she said, are the bouts of fatigue.

"It's like it sucks the life force right out of you," she said. "You can't peel yourself off the couch."

State Rep. Merle Phillips, R-Sunbury, has repeatedly sponsored a bill that would require insurance companies to fund treatment for chronic cases such as Sheffer claims to have.

Each session, it fails to pass out of the Senate Banking and Insurance Committee. Phillips blames lobbying by the insurance industry.

"I've talked to hundreds and hundreds of people all over who have had Lyme and were treated and recovered," Phillips said. "It's a real thing."

But critics say there's no clinical evidence to support the existence of a chronic condition.

Manzella said that an appropriate treatment for Lyme disease would be 14 to 21 days of an oral antibiotic. He said that "chronic Lyme disease" is "probably a misnomer."

There's no evidence that administering antibiotics beyond that would help anything, he said, and it may well cause harm.

The intravenous lines that some of the doctors use to administer prolonged antibiotics can cause clotting of veins. Such a course of treatment could produce bacteria in the colon that bring on severe diarrhea.

Another major risk of bombarding a patient's system with antibiotics is creating a resistant strain of "superbug," Manzella said.

"There are some minefields out there that need to be addressed when you decide to treat people for long periods of time," he said. "It's very interesting that the politicians have stepped into the fray."

tjoyce@ydr.com; 771-2089

If you're going to be in an area where contact with ticks is likely:

--- Perform frequent, thorough tick checks

--- Wear light-colored clothes

--- Tuck your pants into your socks

--- Afterward, put your clothes in a dryer for 30 minutes to kill ticks

--- Use insect repellants containing the ingredient DEET

Source: Lyme Disease Association

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