STAR DEMOCRAT

Lyme disease patients, families share experiences
Many Eastern Shore residents testify at hearing

By CHRISTINE NEFF, Staff Writer
March 13, 2005

ANNAPOLIS -- They spotted each other in the crowd by the lime green awareness
ribbons safety-pinned to their shirts. They all asked the same questions: When were you
diagnosed? How long have you been sick? What's your treatment?

Here, in the hearing room for the Senate's Education, Health and Environmental Affairs
committee, these Lyme disease patients, their families and friends found common
ground.

They shared their stories with each other and took turns testifying before the committee Thursday for a bill they think will help their collective situation.
Parents spoke for their children. A young girl from Trappe spoke for her younger sister.

Two brothers walked arm-in-arm to the stand, where one gave testimony for the other, a
Lyme patient unable to talk.

Testimony -- at times very personal and emotional -- lasted three hours for Senate Bill 596, introduced by Senator Richard Colburn.

If passed, the bill will allow physicians to diagnose patients through clinical means and
prevent professional misconduct charges against physicians for prescribing long-term
antibiotics. The bill also will require insurance companies to provide coverage for those treatments.

Some Eastern Shore residents said this bill will save them monthly, eight-hour round
trips to Pennsylvania to see a ``Lyme literate'' physician willing to treat them.

For others, it will help defray the high costs of medical care.

The Eastern Shore, a region with one of the highest incidences of Lyme disease in the
state, was well represented at the hearing. More than 30 people came on a bus trip
organized by the Lyme Disease Association Eastern Shore of Maryland.

Many gave testimony on their experiences with the disease.

Pamela Andrews, vice president of the local Lyme Disease Association, testified in honor
of her 32-year-old daughter who went undiagnosed for nine years. She is now disabled from the disease, said Andrews, who also suffers from it.

Untreated, the disease moves through three phases of symptoms. Late stage symptoms
include arthritis in joints, numbness in limbs and neurological disorders such as
dizziness, short-term memory loss and an inability to concentrate.

The disease can be treated by antibiotics, but testing for diagnosis has been unreliable.

The two-tiered test for the disease has a low accuracy rate. Most of those who testified Thursday said they have never tested positive for Lyme disease by this system.

Two teenage girls from the Eastern Shore talked about what it's like to have Lyme
disease as high-schoolers.

``If I had been treated earlier, I would be graduating this year,'' said 17-year-old Samantha Davis.

Davis said she first developed flu-like symptoms at age 13 and saw more than 30
physicians before being diagnosed and treated for Lyme disease by a doctor in
Pennsylvania.

She was an honor roll student and a cheerleader when she contracted the disease. At its worst, she walked only with the help of her parents and weighed just 100 pounds.

Some physicians told her it was a psychological problem, that her symptoms were simply made up. ``I don't want anyone else to be treated like I was,'' said Davis.

Terra Hall, 17, of Salisbury, said she has missed 25 days of school and stopped
participating in all of her extracurricular activities because of Lyme disease. It's going to be hard to get into college now, she said.

Steve Lantz of Trappe gave testimony on his young daughter who has been diagnosed
with Lyme.

He said, even with a positive Lyme test, it's hard for patients to get treatment. They have to be their own advocate with physicians, said Lantz. Parents and patients should not have to fight against barriers to treatment.

One such barrier, according to Dr. Daniel Cameron of New York, is the existence of two
standards of care: Some physicians refuse to treat Lyme disease with long-term
antibiotics while others think it's the only way.

Normally, said Cameron, medicine would work this disagreement out on its own. But
physicians using the long-term treatment have been undermined by insurance companies
and threatened to have their medical licenses revoked, he said.

``Physicians could use a little protection,'' said Cameron, and, with that, the freedom to
treat Lyme patients through long-term antibiotics.

But some disagree with this stance.
For Irving Pinder, executive director of the Maryland Board of Physicians, medical
standards should not be set by law but from within the medical community.

``I have all the compassion in the world for what's been said here today,'' said Pinder,
who lives on the Eastern Shore and has a son with Lyme disease.

But the problem should not be addressed in this way. It sets a ``dangerous precedent to
put a standard of care in a statute,'' said Pinder. He offered educating physicians about
the disease as a way to deal with the problem.

Several committee members seemed to agree with his position, including Chairman
Paula Hollinger (D-11th).

Hollinger said she could not think of another case where the state legislated how to treat a disease. This seems to be a case of physicians not knowing how to diagnose or how to treat Lyme disease, she said.

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