Lyme disease sufferers urge doctor education

Cape Cod Times - Hyannis,MA,USA
BOSTON - In sometimes tearful testimony, dozens of Lyme disease sufferers
and others urged lawmakers at the Statehouse yesterday to legislate ways for
more doctors to correctly diagnose and treat the often devastating disease.

Some of the more than 250 people at the hearing hobbled into Gardner
Auditorium with canes, dragged intravenous antibiotic drip poles, or leaned
on the arm of a supportive friend.

Many told of having to travel to doctors in New York and Connecticut for
correct diagnosis and treatment, only to find that their insurance would not
cover it because they had traveled out of state. They told of years of
suffering from muscle pains, insomnia, fatigue, short-term memory loss and a
host of other problems.

One woman said her son's confusion and inability to concentrate in school
cleared up after he was treated for Lyme disease by New Haven pediatrician
Dr. Charles Jones. She said her son's doctor in Massachusetts had refused to
prescribe antibiotics for her son, but did not hesitate to offer him a drug
for hyperactivity and attention deficit.

Members of the state's Joint Committee on Public Health, including Rep.
Shirley Gomes, R-Harwich, and Rep. Cleon Turner, D-Dennis, also heard
repeated requests to find ways to create an environment within the state
that is safe for doctors to prescribe antibiotic therapy - sometimes for
years - for infections that have not been diagnosed in the early stage and
have become chronic.

A battle is raging in the medical community over whether Lyme disease is
overdiagnosed and overtreated. On one side are major medical organizations
such as the Infectious Diseases Society of America and the federal Centers
for Disease Control and Prevention that question whether Lyme disease can be
diagnosed without clear test results, and whether it can become a chronic
condition if not caught early.

On the other side are the growing numbers of Lyme disease sufferers and a
small number of doctors and researchers who claim the condition must be
diagnosed based more on clinical symptoms than on what they claim are
imperfect tests.

Three physicians - all from out of state - testified before the committee on
the legitimacy of late-stage Lyme disease and the valid treatment with
long-term antibiotics.

''The evidence is incontrovertible: When (people with Lyme disease) are
treated early, they do well, if not, they don't do so well,'' said Dr. Brian
Fallon, a Columbia University researcher and director of the Lyme Disease
Research Program at the New York State Psychiatric Institute.

But the Infectious Diseases Society of America, in particular, has
questioned whether late-stage Lyme disease is an actual medical condition.
It has taken a strong stand against states making laws to force insurance
companies to pay for long-term antibiotics. In a June 28 letter to Gov.
Edward Rendell of Pennsylvania, where lawmakers are considering a bill to do
just that, society president Dr. Walter Stamm urged opposition.

''Legislation should not be the approach to address controversies in the
clinical diagnosis and treatment of medical conditions,'' he wrote.

But Public Health Committee Chairman Peter Koutoujian of Wal-tham said
yesterday many legislators say they can no longer ignore the tales of
constituents who have had to travel out of state where doctors have
practices that almost exclusively diagnose and treat Lyme disease.

Koutoujian said the committee will consider filing legislation.

Gomes yesterday said it was ''absolutely ridiculous for a state that has the
medical institutions we do'' to have so few doctors who are literate in Lyme
diagnosis and treatment.

''Eleven years ago, people were telling me they had to go out of state to
get treated, and I'm still hearing that,'' she said.

A group of about 20 Cape residents missed the deadline to sign up to speak
to the committee, after a bus they had chartered failed to show up and they
had to drive to Boston in their cars. But Constance Bean of Harwich did get
to tell the committee her story. She said she was bedridden for five years
with terrible joint pain from an undiagnosed Lyme condition and recovered
only after going to one of the only doctors in the state who will treat
late-stage Lyme disease, Dr. Samuel Donta of Falmouth and Boston.

Bean, who said she has a master's degree in public health and has written
six books on health, said she would like the Legislature to mandate
physician education in Lyme disease in medical schools and in continuing
education requirements.

Michelle Bosch of Falmouth also made the trip to Boston to advocate for
better doctor education.

''The doctors need to be the first line of defense on this, but they're
not,'' said Bosch, who said she suffered from Lyme for 11 years before being
diagnosed, and it was harder to endure than a bout with cancer.