Lyme disease tough to diagnose

georgia · medicine forum Guru Joined: 06 May 2005 Posts: 505

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Lyme disease tough to diagnose
By Laura D'Alessandro
Staff Writer

OCEAN CITY -- Attorney Jay Phillips spent four and a half months
with
constant flu conditions, a migraine headache and a fever of 103 degrees
before he fi-nally realized he might have Lyme disease.

"I estimate I had it for about 10 years before it broke out," he
said.

Phillips' initial diagnosis didn't even come from a doctor. He
discovered it
himself.

"Here I am sick as a dog and tired all the time, aching all over, stiff
neck
.... the whole nine yards," he said. "I had come in contact with the
Pennsylvania Lyme Disease Association and had a pamphlet with a test in
the
back."

Phillips, of Ocean City, went down the list of symptoms in the
pamphlet. He
said he scored about 75 percent positive, but when he approached his
doctor
he wasn't given any help.

"I subsequently have learned that a lot of doctors have an aversion to
being
known as a Lyme doctor. It's just politically unpopular," he said.

Unable to find treatment, he sought the help of the International Lyme
and
Asso-ciated Diseases Society and was directed to specialist Dr. Gregory
Bach
who, like any Lyme disease specialist, is located three to four hours
away.

During one of his many visits to Bach's Pennsylvania office for hefty
antibiotic treatments, Phillips met people in the waiting room with
astonishing cases.

A girl in her mid-20s had been misdiagnosed with multiple sclerosis and
was
prescribed steroids.

"She had been treated at the University of Pennsylvania and John
Hopkins;
she's suing them for malpractice," Phil-lips said.

The steroids made her Lyme disease worse, Phillips said. He described
her as
just now able to stand on her own, and with impaired speech.

Phillips also ran into a familiar face in Bach's office. Billy Boesche,
a
fellow Ocean City resident who had relocated to Columbia, Md., had been
infected with Lyme disease three times. His first two infections came
from
tick bites on Assateague Island.

"A neurologist at John Hopkins told him there was no such thing as
chronic
Lyme disease," Phillips said. Boesche died June 10 in his home. His
obituary
said he suffered from chronic Lyme disease and subsequently developed
amyotrophic lateral sclerosis.

Boesche, Phillips and the young girl he met in the waiting room are
just a
few among the many people who have had trouble finding proper treatment
for
Lyme disease.

In 2005, 1,235 cases were reported in Maryland and 891 cases were
reported
the year before, according to Robert Beyer of the Maryland Vector-born
Disease Interagency Work Group.

Despite word of its prevalence on the Eastern Shore, the Worcester
County
Health Department has only confirmed eight cases in 2005 and seven in
2004.
However, Debra Stevens of the department said this data may not include
cases that do not fit the Centers for Disease Control and Preven-tion's
criteria.

"For a confirmed case to get reported to the CDC and meet the criteria,
the
bull's-eye rash has to be at least 5 centimeters," Stevens said. "Or
they
must have the lab test and symptoms."

But not every infected tick bite leaves the signature rash. Phillips
said
the standard blood test, the ELISA test, used by doctors is only about
65
percent accurate. Phillips said the western blot test and more advanced
DNA
testing is accurate but is not accepted by mainstream doctors who are
also
unwilling to treat or recognize chronic Lyme disease.

"Insurance won't pay for that. They don't like you to have it unless
the
Lyme shows up on the standard blood test," he said. "But it moves in
and
sets up home in the cells."

Now, Phillips takes a high dosage of medication and must cleanse his
kidneys
and liver every day so the antibiotics don't damage them.

"I have to go to Pennsylvania every month and every month they draw
blood to
see the status of my various bodily functions," he said.

If he had only been diagnosed sooner, the treatment would not be so
severe,
he said.

"When it becomes imbedded in the cellular structure it takes long-term
and
high-antibiotic therapy," he said.

The Lyme Disease Associa-tion of the Lower Shore and other
organizations,
such as ILADS, are working to make Lyme disease treatment widely
accepted
and available.

.. ldalessand@dmg.gannett.com

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