| JWissmille 2004-08-26, 10:08 pm |
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http://www.buffalonews.com/editoria...824/1044157.asp
FOCUS: LYME DISEASE
Spread of Lyme stirs medical rift
Doctors are divided over how to diagnose and treat the disease in chronic,
long-term cases
By DAN ZAK
News Staff Reporter
8/24/2004
As Lyme disease spreads to upstate New York, a medical controversy of sorts
has followed it across the Hudson.
The illness, transmitted by the bite of a deer tick, is characterized early
on by flu-like symptoms.
But some patients are complaining of disabling late-stage medical problems
even though they can't recall a telltale tick bite or rash, and there is
disagreement over whether they should be treated for what some claim is
still a very rare disease.
Robin Stachowiak of Lancaster has suffered one health problem after another,
and describes herself as 42 but feeling like 102.
Maryann Mezydlo of Alden, at 66, can barely walk and spends much of the day
in pain. "For the last four years, I've had no life," she said.
Both women have received negative results from the most common laboratory
tests for Lyme. Both have shuffled from specialist to specialist unable to
find a doctor who can diagnose what is wrong with them.
Both have been told their neurological and other medical problems may be
imaginary. Yet each is convinced she has the disease.
"After a while of going to these docs and them telling me that it's all in
my head, you start to believe it," Stachowiak said.
If caught early, Lyme disease is easily treated. But the women illustrate
divisions in the medical community over diagnosing and treating Lyme in
chronic, long-term cases.
On one side are the majority of physicians, supported by government health
agencies, who adhere to a definition of the disease based on the criteria
used to document new cases, such as flu-like symptoms and a rash that
resembles a bull's eye.
On the other side are some patients, Lyme disease organizations and a small
number of doctors who use a broader set of criteria to diagnose Lyme
disease. They advocate treating patients for probable Lyme disease with
long-term antibiotic therapy.
These doctors, and their patients, argue that Lyme disease is more
widespread than believed.
The government's definition of Lyme, based largely on observable symptoms,
is too focused on the early stage of the disease, according to some patient
advocates.
"(The criteria) effectively disenfranchised a whole population of Lyme
patients because most of the Lyme patients don't meet it," said Pat Smith,
president of the New Jersey-based Lyme Disease Association.
Others counter that Lyme, except for certain areas of the country, may be
spreading but remains rare. They also argue that loading patients with
antibiotics poses dangers itself.
"If you're going to tell me that there are patients around that have this
late-stage neurological presentation, then we ought to be seeing a whole
bunch of more typical presentation in this area. And I do not think we are,"
said Dr. Howard Faden, co-director of the infectious disease division at
Women and Children's Hospital.
Lyme disease, first observed in children in Lyme, Conn., in 1977, is caused
by bacteria transmitted to humans by the bite of infected deer ticks, an
insect about the size of the period at the end of this sentence.
In 2003, there were 21,273 cases of Lyme reported to the federal Centers for
Disease Control and Prevention, nearly all of them in 12 states, including
New York and Pennsylvania.
In New York in 2003, there were 5,399 reported cases of Lyme, mostly
downstate. Of those, 10 were from Western New York.
The number of reported cases nationwide has doubled in the last 10 years,
according to the CDC. "There's no doubt it will be here in Erie County if
it's not here yet," said John Eiss, who administers the vector and pest
control program for the county Health Department.
It's unclear how many cases go unreported or misdiagnosed in the Buffalo
area. There is anecdotal evidence that the number of cases could be higher.
"Maybe four years ago, we basically didn't hear from people in (Western New
York)," said Smith. "And now we get quite a few calls from there because no
one really knows where to go."
"Lyme is there. There is no doubt. It's underreported," said Dr. Joseph
Joseph, an internist in North Hermitage, Pa., who offers long-term
antibiotic treatment for probable cases of the disease.
Shortly after an infected tick bite, most patients develop a red rash, along
with fatigue, fever, headache, muscle aches, and joint pain.
If not treated promptly with antibiotics, the early signs of Lyme disappear,
and some patients later may develop arthritis and neurologic problems.
The symptoms can be easily misinterpreted as other illnesses. Blood tests
are done on patients who do not have the rash. But the tests are not
foolproof.
Mezydlo's Alden home is decorated with angels. She says she looks to the
angels to help her, because nothing else has.
She received negative results from the two most common Lyme diagnostic
tests. She later received a positive result from a newer test, but that test
was found to be unreliable. "We need better diagnostic tests," said Dr.
Timothy Murphy, an infectious disease expert at the university at Buffalo
and Veterans Affairs Medical Center. "We're limited by the methods we have
to make the diagnosis."
Smith contends that only 10 percent to 15 percent of people exhibit the
bull's eye rash, the typical presentation of early Lyme, leading to cases
that go undiagnosed.
Others disagree.
Faden cites reports in medical journals that never put the figure for rash
manifestations under 50 percent. He said he's only seen one person in the
past year who exhibited the bull's eye rash.
"There may be Lyme disease that's missed here, but it's very small," Murphy
said. Some doctors even say their colleagues may be overdiagnosing Lyme.
"People get sent to my office told they have Lyme disease because doctors
don't know how to interpret the test," said Dr. Matthew Antalek, a
Buffalo-area infectious disease doctor.
Antalek, who has seen only two Lyme cases in 10 years, said physicians are
making too many unfounded diagnoses, and public health officials are
overestimating the presence of the disease.
In addition to questions about the reliability of the diagnostic tests in
some cases, there is disagreement about treatment.
Some people advocate long-term treatment with antibiotics for the
neurological problems that Lyme may cause. Others say there is no scientific
evidence to show that long-term antibiotic treatment works.
Mezydlo, for instance, receives a different oral antibiotic treatment every
four weeks.
Stachowiak, frustrated by lack of progress in solving her medical problems,
made an appointment for later this year to see Dr. Joseph Burrascano, a Long
Island physician who has stirred controversy for his use of long-term
intravenous antibiotic therapy for Lyme.
Both women contend local doctors don't recognize and treat chronic Lyme
appropriately because they are not informed enough about the disease.
But with 300 different strains of Lyme and the possibility of co-infections,
Lyme is a tough organism to diagnose and treat.
e-mail: citydesk@buffnews.com
Early signs of Lyme disease
Correct diagnosis can be elusive
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