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Lyme Disease hard to diagnose:
April 19, 2003
By BRENT CURTIS Staff writer Rutland Herald
It took Estelle Leach three years to find a doctor who could pin down what
ailed her.
She was misdiagnosed with everything from allergies and asthma to
fibromyalgia and depression.
Her symptoms were pain in her joint pains, vertigo, memory loss and fatigue.
She was referred to several specialists who prescribed medications that didn
't work.
Fed up with the lack of results, the 44-year-old Pawlet resident went to a
new doctor last week and received a different diagnosis - Lyme disease.
"My doctor threw her hands up and said 'How did they miss it? All the signs
are there,'" Leach said. "I'm angry about it. I'm an educated person, but
when I brought the possibility of Lyme disease up to my other doctors
before, they didn't take me seriously. I've got better things to do than
hang out in doctor's offices."
Since her diagnosis, Leach has found other Vermonters afflicted with Lyme
disease who have told her similar tales of frustration.
From their stories, she's learned that she was luckier than some who
suffered for more than a decade before the disease was diagnosed.
Lyme disease, a bacteria transmitted through the bite of deer ticks, isn't
new to Vermont and is considered epidemic in Connecticut and some areas of
New York. The Vermont Department of Health reported 37 cases of Lyme disease
in the state last year, and officials said they routinely remind health
providers to be on the lookout during tick seasons.
But those afflicted with the disease in Vermont said many doctors don't pick
up on the disease's varied symptoms, or don't believe that Lyme disease has
migrated to the state.
"Very often, you're not taken seriously by doctors," said Dayle Ann Stratton
of Proctor, who suffered from Lyme disease for 15 years before it was
diagnosed last year. "Many refuse to believe that Lyme Disease has made its
way into Vermont."
While Stratton didn't contract the disease in Vermont - she was living in
Washington state at the time - she said she has met many others who have
come down with the disease here.
Stratton, 60, said her lengthy term with the disease cost her everything she
enjoyed. The pain, weakness and loss of memory brought on by the disease
made it impossible for her to work, exercise or maintain any semblance of a
social life.
"I used to kayak until one day, I put the kayak in the water and found I
couldn't lift the paddle," she said. "I was so weak, I collapsed and
literally crawled up the hill toward my house. I couldn't make it so I just
lay there. My neighbors found me when they woke up."
Over the years, Stratton said she has been misdiagnosed many times. Finally,
she researched Lyme disease herself and insisted on being tested for it.
"The nurse practitioner I had said she would humor me and run the test," she
said. "I felt so vindicated when the results came back."
State health officials said they know Lyme disease can be contracted in
Vermont, but such incidents are rare.
Of the 37 cases reported last year, only 11 were contracted in the state,
according to acting state epidemiologist Susan Schoenfeld.
In 2001, only three of the 18 cases in the state were contracted in Vermont.
Forty cases were reported in 2000 - 12 of those people were bitten by ticks
in Vermont, she said.
"The message we're trying to get to doctors is we know people can get it
here and we think the number of instances is probably under-reported, but
there's no information that Lyme disease is common in the state," Schoenfeld
said.
While it is rare, Schoenfeld said her department reminds doctors to be on
the lookout for Lyme disease, which is much easier to treat in its early
stages.
One of the main things doctors are asked to look for is a "bull's-eye"
rash - considered a dead giveaway that the disease is present. The rash,
which looks like a red, circular, flat welt, appears in many cases of Lyme
disease.
But not all, and the rash doesn't always look the same.
Stratton said her rash was misdiagnosed as ringworm the first time it
appeared. About half of those who contract the disease never develop a rash
of any kind.
Without the tell-tale rash, the disease can be hard to detect, health
officials said.
Forty-nine-year-old Catherine Red Bird Andrews' symptoms were regarded for
years as the mental and physical side effects of a degenerative disk
disorder.
The Brandon resident followed her doctor's orders for more than 10 years
before she found out she had Lyme disease. She suspected for some time that
Lyme was behind her fatigue, sleep disorders and Bell's Palsy - which causes
the muscles in her face to slouch.
But it wasn't until she was diagnosed with thrush, a form of oral yeast
infection, that her doctor was convinced that she had Lyme disease.
"Doctors don't want to hear their patients diagnosis because they don't have
a degree hanging on their wall," she said.
Andrew Bushnell, an emergency room doctor at Fletcher Allen Health Care in
Burlington, said the disease can be tricky to find because it can attack
nearly every organ in the body and the symptoms often mimic those of more
common ailments.
"It can be very difficult to spot," he said.
Bushnell has diagnosed the disease several times in the past while working
in a Baltimore, Md., emergency room.
"Down there, it's epidemic," he said. "I've seen it present as heart
blockages when people come in with abnormally slow heart beats. It's easiest
to spot in advanced cases like those, or in the early stages when there's a
rash."
Dr. Wendy Leffel said she has diagnosed several cases of Lyme disease since
she opened her wellness center in Center Rutland.
"After the first one or two, I began reading about it," she said. "I found
out that my training in Lyme disease was completely insufficient."
Leffel, who diagnosed Leach with the disease, said doctors need to do a lot
of detective work to piece together Lyme's various symptoms, which often
change over time.
"You need to look at the background and put together a whole checklist," she
said. "There are often odd sorts of symptoms that don't fit into anything
else."
Doing homework on the disease and a patient's symptoms is also important
when evaluating negative test results for the disease, she said.
Often, people who have the disease will test negative, she said, but if a
doctor strongly suspects that Lyme disease is present, they should order new
tests.
Leffel also believes that many Vermont doctors are too easily dismissing
Lyme disease as the potential root of their patients' problems.
"What I see talking to people is that there's still a false sense that it's
all down in Massachusetts and Connecticut," she said. "It seems to me that
it's under-appreciated in terms of how common it might be."
Contact Brent Curtis at brent. curtis@rutlandherald.com.
Copyright © 2003 Rutland Herald and Barre-Montpelier Times Argus
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