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DIAGNOSIS MEANS RELIEF MAY BE COMING FOR BEND MAN
By Rebecca Merrit
The Bulletin 10/24/99
For the first time in a long time, Tom Norris is dreaming of playing a
round
of golf with his family — without a golf cart.
The Bend man, who is dependent on a wheelchair, was recently diagnosed
with
Lyme disease after nine years of being told he had multiple sclerosis.
Gerald Simons, a physician assistant for Dr. Joseph Burrascano’s office in
New York, said Norris has chronic Lyme, in addition to a co-infection called
Ehrlichiosis — similar to Rocky Mountain Fever — and a virus that may have
been triggered by Lyme Disease. The New York clinic is prescribing treatment
for Norris.
“It’s probably been in his system for many years,” Simons said. “It’s
exciting that we’re able to pinpoint these things.”
Most people wouldn’t be excited to hear they have Lyme disease, which has
numerous symptoms, including joint pain, heart palpitations and facial
paralysis and can lead to crippling arthritis if left untreated. The disease
is an infection caused by a bacteria called Borrelia burgdorferi and is
transmitted by deer ticks.
But for Norris, this diagnosis was a long time coming. This means he can
take antibiotics that may improve his condition.
Simons said there is no clear research to say how much he will improve,
but
“We’ve seen people have some pretty incredible results.”
When Norris was told he had MS, which is an inflammatory disease of the
central nervous system, there was not much hope for treatment. Now there is
the possibility that his body may recover. And, he hopes, maybe he can walk
someday.
“It’s a big relief,” said Norris, at work at his desk at Pearson Mortgage
Services. “It’s like coming out of the desert into this big pool of water.
There is hope.”
Under the guidance of the New York clinic and Dr. Ron Rosen in Bend,
Norris
is beginning to take oral antibiotics. After about a month of oral
medication, he could begin taking the drugs intravenously, depending on how
his body responds to the oral medication. He also is visiting a physical
therapist to help his recovery.
Norris’s case, which was featured in The Bulletin in September, is one
worth
following.
On a local level, Norris is a well-known figure in the community. A
lifelong
resident of Bend who married his high school girlfriend, he can always be
spotted at Mountain View High School sporting events cheering on his two
children. The baseball community rallied behind him and raised money to send
him to the specialist.
On a larger level, his case calls attention to a surprisingly emotional
and
political debate about Lyme disease.
The medical community is divided about how to diagnose and treat Lyme,
according to Rita Stanley, director of the Northwest Lyme Disease Support
Network in Portland, who operates a resource center at Good Samaritan
Hospital.
One faction claims Lyme disease is overdiagnosed and overtreated, while
another insists that the disease is underdiagnosed and undertreated. Some
doctors claim it would be easy to confuse MS with Lyme disease, while others
argue that an MS diagnosis is not taken lightly and it is rare to mix the
two.
Norris, whose brother also was diagnosed with MS, has found himself in the
middle of a highly controversial issue. The situation is so intense that
some people claim there is a perceived witch hunt for doctors who challenge
the traditional methods of treating Lyme Disease, Stanley said.
“He’s flying in the face of convention here,” Stanley said.
The 41-year-old man recalls being bit by a tick during an outing near Bend
nine years ago, and he believes his symptoms better match the description of
Lyme than MS. But he said he had a hard time finding someone who would
believe him about the possibility of Lyme. He said doctors told him he was
in denial about his MS diagnosis.
Lyme disease is rare here. In fact, no cases of the disease were reported
to
the Deschutes County Health Department last year. The ticks that carry the
disease are known to survive better in warmer, more humid climates. A recent
study showed that virtually none of the ticks here carry Lyme. The disease
is more common on the East Coast. In Oregon, it’s more likely to be found in
the valley or at the coast.
But Norris, who has researched the disease on the Internet and at the
library, was determined enough to visit the specialist in New York. An
initial urine test showed high levels of Lyme, but many members of the
medical community doubt the reliability of that test, according to a
spokesman at the American Lyme Disease Foundation.
To be sure, the New York clinic ordered a series of tests, including
several
blood tests, a spinal tap and spect scan to help make the diagnosis.
Simons said the clinic wanted to look at the possibility of a number of
diseases. “You can’t have a narrow focus and look just for Lyme,” Simons
said. “He really got the run over.”
Norris had not undergone a spinal test when he was diagnosed with MS. He
said doctors recommended it but at that point he was upset and didn’t want
to go through with it unless he could get tested for Lyme, too.
Simons said the spinal tap indicated the presence of Lyme disease. In
addition, the spect scan, which is a nuclear brain scan, showed a high
presence of the disease. The report from the radiologist said it looked like
what he sees with Lyme patients, Simons said. The test also showed the
presence of Ehrlichiosis, the disease similar to Rocky Mountain Fever that
may have been transmitted from the same tick that gave him Lyme.
However, a blood test came out negative for the disease and another blood
test was equivocal.
When diagnosing Lyme, Simons said it’s important that physicians pay close
attention to symptoms and patient history because the tests available are
not completely accurate and it’s possible to have false negatives or false
positives. They see all the signs and symptoms with Norris, he said.
But this is another area of disagreement. Dr. Michael Caldwell, health
commissioner for Dutchess County, New York, who sees many Lyme patients,
said earlier that it’s rare to have false negatives but it’s common to have
false positives.
Simons said he is pleased with the Center for Disease Control’s decision
recommendation about diagnosing Lyme, telling doctors to look at the patient
’s history and symptoms before taking into account the blood tests. He
believes this is a positive step forward in treating the disease.
“You need to listen to the patients and hear them out,” Simons said.
Although Norris has the diagnosis he was hoping for, things aren’t going
to
be easy. He expects to feel worse before he gets better and the improvements
will be gradual.
“It’s a long road ahead,” he said.
Stanley, who counsels many Lyme Disease patients and has suffered from the
disease for six years, said Norris faces many challenges, both political and
physical.
On the political side, Stanley said many people will continue to doubt
whether Norris has Lyme. Also, it is tough for some patients to receive the
medication for as long as they need it.
“As he goes through treatment, a lot of people will just say, ‘You have
MS.
Give it up,’” she said.
There’s also the challenge of getting insurance companies to cover the
treatment, Stanley said. Norris said he is in discussions with his insurance
company to see if it will cover the treatment. He expects his medical bills
to run between $30,000 and $60,000.
Also, Stanley said the treatment will be frustrating for him because it
may
be a while before he sees significant improvement. For most patients, there
is a reaction to the antibiotics that can cause patients to feel worse for a
while.
But Norris said he’s determined to follow through with this. He’ll do
whatever it takes.
“It feels good to at least know there’s some hope,” he said. “If I have
to,
I’ll go to Mexico and get my treatment.”
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