Community Connection: NW Lyme Disease Support Network
Rita Stanley, Ph.D.
c/o Good Samaritan Hospital
1015 NW 22nd Ave., N-300
Portland, Oregon 97210
E-mail: ritastan@worldnet.att.net
(503) 413-7348
NOTICE NEW MEETING TIME ........ 1-3 pm
* regularly scheduled meetings 1-3 pm call Bi-Monthly on Sunday
NW Lyme Disease Support Network (The Dalles)
Vickie Lawson
(541) 296-9597
Our OR Resource Center is located at Good Samaritan Hospital.
You may
borrow books and tapes from the center for free. They will
be sent to
you if you live a reasonable distance away (call and check):
Available at Good Samaritan for Borrowing
(503) 413-7348
BOOKS:
"Everything You Need to Know About Lyme Disease"
"The Many Faces of Lyme Disease"
"Coping with Lyme Disease"
"The Widening Circle"
VIDEOS:
"Lyme Disease: What You should Know" LDF Tape
"Lyme Disease: Facts for Kids" LDF Tape
"Lyme Disease: Diagnosis & Treatment" 1993 LDF Tape
Dr. Burrascano
Dr. Brain Fallon – Neuropsychiatric Lyme
Dr. Kenneth Liegner – Chronic and Neurologic Lyme disease
Dr. Bernard Raxlen –" Traditional, Complementary, & Allopathic
Approaches
to Lyme Disease"
DIAGNOSIS MEANS RELIEF MAY BE COMING FOR BEND MAN
By Rebecca Merritt
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.”
The Bulletin Online: www.bendbulletin.com
LYME DISEASE: LOOKING FOR ANSWERS
By Rebecca Merritt
The Bulletin, Bend, Oregon
Sunday, September 12, 1999
Tom Norris used to love to stomp around the woods near Bend with his family. He liked the physical work of his job as a contractor and enjoyed throwing a baseball with his son.
Now dependant on a wheelchair, Norris, 42, had to give up his work for an office job. He is no longer able to go on hikes with his family as he suffers from strange symptoms that for nine years have come and then gone, only to be replaced by new symptoms.
"I would just be sitting there and I'd start hurting," Norris said, explaining the random pain he would feel in his arms, legs and shoulders. "It would just happen all of a sudden."
For nine years he was told the cause of his problems was multiple sclerosis, an inflammatory disease of the central nervous system. His brother also has been diagnosed with MS, but it 's not said to be a hereditary disease, although there is evidence that some susceptibility is passed on. the suspected cause of multiple sclerosis is an autoimmune disease somehow linked to a viral infection.
Norris and his wife believe he instead has chronic Lyme disease, an infection caused by a bacteria called Borrelia burgdorferi that is transmitted by ticks. The disease has many of the symptoms that Norris said he is experiencing, and it can be treated with antibiotics. He recalls a tick bite nine years ago during an outing near Sunriver.
Norris was determined enough to visit a Lyme disease specialist in New York, with the help of money raised by friends in the Bend community. He has not been diagnosed with Lyme disease. An initial urine test showed high levels of Lyme, but many medical professionals doubt the reliability of that test, according to Susan Tobias of the American Lyme Disease Foundation (ALDF).
Physician assistant Gerald Simons, who is treating Norris at Dr. Joseph Burrascano's clinic in New York, said his clinic has had good results with the urine test. To be sure, though, Norris is undergoing a series of tests, including blood tests and a spinal tap. The tests available are not 100 percent accurate and the clinic wants to do extensive studying, Simons said.
He will return to New York on Sept. 25 for a follow-up and to see if he qualifies for treatment. Simons said Norris could have Lyme or a virus that causes MS. Or his body could have two infections because Lyme disease can cause some stealth viruses to be active.
"I'm just hoping and praying that it is Lyme disease so that I can be cured," Norris said. "If this comes through, this will be a miracle for me."
Whatever the result, Norris's situation calls attention to the potential risk of Lyme disease in Oregon and a surprising political and emotional debate surrounding the disease.
Once only an East coast problem, the disease is coming to the Northwest via the Western black-legged tick, also called a deer tick.
"It does seem to be slowly spreading from Northern California to Oregon," Tobias of the ALDF said.
No cases of Lyme disease were reported to the Deschutes County Health Department last year, and it's more of a problem in Western Oregon, where the deer tick prospers in the warmer, more humid climate. Even in Western Oregon, the number of cases reported is low compared to the East coast.
Dr. John Chunn, an infectious disease specialist at Central Oregon Pediatrics, said Lyme disease is rare in Central Oregon. He has seen two cases where people were infected here and a few others where they contracted the disease somewhere else. Recent studies have shown that virtually none of the ticks here carry the bacteria that causes Lyme disease, he said. There is a soft-bodied tick here than can transmit relapsing fever, which is not as serious as Lyme, he said.
But, Rita Stanley, director of the Northwest Lyme Disease Support Network, who operates a resource center at Good Samaritan Hospital in Portland, said she knows of more cases that have gone unreported.
"Lyme is endemic in Oregon," Stanley said. "It is here. To what extent, we're not really sure."
Stanley, who used to have Lyme disease, is working to educate Oregonians and is hosting a free seminar put on by the Lyme Disease Foundation (LDF) on Sept. 25 at the Linfield School of Nursing in Portland, from 1 to 3 PM. One of the unreported Lyme cases Stanley points to is a former Burns resident who used to fight wildfires in Central Oregon. Darren Moore, who now lives in Portland, believes he contracted Lyme disease from a tick bite he received along the Donner and Blitzen River in Eastern Oregon. He too was diagnosed with MS, but went to a specialist in California who diagnosed him with chronic Lyme disease and gave him an antibiotic for Lyme that has helped him, he said.
"When I started taking this medication, I could just feel the symptoms gradually decrease," Moore said.
Stanley said there is a fierce political environment surrounding Lyme disease that is forcing patients like Moore to leave the state to get treatment.
She points to two highly divided factions in the medical community: one that claims Lyme disease is overdiagnosed and overtreated and the other that believes it's underdiagnosed and that doctors are not educated enough about the disease, she said.
"There's a war out there," said Dr. Kenneth Liegner, who specializes in Lyme disease in New York and is studying the connections between Lyme disease and other infectious diseases and MS.
"It's a time of change. Conventional ideas that have been accepted as the truth are now being challenged."
Stanley said it's reached the point that some desperate Northwest patients who believe they have Lyme disease are going to Mexico for treatment because they can't find a doctor to help them. One patient buys antibiotics from an animal supply house.
"These things I cannot recommend. These are survival tactics." Stanley said. "Its sounds pathetic but that's what these people do."
But Chunn said doctors in Central Oregon are well educated about the disease and are diagnosing and treating it properly in the few instances it has occurred. He said Lyme disease is the fashionable disease of the moment, just as sick building syndrome was in the 1980's, which may be the reason for the stir.
"I think in Central Oregon it's not overtreated or undertreated," he said. "I think the physicians of this community are pretty cognizant of Lyme disease."
One of the biggest issues in the war over Lyme disease is whether Lyme disease can easily be confused with MS or other diseases, as in cases like Norris and Moore.
Chris Malinowski, an LDF spokesman, said the group gets frequent calls from people who thought they had MS but are finding their conditions improved with Lyme disease antibiotics.
Liegner, the New York doctor, said it is easy to confuse the two. "The presentation, the symptoms, the MRI findings and even the spinal fluid findings can be similar," Liegner said, adding that he has even wondered if the two are the same disease, causing considerable controversy. "It's very difficult to distinguish between the two."
Liegner said he has seen dramatic improvements in some patients who were thought to have MS but were treated for Lyme disease. However, he advises that doctors and patients should carefully evaluate the symptoms and tests before going ahead with treatment.
"This kind of situation requires very careful, very thorough, very in-depth evaluation," he said. "If you have data that is supportive, then it might warrant a trial of treatment."
The antibiotics used to treat Lyme disease have some adverse effects and it would be foolish to embark on treatment unless you are positive it is Lyme, he said.
But while Liegner says the confusion is common, Dr. Patricia Coyle, a neurologist also from New York who is looking into the connection, said it is very rare for doctors to make a misdiagnosis when it comes to MS. The diagnosis process for MS is very involved, she said.
"MS is a diagnosis you don't make lightly," she said.
Chunn added that there are no studies to prove the benefits of treatment for people who have neurological symptoms, and it may be a placebo effect that some of these people are experiencing. He also said that not all Lyme disease patients suffer from neurological illness, so it is difficult to think that MS and Lyme disease are alike. Also, MS patients are typically between the ages of 20 and 40 and live in temperate climates, whereas Lyme disease is not age specific, he said.
With such an apparent divide, it's difficult to find clear answers about Lyme disease. And although there are not a lot of instances of Lyme in Bend, people here travel a lot of places where they could get infected and need to be aware.
"Us humans don't stay in one place," said Dr. Michael Caldwell, health commissioner for Dutchess County, New York, and one of the investigators for the new Lymerix Lyme disease vaccine. "Unless you're never really going to leave your area, that doesn't matter."
Tobias of ALDF, said there's a lot people do not know about the disease because it was discovered only about 20 years ago.
Lyme disease can be an easy or difficult disease to diagnose, Caldwell said. He follows the formal recommendations of the American College of Physicians when testing and treating the disease, which tells doctors to do the best they can based on scientific evidence.
The obvious signs that a patient has Lyme disease are the tick bite and a bull's eye rash that appears after the bite, followed by flu-like symptoms. However, some patients do not get the bull's eye rash. Continuing symptoms include muscle and joint pain, fatigue, headache and chills and fever in the early stages of Lyme and numbness and pain in arms or legs, paralysis of facial muscles, stiff neck and abnormal heart beat in the second stage. Left untreated, the disease could lead to chronic arthritis. Caldwell said Lyme disease can at first be indistinguishable from other illnesses, but doctors should be able to get a clear picture later on through an MRI. The two most common tests are blood tests that test for antibodies. It's very rare to have a false negative with the blood tests although a false positive is possible, Caldwell said.
But that's another area of disagreement. Liegner said it is possible to have false negatives on the blood tests and the diagnosis is not as clear on the MRI.
So is there anything people agree on ? People on both sides of the issue say people need to be aware of the disease. They want people to understand the symptoms and watch out for ticks, especially in endemic areas.
Here's some advice if you're worried about Lyme and visiting tick-infested areas: Wear light colored clothing so that ticks can be spotted more easily, tuck pant legs into socks or boots and shirts into pants, spray insect repellent containing DEET on clothes and exposed skin, wear a hat for added protection and walk in the center of the trails. Be sure to check for ticks and remove them. Chunn said ticks need to be on your body for at least 24 hours to infect you with Lyme disease.
"If you're going into the woods, be prepared to check yourself when you go home," said Moore, the patient who used to live in Burns and is now telling anyone he can about the risk of Lyme disease.
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Wednesday, April 7, 1999
Here are the latest numbers on these reportable diseases in
Oregon.
Disease
Week
ended
3/27/99
1999
to
3/27
1998
to
3/27
Lyme
0
2
1
Source: Oregon Health Division
-AUTHOR/AGENCY-
Thoele, Mike
-SOURCE-
The Register Guard
-YR/MO/DA-
1992/05/26
-YEAR-
1992
-PAGE-
1B, 4B
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
-SUBJECT-
Ticks as carriers of disease
Lyme disease. Patients. Springfield
Travis, Vicki [Por]
HEADLINE-
Going to woods? Beware this tick
-AUTHOR/AGENCY-
Mortenson, Eric
-SOURCE-
The Register Guard
-YR/MO/DA-
1988/06/12
-YEAR-
1988
-PAGE-
1A, c1-2; 4A, c1-4
-SUBJECT-
Lyme disease
Ticks, as carriers of disease
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
-HEADLINE-
Woman with Lyme disease alters tour plan
-AUTHOR/AGENCY-
Mortenson, Eric
-SOURCE-
The Register Guard
-YR/MO/DA-
1992/07/21
-YEAR-
1992
-PAGE-
3C
-SUBJECT-
Travis, Vicki [Por]
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
-HEADLINE-
Beware the tiny tick, which can cause real problems
-AUTHOR/AGENCY-
Newman, Doug
-SOURCE-
The Register Guard
-YR/MO/DA-
1989/06/27
-YEAR-
1989
-PAGE-
5D
-SUBJECT-
Ticks
Lyme disease
Rocky Mountain wood tick
,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,
Lyme Disease risk at Camp Rilea, Oregon
http://www.utech.net/users/10766/080.txt
Lyme Disease Oregon, possible resource see authors list