the views in an open ended manner.
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Winnipeg Free Press - PRINT EDITION
DENY, DECRY, DEFY Manitobans wage war with Lyme disease, skeptical doctors
Manitobans debilitated by Lyme disease -- and many more who believe
they are -- are forced to confront a skeptical medical profession and
look for doctors who will help them 'off the grid,' or face expensive
treatment outside the province
By: Larry Kusch
Posted: 09/10/2011 1:00 AM
Elizabeth Wood was 37 years old in July 1985 when she was bitten by a
tick while visiting her parents' home along the Red River north of
Emerson.
She recalls having difficulty removing the insect, which fastened
itself on one of her legs. A few weeks later, she got a rash.
Today, the combination of a tick bite and a rash within 30 days would
alert most, if not all, family doctors to the likelihood of Lyme
disease. Caught early, it's easy to treat with antibiotics.
But a quarter-century ago, little was known about Lyme disease in
Manitoba. Health officials didn't believe it was endemic to the
province. In fact, the first doctor-reported case in Manitoba did not
occur until 1999, and the first confirmed case -- using a strict
federal Health Department definition -- wasn't registered until 2006.
Wood, who now chairs a Manitoba Lyme disease advocacy group, was told
by a doctor at a Winnipeg clinic 26 years ago that she had poison ivy.
She thought she knew a thing or two about poison ivy and didn't buy
it.
She later developed severe flu-like symptoms that doctors now link to
Lyme disease: head and muscle aches, joint pain, fatigue.
"It was like a nightmare, was what it was," Wood said in a recent
interview at her Emerson home.
And it still is. More than a quarter-century after that tick bite,
Wood's condition has not greatly improved. She and her husband have
spent thousands of dollars of their own money travelling to the United
States for diagnosis and treatment for herself and their daughter,
whom they believe also has Lyme disease.
Wood is not alone. An untold number of Manitobans with chronic Lyme
disease symptoms -- including a former deputy minister of health (see
sidebar, page J5) -- have gone looking for answers outside the
province when doctors here failed to help them.
Ernie Murakami, a former British Columbia doctor who was pressured to
stop practising medicine by the B.C. College of Physicians and
Surgeons because of his focus on and treatment of Lyme patients, said
the disease is misunderstood. He says the medical profession is in
denial about what he calls a "major epidemic."
"It's criminal what's happening in Canada," he said in an interview
from Hope, B.C., where he was once chief of staff at the Fraser Canyon
Hospital. "People are having to go across the border (to the U.S.) at
tremendous expense to get treatment."
The B.C.-based Canadian Lyme Disease Foundation believes there are
thousands of cases such as Wood's in Canada. Many of those patients
are confined to wheelchairs, debilitated by the disease's symptoms and
unable to work.
Jim Wilson, the group's president, said the blood tests used to detect
the disease in Canada are faulty, catching only a fraction of the true
cases. That is challenged by infectious disease experts who claim the
two-part lab test used here is the gold standard for detecting Lyme
disease.
The same experts are also suspicious and dismissive of certain
for-profit U.S. labs that are only too ready to return a positive Lyme
result from ill people who have been unable to find a satisfactory
diagnosis for the chronic symptoms that ail them.
Over the past few months, the Free Press has interviewed dozens of
Lyme disease advocates, sufferers, experts and government officials.
Some of those we contacted asked not to be named because of privacy
concerns or the stigma attached to the disease and its advocates.
That's because some in the medical profession consider advocates to be
kooks.
-- -- --
After her unsuccessful medical visit shortly after her tick bite a
quarter-century ago, Wood did not go to a doctor for about three more
years.
By that time her arms and shoulders were so sore, she often had an arm
in a sling. In 1988, she went to a clinic on Pembina Highway, where a
doctor gave her a cortisone shot, which she said crashed her immune
system. A few weeks later, she wound up in the Grace Hospital.
It was the first of several trips to the hospital emergency. The
doctors, unable to diagnose her condition, suggested the pain was all
in her head. They suggested she go to a psychiatrist.
In 1989, she gave birth to her daughter Lizzie. She had spent much of
the pregnancy in bed. "It got to the point where I couldn't brush my
own hair. I was so weak," she said. A chair had to be placed in the
tub so she could take a shower.
Around that time, her sister told her about a sign warning of deer
ticks and Lyme disease near Pinawa. She started doing her own research
on the disease and asked to be tested for it in Winnipeg. She was told
the results were "borderline positive." Doctors ruled it out, she
said, because they thought it did not occur in Manitoba.
Since then, she's said she's been positively diagnosed for the disease
in Ontario and New Jersey. Her health has also deteriorated: she lost
her right kidney, she lost most of the sight in her right eye and
surgeons removed a chunk of her colon.
With a lot of effort she has convinced Manitoba doctors to give her
periodic intravenous and oral antibiotics and is now seeing a rural GP
who has put her on a cocktail of drugs.
She is far from cured. She still has aches and pains and gets tired
easily. But she said that without the antibiotics she would not be
mobile. She would not be able to function.
"I wouldn't be alive."
In her Lyme disease advocacy work, she said she's come across three
people in Canada -- friends of hers -- who have given up hope of ever
getting better. They've committed suicide. One was a young woman from
British Columbia.
"I spoke to her that morning, and she killed herself in the
afternoon," Wood said, her voice catching.
-- -- --
Ernie Murakami has travelled the country advocating for better
diagnosis and more aggressive treatment of Lyme disease. At age 80, he
seems to have more energy than men decades younger.
Until three years ago, he was a practising physician in British
Columbia and taught medical students. He had developed a specialty for
treating Lyme disease patients, but he agreed to give up his licence
three years ago after an investigation by the province's college of
physicians, which labelled him a Lyme "zealot." He estimates he's
treated 3,000 Lyme patients.
"If you don't go along with the (medical) establishment you're
examined and cross-examined and harassed," he said in an interview.
Fighting the college took a toll on his health, he said, so he gave up
treating patients and now simply refers Lyme sufferers to doctors and
naturopaths (who are allowed in B.C. to prescribe antibiotics) who
will treat them.
Murakami thinks that Canadian infectious disease doctors are failing
to take Lyme seriously and that the country's tests for the disease
are too narrow. While just a handful of cases are officially diagnosed
in Manitoba each year, across the border in Minnesota the state
reports 1,000 or more cases annually.
He also takes issue with infectious-disease doctors who are loath to
prescribe more than three or four weeks of antibiotics for patients,
claiming that long-term Lyme disease sufferers require ongoing
treatment with antibiotics.
Murakami has travelled to Manitoba a half-dozen times in recent years
to meet Health Department officials. He's tried to convince officials
here of research, he says, that shows that Lyme bacteria can remain in
the body for long periods of time and multiply -- an assertion most
infectious-disease experts reject.
He and some local advocates are hoping to convince the province to
pass a law that will prevent the Manitoba College of Physicians and
Surgeons from harassing doctors who prescribe long-term antibiotics to
patients with so-called chronic Lyme disease. Such laws already exist
in a half-dozen U.S. states, where the Lyme disease lobby is powerful.
But such statutes horrify infectious-disease doctors and medical
officials on both sides of the border. They see it as politicians
usurping medical decision-making that rightly belongs to physicians.
-- -- --
Dr. Allan Ronald, one of Canada's foremost infectious-disease doctors,
calls Lyme disease "an emerging illness in Manitoba," like West Nile
virus was 10 years ago.
About three years ago, he was part of a committee pulled together by
Manitoba Health to diagnose and document Lyme and other tick-borne
diseases.
"In Manitoba, we can only prove the diagnosis on acute (early-stage)
Lyme disease in somewhere between 15 and 25 patients a year," Ronald
said.
In a recent telephone interview from his cottage, he called chronic
Lyme disease a "very controversial, difficult issue."
In the last few years, he said he's agreed to see more than 30
Manitoba patients who claimed to have chronic or long-term Lyme
disease. About half of them were diagnosed by physicians in the United
States who prescribed long-term treatment with antibiotics. The same
patients wanted Ronald to continue to prescribe those drugs here.
Ronald had them submit a blood sample to test for Lyme. Not one of the
patients tested positive for the disease, he said.
"In my opinion, they need care," he said of the patients. "It's not
that they don't need care, but they need care for a better diagnosis."
Dr. Frank Plummer, scientific director general of the National
Microbiology Laboratory in Winnipeg, said all stages of Lyme disease
are treatable with three or four weeks of antibiotics. "In the very
late stages, some of the symptoms can persist after treatment, but the
disease is still cured."
Plummer said there is no scientific evidence that Lyme disease can
persist in the body for decades, as some chronic Lyme sufferers and
the Canadian Lyme Disease Foundation claim.
Those who claim to have chronic Lyme disease may in fact have some
form of chronic fatigue syndrome or fibromyalgia, he said. "They're
treatable symptomatically. They don't respond to antibiotics."
Likewise, Ronald said it is possible the patients he saw suffered from
a "post-infectious disease fatigue syndrome."
Ronald, celebrated for his work with HIV/AIDS care and prevention in
Africa, warned that there are doctors "who will call everything
chronic Lyme disease." And that makes life difficult for those who
stand by the dictates of scientific research.
He said studies have shown no difference in outcomes for chronic Lyme
disease sufferers who have been given either long-term antibiotics or
a placebo. In one study, a New York state lab sent blood samples from
healthy people to a California laboratory known for issuing positive
Lyme disease results. Two-thirds came back positive, Ronald said.
But Ronald admits that there is a lot that scientists don't know about
Lyme disease. And he noted that two of his own patients have claimed
to have had incredible results from taking antibiotics.
"They've gone from being chronic invalids to being well. And you can't
deny people's subjective experience."
-- -- --
There are whispers that the Manitoba College of Physicians and
Surgeons, like the B.C. college, have leaned on doctors who have
treated considerable numbers of Lyme disease patients. Two Winnipeg
doctors, according to one source, stopped taking new Lyme patients
last year.
Dr. Bill Pope, the college's registrar, said he is prohibited by law
from disclosing any complaints or investigations that do not result in
the discipline of a physician.
Meanwhile, a rural Manitoba doctor, who did not want his name
revealed, said he now has four chronic Lyme patients taking extended
periods of antibiotics. The treatments include daily intravenous
antibiotics for three months and oral antibiotics for six months. He
said he learned of the treatment regime from a Minnesota doctor.
"Patients are definitely feeling better, although I must tell you I
can't give any long-term prognosis... because I've just started that
type of treatment lately," the doctor said.
Most infectious disease experts believe such long-term use of
antibiotics is unwarranted and may be harmful.
"It's certainly not the standard accepted treatment," said Plummer.
"That's way more aggressive therapy than is recommended by expert
bodies."
-- -- --
Dr. Joel Kettner, Manitoba's chief public health officer, said the
province is still figuring out how prevalent Lyme disease is within
its borders -- and how to diagnose it more accurately. "We're very
interested to know how big a problem this is, and we're doing quite a
bit to try to find out and to try to be open-minded about how big a
problem this is."
He said it "could be a misconception" that Manitoba physicians are
generally only willing to treat Lyme disease in its initial stage.
"We're seeing evidence of more recognition, more testing, more reports
of diagnosis and more positive test results."
At the urging of disease advocates, Manitoba has stepped up its
public-awareness efforts on Lyme and the blacklegged ticks that can
carry it.
The province is also hosting a scientific symposium on Lyme disease
next spring in Winnipeg. Researchers from across North America are
expected to make presentations at the event. The province is also
planning a separate forum for members of the public to talk about
their experiences and concerns with the disease, Kettner said.
----------------------------------------------------------------------
Tick talk
What is Lyme disease?
Lyme disease is a bacterial infection that is transmitted to people
through the tick bites. In Manitoba, blacklegged ticks (deer ticks)
can carry the bacteria known scientifically as Borrelia burgdorferi.
Where did Lyme disease originate?
Lyme takes its name from Lyme, Conn., where the disease was
discovered. Researchers didn't identify the cause of Lyme and connect
it to ticks until 1981.
How are ticks infected?
Ticks are infected when they feed on birds, mice, squirrels and other
small animals that carry the Lyme bacteria.
Where are the tick hot spots in Manitoba?
Blacklegged ticks have become established in the southeast corner of
the province as well as the area around the Stanley Trail in
south-central Manitoba. Provincial officials say the ticks may also
have become established along the Pembina River Valley at Pembina
Valley Provincial Park near the U.S. border and at Beaudry Provincial
Park just west of Headingley.
Do all ticks carry the disease?
No, but a lot of them do. For instance, more than one-third of the
ticks found in the Stanley Trail area last year were found to carry
Lyme disease.
What are the symptoms of Lyme disease?
Most people (an estimated 70 to 80 per cent) will develop a red
expanding rash three to 30 days after being bitten by an infected
tick. The rash is usually more than five centimetres in diameter and
can appear like a bull's-eye. Other early symptoms are common to many
diseases and can include a different type of rash, headache, fatigue,
chills, fever, muscle aches, joint pain and swollen lymph nodes. If
untreated, sufferers can develop nervous-system disorders, multiple
skin rashes, arthritis, heart palpitations, extreme fatigue and
weakness and neurological problems.
What is the treatment?
Caught in the early stages, Lyme disease can be successfully treated
with antibiotics. The treatment period is two to four weeks.
How prevalent is it?
There were only 16 reported cases of Lyme disease in Manitoba last
year, up from 11 the year before. But across the border in Minnesota,
health officials reported 1,239 cases in 2010.
How do you protect yourself (and your pets) from Lyme disease?
Use trails whenever possible, and stay to the centre of hiking trails or paths.
Wear light-coloured clothing to make it easier to see ticks crawling
on your clothes.
Cover up. Wear long pants and a long-sleeved shirt.
Tuck your shirt into your pants and your pants into your socks to make
it more difficult for ticks to attach to your skin.
Insect repellents containing DEET are safe and can effectively repel ticks.
Check for ticks after walking in known tick-infested areas. Remove any
you find as soon as possible from yourself, your kids and your pets.
Timing is important as it can take 24 hours or more for a tick to
infect you.
FACT: In 2010, Lyme disease became a nationally reportable disease in
Canada. This means that all medical professionals must report cases to
the Public Health Agency of Canada.
Sources: Manitoba Health, Public Health Agency of Canada, Infectious
Diseases Society of America, Minnesota Department of Health.
Republished from the Winnipeg Free Press print edition September 10, 2011 J1
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