Lyme disease in Nova Scotia

http://www.herald.ns.ca/stories/2005/08/08/f201.raw.html

Monday, August 8, 2005

More than a little ticked off
N.S. doctors ignore reality ofLyme disease, victim says

By EVA HOARE / Investigative Reporter / SPEICAL REPORT
[ ehoare@xxxxxxxxx ]

EDITOR'S NOTE: Depending on who you talk to, Lyme disease is either on
the
rise in Nova Scotia or it doesn't exist.

In a series running today and Tuesday, investigative reporter Eva Hoare
reveals disturbing new information about the tick-borne disease and how
it
is taking root in this province.

Perhaps even more disturbing, these stories document how people
suffering
from the disease have found few sympathetic ears in the medical
establishment.

***

It was just a walk on a farm in New Ross, but it turned into a six-year
medical nightmare that has left a lasting bitterness about the Nova
Scotia
health-care system.

Something happened during Kelly Burke's stroll on her father's farm.
She was
bitten by a tick. She remembers removing the tiny parasite from a spot
on
her wrist a few days later, in May 1999.

What she didn't know was she had contracted Lyme disease from that tick
bite. For her, the more significant problem was that it went
undiagnosed for
almost four years. Doctors simply didn't believe she could have the
disease.

Now Kelly Burke says Nova Scotia's medical system failed her, from
denying
she had Lyme to refusing to treat her for it. The doctors did tell her
she
probably had something else, multiple sclerosis, maybe, or psychiatric
problems.

Her symptoms were typical of Lyme disease: extreme fatigue and
arthritis,
blurred vision, weak muscles, partial facial paralysis and bouts of
memory
loss.

But the doctors didn't see that: they suggested MS, Sjogren's syndrome
(an
autoimmune disorder), and sleep and psychiatric disorders.

They put her through dozens of tests, prescribed drugs, including two
antidepressants: Celexa and Wellbutrin. She took a psychiatric
evaluation.
She was cleared on that front.

"You are in just so much pain. It's like being in late-stage labour for
about six years," said Mrs. Burke, a mother of two from Shad Bay.

Desperate, Mrs. Burke and her husband travelled to Connecticut, where
she
was finally diagnosed. (The disease takes its name from Lyme, Conn.)

She got the news from one of the leading American experts on Lyme
disease,
Dr. Amiram Katz, a neurologist and assistant clinical professor at Yale
University.

But even after the diagnosis in March 2003 - about 34 months after the
signature Lyme disease bull's-eye rash appeared on her arm - Nova
Scotia
medical health officials wouldn't concur, the couple said.

"In the United States I have Lyme, but I just don't here in Nova
Scotia,"
Mrs. Burke said in a recent interview.

In an April 25, 2003, notation from Mrs. Burke's medical file, Dr.
Walter
Schlech III, an infectious disease expert here who also saw Mrs. Burke,
was
doubtful about her claims.

"I am still not convinced that this woman had or does have chronic Lyme
disease," he wrote to staff doctors in the microbiology and immunology
department of the Queen Elizabeth II Health Science Centre in Halifax.

A top medical official questioned Dr. Katz's credentials and those of
the
New Jersey laboratory that analysed her tests, the records show.

Reached at his medical practice in Connecticut, Dr. Katz said this
scenario
is common.

"I'm used to this," Dr. Katz said in a recent interview. "Anytime
something
is not falling in line with other peoples' thoughts, the first thing
they'll
do is attack your credibility. It is ridiculous."

Officials with Capital Health declined comment, citing patient privacy.

But the Burkes have plenty to say about the quality of Kelly Burke's
care
here.

"We want to wake up some people." said her husband, Larry Burke.

They believe others are sick with Lyme and in some cases have been
misdiagnosed.

The graphic designer and artist says she drew a picture of the
distinctive
bull's-eye rash often exhibited by Lyme sufferers, but it was
dismissed.

"I felt like I was on trial when I went to see him," said Mrs. Burke of
one
doctor she visited.

By the time the diagnosis came from Dr. Katz in Connecticut, she'd
exhibited
nearly 40 of 44 classic symptoms of Lyme disease, she said. She had
tested
positive on four separate tests in Connecticut and Dr. Katz clinically
evaluated her symptoms.

He later described Mrs. Burke's condition as a textbook case of Lyme.

"The only reason I didn't exhibit all 44 is that I don't have a
scrotum,"
she said, referring to some problems men have with Lyme.

"There was a time when we thought she was going to die," said Mr.
Burke.

Back in August 2001, Mrs. Burke was prescribed the antibiotic
doxycyclene by
Dr. Schlech for Lyme, her medical records show. But she believes he was
just
appeasing her.

"They are clearly convinced that this is Lyme disease and the placebo
effect
associated with active treatment should be strong," Dr. Schlech said in
an
Aug. 27, 2001, letter to Mrs. Burke's GP.

The antibiotic was prescribed for 30 days and her GP extended the
treatment.
In early February 2002, the GP suspended it: senior physicians didn't
believe Mrs. Burke had Lyme. Mrs. Burke said after that, she just got
worse.

Since Mr. Burke posted his wife's story on the Canadian Lyme Disease
Foundation website, they've taken hundreds of calls, many from sick
Nova
Scotians. They told him they've run into the same medical walls.

Aside from the physical symptoms, Mrs. Burke said the ordeal has torn
her
apart emotionally.

She and her husband have initiated legal action against Dr. Schlech,
who is
travelling and could not be reached for comment. No defence has been
filed.

Almost every aspect of Mrs. Burke's life has been affected since the
tick
bite, she said. One of her two daughters is still terrified about her
mother's condition and it has caused a rift among her family members:
some
believe her, others don't.

Because it was left untreated for so long, she alleges she has lasting
neurological damage, ranging from continued severe pain, blurred
vision,
fatigue, muscle weakness and heart palpitations.

Jim Wilson heads the Canadian Lyme Disease Foundation and says he
contracted
Lyme disease near his former home at Bell Lake in Dartmouth in 1991. A
large
number of Canadians are being misdiagnosed with everything from MS to
Alzheimers when they might have Lyme, he said.

"You're right on the major flyways from the most endemic region in the
world," Mr. Wilson said, referring to the Atlantic region.

"Birds are like airliners for the ticks. The ticks are hosts," said Mr.
Wilson, who now lives in Kelowna, B.C.

The first human case of Lyme in Canada was in 1979 near Long Point,
Ont.

In 2004, 38 human cases were reported to the Public Health Agency of
Canada.
Since 1995, there have been 310 cases, with 174 of those recorded as
people
infected outside the country, the agency said.

To date, the Nova Scotia Health Department says three cases have been
recorded here, the first in 2002. The problem area appears focused in
Lunenburg County.

In May 1999, the Public Health Agency said a Lyme-positive tick was
plucked
from a common yellowthroat bird, which migrates to Nova Scotia. It was
the
first sign of Lyme disease here.

The Burkes, Mr. Wilson, Dr. Katz and NDP Leader Darrell Dexter, who's
sought
information from the province, say the most accurate Lyme testing isn't
being used here. Nor do doctors have enough education about the
disease,
they said.

Dr. Katz says the front-line test done here picks up only a fraction of
Lyme
cases. Different tests are used in the U.S. and at the national
microbiology
lab in Winnipeg, they said.

Nova Scotia only sends samples to that lab if a positive result comes
from
the initial test.

But Dr. Kevin Forward, with the QEII's infectious diseases and
microbiology
branch, defended Nova Scotia's test, saying it's "very sensitive." He
said
there isn't enough volume for the other tests to be done here.

He also criticized Lyme groups for putting forward "unconventional
wisdom"
that the province's test is inaccurate.

"I do not subscribe to this and think it is more likely that most of
these
individuals do not have Lyme," he said in an e-mail to The Chronicle
Herald.

"In Nova Scotia the chance of having Lyme with a negative screening
test and
atypical symptoms is very, very remote."

Dr. Forward questioned the credibility of "private for-profit labs"
where
the other testing is done.

Unlike in the U.S. where more than 21,000 cases are on file, Lyme is
not a
"notifiable illness" in Canada. Reporting is voluntary.

Notifiable illnesses here are those requiring immediate public alerts,
such
as forms of meningitis, said Dr. Paul Sockett, with the Public Health
Agency. (The agency advocates different tests than those used in Nova
Scotia.)

The Burkes said the province failed to act on the national health
agency's
warning about the bird carrying the Lyme-positive tick back in 1999,
the
first on a migratory bird in the country.

"These observations serve as an important reminder to the public in
general,
and physicians in particular, that Lyme disease can be contracted in
Canada," the 1999 report said.

The Burkes said despite this, infectious disease and other doctors here
didn't consider Lyme the root of her problems. Her medical file shows
her GP
told her there was no homegrown Lyme disease here.

Health Department spokeswoman Michelle Lucas said the department knew
of the
1999 report but didn't act.

"Obviously, we were informed, the experts kind of looked at it but made
the
decision not to do anything at the time. It was a migratory bird, it
wasn't
prevalent in Nova Scotia at that time," she said. "They didn't do
anything."

A Freedom of Information Act request submitted by the New Democratic
Party
and provided to The Chronicle Herald shows the province sent a letter
about
Lyme to doctors some time after June 26, 2003, four years after Mrs.
Burke
says she was infected.

By 2003, it was clear Lyme-carrying ticks were in Lunenburg County and
sites
in Antigonish County, where a deer tick tested positive. At least one
Lyme-positive tick was found in Halifax County, but provincial experts
didn't feel there was an established population.

Ms. Lucas said another doctor's letter went out a year earlier, in
August
2002, in addition to an article to the provincial medical society.

The documents show Dr. Robbin Lindsay, with the national microbiology
lab,
did several tests here in the past few years, noting Lyme-positive
ticks
would likely expand from their biggest habitat in the Lunenburg County
area.

"I personally can imagine that over time these ticks will spread to
other
suitable habitats," he said in an issue of Tick Tock, a publication
issued
by the province.

"There's no reason why, based on the kind of habitat, that we shouldn't
be
seeing this tick elsewhere."

A QEII microbiology report for 2002-03 shows 17 per cent of the 141
ticks
collected in Antigonish County were positive for Lyme.

Despite provincial efforts, the Burkes and Mr. Dexter say the public
still
doesn't know enough about Lyme and neither do doctors.

They say there may be a number of reasons Lyme hasn't become more
public in
Nova Scotia, from fears over tourism to legal liability and
slow-responding
government agencies.

Mr. Wilson said many provinces say their Lyme cases were brought in
from
other places, such as the U.S.

"They're all saying that, . . . every state and every province, so
where the
heck are all these people getting it from?" said Mr. Wilson. "They're
all
passing the buck."

Money can't be the reason, they say, because treatment after early
diagnosis
simply involves rounds of basic antibiotics.

Mrs. Burke says her ordeal has cost taxpayers and her family. The
Burkes
themselves have spent more than $10,000 US seeking treatment.

Mr. Burke still can't understand the reluctance to pursue Lyme in his
wife's
case.

"If you went in (to a doctor) with acne, they'd be throwing antibiotics
at
you like Smarties."

---

Spreading the Word

What the province says it has done to educate the public on Lyme
disease:

- Letters were mailed to all Nova Scotia doctors identifying symptoms
to
look for. - News release sent this spring from the health department's
South
Shore district, where the risk for Lyme disease is most prevalent. (It
ran
May 14 in this newspaper, and a public service announcement went to a
local
paper.)

- Fact *** detailing the disease is posted on the province's Health
Department website. That was revised in 2005 to include photos from the
U.S.
Centers for Disease Control and Prevention. Pictures included those of
deer
ticks and the signature bull's-eye rash.

- A newsletter item on Lyme disease went home from all schools in the
Lunenburg area (7,300 copies of fact *** included) in May.

- The Town of Lunenburg was contacted to distribute letters to homes in
postal code areas most at risk.

- Pamphlets were distributed to the Bluenose Golf Course.

- Brochures were sent to tourist information centres.

- The Lunenburg Day Care Centre asked for the information.

- A campground owner copied the fact *** her child brought home from
school.

- Deputy chief medical officer of health Dr. Maureen Baikie, along with
medical officer of health Dr. Richard Gould, have done media interviews
this
spring and summer on the topic.

---

The Halifax Herald Limited

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