N.S. doctors ignore reality of Lyme disease, victim says

Halifax Herald - Halifax, Nova Scotia, Canada
More than a little ticked off
N.S. doctors ignore reality ofLyme disease, victim says

By EVA HOARE / Investigative Reporter / SPEICAL REPORT

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.

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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."