Patients living in Lyme disease 'medical limbo' push for federal strategy

The health issues piled up for Donna Lugar, one on top of another: She had breathing trouble, vision and hearing problems, even heart issues, but finding a cause was elusive.

"Occasionally I would get a diagnosis," said the 55-year-old Halifax resident. "But a lot of tests were coming back negative."

By 2010, almost a decade after her problems began, Lugar said she was diagnosed with tetanus, but treatment didn't help. Finally, inSeptember 2011, she found a doctor in Cape Breton who diagnosed and treated her for Lyme disease.

Persistent problems

Lugar said a large part of her problem is that she never presented to doctors with a classic indicator of Lyme disease: a bull's-eye rash.

"I never saw an attached tick and I never saw a bull's-eye rash," said Lugar. "To this day I can't tell you with 100 per cent accuracy that, 'Yes I have tick-borne diseases,' because there isnot a test that can tell you."

Lugar says she is far from alone. She and other advocates say persistent problems in the fight against Lyme disease including a lack of awareness, diagnosis and treatment by doctors has left large numbers of Canadian patients frustrated as they battle chronic symptoms.

They say those problems need to be addressed as the prevalence of the bacterial infection caused by black-legged ticks increases and as federal health officials develop a new plan for the prevention,identification and treatment of the disease.

Lyme disease cases up

Canada's chief public health officer, Dr. Gregory Taylor, believes more needs to be done for patients like Lugar who feel abandoned by a system that is still learning about a disease that isonly now emerging as a growing health threat.

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Taylor said that as of 2015, 917 cases of Lyme disease were reported to the Public Health Agency of Canada. That's up from the 144 cases reported in 2009 when the disease was designated as nationally notifiable.

Taylor said the estimated cases are likely higher because many are unreported or go undiagnosed by doctors who simply aren't thinking to check for Lyme.

The ticks have been found in areas of Nova Scotia and B.C., as well as in southern Ontario, New Brunswick, Manitoba and Quebec.

Early detection of Lyme usually results in treatment through a short course of antibiotics, however Taylor said symptoms of early-stage Lyme are often vague and initial lab tests don't work well.

"We don't have a good lab test that detects the bug in your bloodstream," he said. "We look for antibodies and those don't get produced for several days after one is infected and so early on the test can be absolutely negative."

Taylor said for that reason his agency has been encouraging doctors to treat clinically for Lyme "on spec."

However, he said many doctors are reluctant to treat with antibiotics, and "for good reason," because they can cause as much harm as benefit.

Issues with treatment

Dr. William Bowie, of the Association of Medical Microbiology and Infectious Diseases Canada, said prolonged courses of antibiotics are problematic given their associated risks and medical doubts about whether people with so-called chronic Lyme even have the disease.

Bowie, an infectious disease specialist, said the risks include things such as allergic reactions, gastro-intestinal problems, and interference with bile flow. As well he said future infections couldend up harder to treat because of built-up antibiotic resistance.

"For people who have clear Lyme disease I'm totally happy to use those drugs, because we have good evidence that they work and the benefits exceed the risk," said Bowie.

But he said the viewpoint of infectious disease doctors changes when it comes to diagnosis and treatment that aren't based on objective evidence.

"The difficulty that we as infectious disease and public health people have is we don't put weight on data or on guidelines which are not evidence based," said Bowie.

Need for research

A conference was held in Ottawa last May as part of the development of a national plan to address the disease. It brought together patients, researchers and medical experts.

Taylor, who co-chaired the conference, said it's clear more surveillance of the disease and ticks is needed along with more education for the public and for doctors.

"Underlying all of that is the need for research," he said.

Canadian Lyme Disease Foundation president Jim Wilson, who was also a conference co-chair, believes the upcoming federal plan must at the very least change medical thinking in two key areas.

"We need to stop emphasizing the rash and we've got to definitely stop trying to tie the diagnosis to the individual having been to a known endemic area," he said, noting that ticks are often
transported by migratory birds.

'Medical limbo'

Wilson, who contracted Lyme disease in 1991, also thinks freeing doctors to clinically treat the disease is "essential."

Taylor said the framework plan is expected to be released within the next few months, while a report on the conference should be available within a few weeks.

As for Lugar, her treatment, which involved a lengthier course of antibiotics, lasted until 2013, when her doctor closed his practice amid questions about his methods.

Lugar said she's since been left to manage her symptoms, living in what she describes as a kind of "medical limbo."