Bringing Lyme disease out of the woods

For sufferers, much of the problem has been medical ignorance. Maria Kubacki reports.

Laurie Fraser knows exactly where she was when she got bitten.

It was in the Mud Lake Conservation Area near Britannia Beach.

She remembers because she walked there only once, in the fall of 2003, while on a break from painting her new house.

Something bit her on the neck and it hurt. A few days later, she got a rash with a white spot in the middle. Ms. Fraser suffers from allergies and often has rashes, so she thought nothing of it, assuming she was having a reaction to the paint.

But about two weeks after the rash appeared, she developed flu-like symptoms and back pain. "I could barely get out of bed," she says. A month later she went to the hospital seeking treatment for the pain.

Over the course of the next 15 months, the 43-year-old ESL teacher endured a bewildering array of symptoms -- back pain, chest pain, headaches, nausea, swollen glands, night sweats, dizziness, extreme fatigue, tingling in various parts of the body, a sense of confusion, heightened sensitivity to noise and light and even partial facial paralysis, or Bell's Palsy.

She saw specialist after specialist, each with their own theory. She spent thousands of dollars on nutritional supplements and alternative health remedies.

Finally, she found an Ottawa doctor specializing in environmental medicine who diagnosed her with Lyme disease, a tick-borne illness caused by the spirochete Borrelia burgdorferi and known for its varied, often non-specific symptoms, as well as its ability to mimic other conditions.

The disease was first recorded in 1977 in Lyme, Connecticut, where unusually high numbers of children were being diagnosed with juvenile arthritis.

Ms. Fraser, who has travelled to India and Thailand, and lived in Nepal and Turkey, says she's been exposed to some nasty bacteria, so it's ironic that she got sick so close to home.

"Here I am in safe little Ottawa, and here's the meanest bacteria that I've ever come across."

Looking back, Ms. Fraser says she's had a typical case of Lyme, starting with the bite and telltale rash -- in her case, not a perfect bull's eye but similar enough to indicate the classic early sign of infection. Yet the local mainstream medical community was not open to the possibility that she had Lyme, because the perception is that we don't have Lyme here, she says.

According to research published in the Canadian Medical Association Journal, blacklegged ticks, also known as deer ticks (Ixodes scapularis) in Ottawa have tested positive for the Lyme disease spirochete.

But the disease is not considered to be endemic in Ottawa -- that is, there is no known established population of Lyme disease-carrying ticks.

Dr. Gary Garber, head of the infectious diseases division at the Ottawa Hospital, says that while he and his colleagues have treated people for Lyme disease, none of the cases they've seen were contracted in the Ottawa area. He was not aware that Lyme disease-carrying ticks have been found here.

In his opinion, patients who have pain, fatigue and other non-specific symptoms but who haven't travelled to endemic areas in Canada or elsewhere, don't have the characteristic rash and don't test positive for antibodies on Canadian tests, don't have Lyme disease, but something else.

Ms. Fraser was recently told she has multiple sclerosis, but she rejects the diagnosis because an American test showed that she has Lyme disease -- which she believes is the true cause of her health problems.

She has been taking antibiotics since January and says the Lyme treatment is working. Most of her most troubling symptoms have lessened or disappeared and, after two years of not working, she's returning to teaching this fall. "I am dramatically improved. I am a human being. I couldn't walk -- I was bedridden." If the medical community were better informed, she believes she could have been diagnosed and treated earlier.

When detected early, Lyme disease is easily treated with as little as four weeks of antibiotics, but becomes harder to manage and may require longer courses of antibiotics (both oral and intravenous) the longer it lingers, because in later stages it can affect the joints, the heart, the brain and nervous system.

There may be many people who are progressing into chronic Lyme disease because the illness is poorly understood and under-diagnosed in Canada, Ms. Fraser and others argue.

According to the Public Health Agency of Canada, an average of about 30 cases have been reported annually between 1995 and 2004, 90 per cent of those in British Columbia and Ontario.

But Canadian Lyme disease Foundation president Jim Wilson thinks the screening test currently used in Canada is inaccurate and the true incidence of Lyme is much higher than official numbers indicate.

"My guess is it's in the tens of thousands," says Mr. Wilson, who says he gets 40,000 hits a day on his website and notes that almost all of the cases in the United States "are directly below our border."

An average of 10,000 to 20,000 cases of Lyme disease are reported annually in the U.S. According to the CDC, the number of cases reported grew 70 per cent between 1992 and 1998.

Distribution is clustered predominantly in eight northeastern states and two north-central states, with 92 per cent of all cases reported by those 10 states. Of those, New York -- which shares a border with Ontario -- accounted for nearly one-third of reported cases between 1992 and 1998.

Dr. Harvey Artsob, director of zoonotic diseases for the Public Health Agency of Canada, says in the past, Lyme-infected black-legged ticks were concentrated in the southern parts of New York State, but "we're not saying the tick isn't moving."

In fact, he acknowledges the tick -- carried by migratory birds and other hosts -- is moving north from southern New York, towards the Canadian border and "to places like Ottawa."

The agency has no evidence to support Mr. Wilson's estimate of tens of thousands of undetected Canadian cases of Lyme disease, he says. However, he acknowledges that while the ELISA screening test is considered to be 90-per-cent accurate (the Western Blot, the second test in the two-step process, is thought to be as much as 98-per-cent accurate), the tests are not perfect and some cases will be missed. He admits it's theoretically possible that tests used in California or elsewhere are picking up cases that Canadian tests have missed. Lyme disease is a clinical diagnosis, in any case, he points out. Patients who have been diagnosed clinically by a physician should not be denied treatment because of negative test results -- which Dr. Artsob says should only be used as supportive evidence rather than absolute confirmation of the presence or absence of the disease.

In addition, Lyme is not a nationally reportable disease, so the agency relies on canvassing the provinces for data -- and not every province requires that Lyme be reported.

According to the most recent statistics from the Ontario Ministry of Health and Long-Term Care, between 1999 and 2003 there were 142 reported cases of Lyme disease in Ontario. Of those, 96 contracted Lyme while travelling (mainly to the U.S. or Europe), 25 had unknown travel histories and 21 were deemed Ontario-acquired infections.

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Only two confirmed and one probable case of Lyme have been reported to Ottawa's public health department this year, with similarly low numbers of cases over the last five years.

Paula Arnold, the city's manager for communicable diseases management, says "we're not an endemic area for Lyme disease," although she acknowledges that, as with other diseases such as the flu or West Nile Virus, there are probably more cases than are reported.

"I'm almost certain of it."

How much more is the question. Ms. Arnold says "there can't be that many because we don't hear about it."

This year's cases were all linked to travel outside Canada, and they've never seen Lyme disease arise from a local tick.

However, the public health department does not routinely test for Lyme disease as it does, for instance, for West Nile Virus, and Ms. Arnold acknowledges that "the host area in Ottawa is able to support ticks with Lyme disease." The Mud Lake Conservation Area has not been tested.

The Ottawa Lyme disease support group includes people who, like Ms. Fraser, believe they contracted the illness in Ottawa or in the surrounding area.

Forty-five-year-old Silvy Gibbs believes she picked up a Lyme-infected tick from her dogs in her back yard in Navan.

Donald Pardy, 40, who worked as a security guard for Atomic Energy Canada, thinks he contracted Lyme at work in Petawawa while on patrol in wooded areas.

Like other members of a new local Lyme Disease support group who were told there is no Lyme Disease here, both were sick for years before being diagnosed with Lyme.

Ms. Gibbs was told she had fibromylagia, and Mr. Pardy was diagnosed and even treated for multiple sclerosis for several months before an MRI scan showed that was not the case.

The co-facilitator of the Ottawa group, Michele Lonergan, was diagnosed with chronic fatigue syndrome 14 years ago and even co-founded a local chronic fatigue support group before finally being diagnosed with Lyme about a year ago.

Her son was also recently diagnosed with Lyme and she suspects she transmitted it to him through breast milk.

Fifty-six-year-old Joan McComas, who co-founded the group in May, was diagnosed first with multiple sclerosis, then with a rare, terminal degenerative illness. Like many in the group, she tested negative on the ELISA test but finally, a California laboratory Western Blot test and a DNA-based test at a New York lab both showed that she had Lyme Disease -- which she thinks she acquired not in Ottawa, but in the Thunder Bay area while wilderness canoeing.

She was actually relieved to hear it was Lyme. "It was treatable. I wasn't dying anymore."

Ms. McComas's story has a happy ending. She eventually found an Ottawa doctor willing to treat her, although she first had to seek help from a Lyme Disease expert in New York. (She and others in the Lyme support group are reluctant to give their doctors' names, for fear of subjecting these physicians to scrutiny from a medical community resistant to the idea that there is Lyme Disease here).

The formerly active outdoors-woman feels much better, although she still has lingering problems with concentration and multi-tasking, tires more easily and is still on leave from her job.

Ms. McComas regards herself as "a real success story."

But by the time she was diagnosed, she'd been ill for four years with pain, extreme fatigue, jerking of the limbs, difficulty walking and problems with memory and speech.

She feels she was dismissed by doctors (including neurologists and infectious disease specialists) and suffered needlessly because of the medical community's ignorance. "I don't want what happened to me to keep happening to others, and it is happening to others," she says.

Ms. Fraser, too, feels lucky -- lucky that she had such a severe onset that she was motivated to get diagnosed and treated relatively quickly. Her treatment is ongoing, but she says, "I'm expecting to recover completely." By next summer, she hopes to be "100-per-cent" cured.

But she wants to raise awareness about the potential danger lurking at Mud Lake Conservation Area, where she took that fateful walk two years ago.

"There's kids at Mud Lake all the time and people with dogs. I worry about them."

Lyme Disease, And How to Avoid It

Symptoms: The classic first sign is a rash known as erythema migrans, which appears three days to a month following a bite by an infected tick. Most bites are from a tick in the nymph stage of its life cycle, when it is about the size of a poppy seed. The rash varies in shape but may look like a bull's eye. Common sites are the thighs, groin, trunk, and armpits. However, not everyone remembers the tick bite or the rash. Flu-like symptoms may follow, including fatigue, chills, fever, headache, swollen lymph nodes, and muscle and joint pain.

Later symptoms may not appear for weeks, months or even years after a tick bite and include: arthritis, an irregular heart beat, problems with memory, pain, numbness, paralysis (often of the facial muscles), meningitis, fatigue or sleep disturbances.

Diagnosis: Lyme disease is a clinical diagnosis. Testing should be used only as supportive evidence rather than confirmation of the absence or presence of the disease, says Dr. Harvey Artsob of the Public Health Agency of Canada.

The two-step testing process recommended by the Centers for Disease Control and Prevention (CDC) in the U.S. is used in Canada. Both the initial ELISA screening test and the second-step Western Blot test detect antibodies. The Public Health Agency of Canada considers the ELISA to be 90 per cent accurate to antibodies to the Lyme bacterium, while the Western Blot -- which is used if a sample tests as positive or indeterminate on the ELISA screening test -- is considered 98 per cent accurate in detecting IgG antibodies. However some, including Jim Wilson of the Canadian Lyme disease Foundation, say that the ELISA test is unreliable and misses many cases of Lyme.

Many symptoms of Lyme disease are similar to those of other disease. Patients with Lyme are sometimes initially diagnosed as having chronic fatigue syndrome, fibromyalgia, multiple sclerosis, ALS, or depression, or told their symptoms are psychosomatic. Dr. Stephen Bock, a Lyme disease expert based in Rhinebeck, New York, says that like syphilis (which is also caused by a spirochete), Lyme disease is "the great pretender" and can mimic many other conditions.

Treatment: A four-week course of antibiotics is the standard treatment recommended both in Canada and the U.S. However, Dr. Bock -- who is on the board of the International Lyme and Associated Diseases Society -- treats Lyme patients with antibiotics (oral and/or intravenous) for a minimum of six weeks, and as long as a year or more until symptoms are under control or have disappeared.

Prevention: Wear long pants tucked into socks and light coloured clothing with long sleeve shirts. Use DEET as a repellent. Walk in the centre of trails to avoid contact with brush, overgrown grass and leaf litter. Check for ticks after possible exposure in wooded or grassy areas.

Sources: CDC, Canadian Lyme disease Foundation, Ontario Ministry of Health and Long-term Care, Public Health Agency of Canada

websites:

www.ilads.org

www.cdc.gov/ncidod/dvbid/lyme/index.htm

www.canlyme.com

www.phac-aspc.gc.ca/id-mi/lyme_e.html