Lyme disease is a complex illness that can cause chronic flu-like symptoms for years if left untreated. But many Canadians are not being diagnosed early enough because of an ongoing debate over testing and diagnosis.

Lyme disease was unknown in Canada until the early 1980s, when the bacteria that causes it, Borrelia burgdorferi, was identifed.

Treated early with antibiotics, Lyme disease is short-lived. But left undiagnosed, it can leave victims with chronic flu-like symptoms: painful joints, headaches, and fatigue. It can even go on to affect the heart and the nervous system.

Because the disease cause a spectrum of symptoms, many can wait months, even years, for an accurate diagnosis from doctors who may not think to test for the illness.

B.C. resident Shannon Goertzen felt ill for more than nine months before she was finally diagnosed. "I had unrelenting headaches, stiff neck. There was excruciating bone pain as well," she told CTV.

Her doctors tested her for multiple sclerosis, lupus, rheumatoid arthritis, even for bone cancer. Finally, her doctor determined she had Lyme disease. She's been on an intensive antibiotic treatment ever since.

"On Day 17, I was completely pain-free for the first time in a year," she says.

Karen Amantea also waited a long time for a diagnosis. She went to 30 doctors over eight years looking for help with her symptoms of odd pain and flu-like symptoms. No one could give her an answer.

"It was very frustrating because I felt tired all the time," she says. She, too, was finally diagnosed with Lyme disease.

"I believe there are a heck of a lot more people out there with this," she says.

The Public Health Agency of Canada says there are 30 to 50 cases of Lyme disease diagnosed per year in Canada. But Jim Wilson of the Canadian Lyme Disease Foundation believes that is a vast underestimation.

"We really don't have any way of measuring how bad it is in Canada. We here at the Foundation can only go by the number of people that are contacting us... Right now, we are getting about 2,000 people a year."

Robbin Lindsay of the Public Health Agency of Canada says there is no evidence to support those numbers.

"We don't see any information right now to support the contention that there are thousands of cases on an annual basis," he says. "If you look at the number of human cases, they are reasonably steady from year to year.

"But more importantly, if you look at the distribution of tick populations, those ticks are found in a small number of locations. So the chance of someone coming in contact with a tick in one of the high-risk areas is relatively low."

'These ticks don't stop at the border'

The CDC says that in 2005, there were 23,305 cases of Lyme disease reported in the U.S., most of them concentrated in the northeastern parts of the country. Wilson finds that puzzling.

"When we look across the border, we see tens of thousands of cases confirmed annually within a few hundred miles of the Canadian border, yet when we cross into Canada, we have 58 confirmed cases within Canada? Something is wrong. These ticks don't stop at the border."

Some suspect that Canadians are going undiagnosed because the two-stage blood test used in Canada is unreliable, incorrectly telling many they don't have the antibodies to the Lyme disease bacterium.

"If you are negative on the screening test, they don't go any further. And if you are positive on that screening test, then you also have to have a positive confirmatory test," explains Wilson.

"We say both of those tests in Canada and the criteria by the CDC (U.S. Centers for Disease Control) are flawed."

Joanne Bone had been suffering from severe headaches and crippling fatigue that left her unable to get out of bed. She tested negative for Lyme disease but found the results difficult to believe, since she remembered being bitten by a tick while out on a hike.

"My family was teasing me about lyme disease. We just thought there was no way, because we had not heard of anything happening like that. It is supposed to be very rare."

She decided to have samples tested by a private U.S. lab which uses other testing methods. Those tests found she was positive for the disease. She was successfully treated with antibiotics.

"I pushed on. I went through the medication and feel incredibly great now," she says gratefully.

Canadian health officials maintain confidence in the Canadian test.

"The tests that we do are reasonably reliable the tests and the standards and protocols are in agreement with those used in other countries," says Lindsay.

Part of the problem with testing is that most blood tests do not work until four to six weeks after infection has occurred. As well, the disease has been known to go dormant for periods, also making an accurate diagnosis difficult.

Getting the correct diagnosis is critical because antibiotics can eliminate Lyme disease. Most cases can be cured with two to four weeks of treatment with doxycycline, amoxicillin, or ceftriaxone.

Those not diagnosed until later stages of the illness may have developed neurological or cardiac effects and may require intravenous treatment with penicillin or ceftriaxone. Even then, treatment failure has been reported, requiring some patients to be treated repeatedly.

Lyme disease symptoms

The symptoms of Lyme disease are often described in three stages, although not all patients have symptoms of each stage. The first sign of infection is usually a circular rash called erythema migrans or EM. This rash occurs in about 70-80 per cent of infected persons and begins at the site of the tick bite after a delay of three days to one month. Patients often also experience symptoms such as:

• fatigue
• chills
• fever
• headache
• muscle and joint pain
• swollen lymph nodes

If the infection goes untreated, the second stage of the disease can last up to several months with possible symptoms including:

• central and peripheral nervous system disorders
• multiple skin rashes
• arthritis and arthritic symptoms
• heart palpitations
• extreme fatigue and general weakness

If the infection continues to go untreated, the third stage of the disease can last months to years with possible symptoms including, chronic arthritis and neurological symptoms. If contracted during pregnancy, adverse effects on the fetus, including stillbirth, can occur.

Prevention

Recently, Alberta issued an alert that disease-carrying ticks are being found in the province. And the British Columbia Centre for Disease Control is reminding residents spending time in wooded areas or tall grass to take precautions to minimize the risk of being bitten by an infected tick.

Tips to prevent tick bites:

• Walk on cleared trails
• Wear a hat
• Wear long sleeves and pants and light-colored clothing
• Tuck pant legs into socks or boots
• Use an insect repellent containing DEET on exposed skin

After being in an area that may harbour ticks, inspect your clothing for ticks, and inspect your skin (as well as that of children) for ticks. If you see a tick that's buried itself into your skin, go to your family doctor and have it removed immediately.

What do I do if I spot a tick ?

Prompt removal of ticks from your skin will help prevent infection, since transmission of Borrelia burgdorferi is unlikely to occur when the tick was attached for less than a day or so.

• Carefully use tweezers. Grasp the tick as close to your skin as possible. Pull it straight out, gently but firmly.
• Don't squeeze it. Squeezing can speed up infection.
• Don't put anything on the tick, or try to burn the tick off.
• Disinfect the bite with rubbing alcohol.
• Save the tick alive in a jar or screw-top bottle if you can, and take it to your doctor. Your doctor can send it to a public health laboratory for identification. Establishing the type of tick may help to assess your risk of acquiring Lyme disease.
• Try to describe the area that the tick came from. It will also help public health workers identify areas of high risk.

With a report from CTV medical reporter Avis Favaro and producer Elizabeth St. Philip