Lyme Disease: The Real Truth

Cathy Kirkland* first noticed it in the summer of 2003: a large red inflammation spreading outward from her left ankle in a horrible bull’s-eye pattern. She was only 16 at the time, an athletic teenager with an insatiable love of nature. “My life revolved around the outdoors,” says Kirkland, now 23. She’d taken a summer job as a junior forest ranger in southern Alberta’s Crowsnest Pass, near the American border, but it wasn’t until she returned to her home near Legal, Alta., that the rash appeared. “I thought it was simply a bad bug bite.”

In the months that followed, Kirkland’s leg and foot became so swollen, she couldn’t wear a shoe. The skin was red and hot to the touch. She visited a hospital: Doctors told her to purchase an over-the-counter cream. She did. The cream did nothing. The swelling eventually receded. Life went on.

But after a few months, Kirkland noticed her body becoming weak: “It felt as if my mind wanted to be active, but my body just wouldn’t let me.” A family doctor referred her to multiple specialists. Eventually, she was diagnosed with blood clots and was put on medication. But her fatigue worsened and she was forced to cut back on sports and other physical activity.

“Doctors had no answers, and I was bumped from one hospital to the next,” says Kirkland. Several physicians thought her symptoms pointed to multiple sclerosis (MS) and treated her for that. “To be told you might have MS at 17 is like a death sentence,” she says. “I lived in hospitals and on medication. My life turned into nothing.”

When the steroids Kirkland was prescribed for MS had no effect, her family’s online research led them to suspect that she had Lyme disease. “We mentioned to a neurologist that my symptoms were similar, and she looked at us and laughed,” says Kirkland. “She assured us that we don’t have Lyme disease in Canada.”

Named after the Connecticut town where it was first diagnosed, Lyme disease is caused by the bite of a tick infected with the bacteria Borrelia burgdorferi. It is the most common vector-borne disease (a disease transmitted by an organism such as a mosquito or tick) in the United States, with over 28,921 confirmed American cases in 2008. Yet in Canada, public-health officials claim that cases hover around 20 to 60 a year. It’s a figure that doesn’t sit well with the myriad Lyme disease support and advocacy groups that have sprung up across the country in recent years. Members of these groups question the reliability of statistics that seem to imply that ticks stop at the border. They claim Lyme disease in Canada is a silent epidemic.

“I think in ten or 15 years, when the tests improve and there’s better medical knowledge, the health authorities will look back on this period in time and be shocked,” says Gwen Barlee, a British Columbia Lyme disease advocate and former patient. “I think Lyme disease is going to be far more widespread than doctors anticipate or acknowledge, and they’re going to have a real medical problem on their hands.”

From prevalence and research to diagnosis and treatment, nearly everything about Lyme disease in Canada is contested. Aside from the cause of the disease, there are only a few basic facts on which most doctors, researchers, advocacy groups and patients can agree: Early symptoms tend to include fatigue, fever, chills, headache, muscle and joint pain, swollen lymph nodes and “erythema migrans”—a rash at the site of the bite that can appear in the form of a bull’s eye.

If diagnosed early, Lyme disease can usually be treated with a single course of antibiotics lasting from two to four weeks. But if it goes undetected, Lyme disease can lead to arthritic symptoms, heart palpitations, multiple skin rashes, extreme fatigue and central and peripheral nervous-system disorders. Untreated patients in later stages can become severely incapacitated. And because the symptoms so closely mimic other conditions—multiple sclerosis, Parkinson’s, arthritis and Crohn’s disease, to name only a few—patients are often misdiagnosed and receive unnecessary treatment and even surgery.

*Name has been changed to protect privacy.