WHAT YOU NEED TO KNOW
ABOUT LYME DISEASE
By Sean McIntyre
A 2013 Alberta Health study revealed 20 per cent of black-legged ticks sampled in Alberta carried the Lyme-causing Borrellia bacteria. Yet, diagnosis and treatment of the disease continue to be mired in uncertainty, leading to significant discord among many Lyme disease advocates and medical professionals. Sean McIntyre reports on prevention of the disease, and where to turn in the case of a suspicious tick bite.
When Sarah Hutchison grew increasingly tired, got a wicked case of tendinitis, and developed a host of other nagging chronic injuries, she figured balancing a busy work life and passion for mountain sports had finally caught up with her.
Whenever she got a break from her professional life as a psychologist, the Canmore resident could be found exploring the Bow Valley by bike, on foot or skis. The mountains were her life, but it was time for a break.
Unfortunately, Hutchison’s health only got worse.
Hutchison, 44, started to experience intense nerve pain. Moving around was like walking on broken glass, and her headaches grew so painful that bright colours and lights began to bother her. Hutchison jokes that she developed a new appreciation for the colour beige and spartan walls, since these were least likely to trigger a response. The pain left her housebound and unable to work. She slept up to 16 hours a day, sometimes unable to move her arms and legs. Hutchison eventually grew so weak she couldn’t lift her mug off the kitchen counter or press the keys on her laptop. She had trouble sitting, and the sensation of clothing or sheets against her skin was enough to drive pain receptors into overdrive.
“It is so outside of what most people can imagine,” Hutchison says.
Hutchison says her good days are slowly getting better, but she still considers herself lucky if she can take a walk for more than an hour.
“Twelve-hour alpine climbs are on the back burner, but 100 meter slow walks in the forest happen on occasion,” she says.
It took several years after those first symptoms erupted in 2008 that Hutchison was assessed for Lyme disease at a clinic in the United States. Competing opinions about how to test for Lyme, and a longstanding view that the disease just wasn’t prevalent in Canada, are partly why Hutchison decided to get tested in the United States. The diverging opinions ‑ and the illness’ striking similarities to (and frequent misdiagnoses of) diseases like MS, fibromyalgia, ALS and Rocky Mountain spotted fever – complicate determining how many people in Alberta and the rest of Canada live with the disease. All the same, Canadian Lyme Disease Foundation (CanLyme) says 600 cases of the illness were recorded in Canada in 2013.
The group anticipates reports of Lyme disease will grow to 10,000 per year by the end of the decade.
The spread of the disease is attributed to the growing prevalence of ticks across the country, including Alberta. In their young nymph stage, ticks can be barely larger that a poppy seed. They lurk in forest ground cover or tall grasses and shrubs, where they await a passing host. Any tick bite for any amount of time should be treated.
“Not all ticks carry Lyme, but we never know which ones are, so preventing a bite and knowing the symptoms of the disease is key,” says Susan McInnis, founder of the Lyme Disease Association of Alberta (LDAA).
McInnis is a former Lyme patient who feels she’s finally overcome years of constant pain that accompanied her infection. In 2013, near the peak of her suffering, she launched the LDAA as a nonprofit organization that promotes awareness of the disease, the importance of prevention and support to patients and caregivers. The group has since grown to include more than 300 members from across Alberta, the vast majority of whom are personally affected by chronic Lyme disease.
“It was killing me to see these people on Facebook with no place to go,” she says. “We needed to do something.”
McInnis and the LDAA volunteers have spread word of Lyme disease through public information drive, get-noticed advertising campaigns and member-driven events that included a major Lyme disease conference for physicians in February 2015 in Banff, the first event of its kind ever held in Western Canada.
Though the Public Health Agency of Canada says ticks are most commonly found in southern British Columbia, Manitoba, Ontario, Quebec and the Maritimes, migratory birds and other species are delivering ticks farther afield. Once they’re arrived, ticks don’t tend to travel far on their own, but females can lay several thousand ticks at a time. The newly hatched ticks hitch rides on animals who transport the tiny arachnids far and wide.
As surveillance improves and word about Lyme disease spreads, McInnis says, her inbox is overflowing with so many questions she can barely keep up.
“There are lots of different types of ticks found in the Rocky Mountains, some of which carry Lyme,” McInnis says.
A decade ago, people never spoke of Lyme disease anywhere in Canada. When patients like herself and Hutchison sought answers, Lyme disease wasn’t even considered a possibility by doctors. Predominant attitudes are changing, even in Alberta where in early 2014, the Alberta Health Service acknowledged a risk of Lyme disease in the province. In spite of the gains, word about the illness still appears slow to reach health professionals in Alberta.
“Many of LDAA’s members report their physicians advise there is ‘No ticks and no Lyme here,'” McInnis says.
Alan Bibby, a filmmaker based in British Columbia’s Gulf Islands, began work on a documentary about the illness in 2012, after coming face-to-face with the familiar hurdles of diagnosis and treatment for a close family member, who continues to live with the illness.
Bibby immediately met conflicting studies, desperate patients and reams of dodgy science. Some of the biggest problems are the lack of any gold-standard testing to diagnose the disease and no general agreement on treatment for longer-term infections. The uncertainty has led to significant discord among many Lyme disease advocates and medical professionals.
In a decades-long career that’s led him around the world, Bibby says no other story compares to his experience with Lyme.
“It soon became evident that it’s a more important project than any I’ve been involved with in my career,” he said.
Given that Lyme disease has been reported in growing numbers across Canada, including throughout the Bow Valley, Bibby chooses to err on the side of caution. An avid hiker, search and rescue volunteer and photographer, Bibby rarely steps out without long sleeves and long pants. Sandals are definitely out, light clothing is preferred and every outing is followed by a thorough tick check.
“Lyme disease is the most commonly reported vector-born disease in the U.S. And there are no controls at the border,” he adds.
Anyone who finds a tick on themselves should remove it by using narrow-nosed tweezers to grab the specimen as close to the skin as possible. Pull straight out to remove. Never suffocate, squeeze or burn the body as this can highly increase the risk of infection. Ticks should be collected and submitted for testing by following up with CanLyme or the LDAA.
All suspected tick bites warrant basic preventative treatment with antibiotics. Since fewer than 50 per cent of potential Lyme disease cases are not accompanied by a telltale bull’s-eye rash and many people never notice they’ve been bitten, anyone who spends any amount of time outdoors should pay close attention to flu-like symptoms, headaches, dizziness, blurred vision or sudden fatigue. Symptoms can set in immediate after exposure or take several months to manifest. Signs of Lyme should be treated quickly with a thorough and sustained dose of antibiotics.
“Early intervention is key,” Bibby says. “Get it early, and don’t take ‘no’ from your doctor if he or she dismisses your concern.”
The illness’ sufferers had cause to celebrate across Canada in late 2014 as a private members bill presented in Ottawa by Green Party MP Elizabeth May received unanimous support from parliamentarians, a rare coup in the current political climate.
“I look forward to working with all relevant interest groups and government… for the national conference to develop the federal framework to deal with this dreadful illness,” May said soon after the bill received approval.
The Lyme Disease Act leads the way for a gathering of provincial leaders, medical experts and patient group representatives to create a strategy to prevent, detect and treat Lyme disease. The program will finally offer a forum for people on all sides of the debate a chance to convene and discuss a common path forward.
It’s a step that people on all sides of the discussion about Lyme disease hope will provide some clarity and a ray of hope to the thousands of people who suffer from the disease and countless more who are at risk.
“We want to see people who are chronically ill treated, but there are a lot of things that need to change to make that happen,” McInnis says about the upcoming Lyme conference. “It’s wonderful; it’s a step that is very hopeful.”
CanLyme was formed to give the public, including medical professionals, balanced and validated information on Lyme disease and related co-infections.
Lyme Disease Association of Alberta offers local insight about the illness within the province.
Sean McIntyre is a journalist based on Salt Spring Island, B.C. He spends much of his spare time in the Coast Range, often trying to catch a longing glimpse of the Rocky Mountains.