Notes from the front line: Family doctors speak out about the challenges of Lyme disease

Dr. Derek DeSa sits in one of his exam rooms on a quiet Friday afternoon before the Canada Day long weekend and recounts a moment the growing Lyme disease epidemic hit close to home.

He says a worker at his childrens’ daycare found a blacklegged tick — one of two species in Canada known to carry the bacteria that cause Lyme disease — in the kids’ playground.

“It was kind of a reality check and a wake-up call … It’s definitely eye opening,” the Toronto family practice physician recalls.

We tend to think blacklegged ticks thrive only in thick forest and tall grass in rural areas. But there’s nothing rural about DeSa’s kids’ daycare or his busy family practice not far away in the city’s Riverside neighbourhood. In fact, they’re both located just a few minutes’ drive east of the curtain of skyscrapers towering over the financial district.

“It helps me as a physician and a parent to realize that our guard has to be up,” he says. “We have to be diligent and looking and checking our kids and being mindful.”

DeSa says with each passing year, the Toronto region is getting more and more like the community where he did his three-year family practice residency: Edison, New Jersey — which is right in the middle of the most highly concentrated Lyme disease hot zone in the world. He says he can see a marked increase since he began practising family medicine in Toronto back in 2014.

“More incidence of exposures to ticks. More bites, for sure. Before you wouldn’t see that many of these exposures or chronic Lyme, but it’s definitely going up.” 

What DeSa is seeing in his practice is borne out on a national scale. Climate change has been fueling the spread of ticks northward over the past several decades. They’ve gained a foothold in the Maritimes and in southern regions of Quebec, Ontario, Manitoba and British Columbia. And cases of Lyme disease — now the most common vector-borne illness in Canada — are rising sharply and expected to continue doing so. 

In fact, some researchers estimate case counts are at least 10 times higher than the reported figures. And many patients are encountering the infected ticks in urban areas like Greater Toronto — which provides the perfect habitat for these pests in its four river valleys and its network of heavily wooded ravines. 

But DeSa says patients are now getting bitten by ticks even in downtown Toronto parks with no connection to the city’s ravine system.

”You would never think, ‘I’m going to take my kid to the park to jump in the splash pad and run around in the grass,’ and they come home with a tick on them. But they’re there.”

DeSa says on top of the exploding numbers, Lyme disease presents a lot of challenges to Canadian primary care physicians, many of whom don’t know enough about the condition to diagnose and treat it.

He also says the standard test used in Canada doesn’t detect the bacteria, but the antibodies the immune system produces to fight it. It can be weeks before they show up. 

”It takes time for our immune system to generate antibodies … and it’s also not a perfect test …We have to be mindful of false positives and false negatives on testing results,” he says. 

“It’s also tricky because … early Lyme — the fatigue, the joint pain, the headaches and flu-like symptoms — can be confused for other diagnoses … We’re not always alert or aware of what this could be.”

When doctors become patients 

Some Canadian doctors have had firsthand experience with Lyme disease — not only as health professionals but also as patients. Dr. Debbie Martin, a retired emergency room physician who lives in Orillia, Ontario, about a two-hour drive northeast of Toronto, treats tick-bite patients virtually as part of a collaboration with Geneticks, a private laboratory based in Uxbridge, Ontario that tests ticks for the presence of the pathogens that cause Lyme disease and other illnesses. Martin describes Geneticks as “a fabulous service” that can inform you if the tick that’s bitten you is infected or not.

Lyme disease was only one of the many possibilities doctors considered when Martin was hospitalized with myocarditis — a condition that causes inflammation of the heart muscle — severe headache, neck pain and drenching sweats in 2022. 

“It was frightening because I was hospitalized, very ill, the cause was uncertain, and frankly the physicians were not being thorough … No one had done a complete physical exam.”

She was in the hospital for a week and on her first day home, she spotted the large telltale erythema migrans rash. After that, with the help of an old friend and colleague, Dr. Tim Cook, Martin realized that she not only had contracted Lyme, but also babesiosis -– another tick-borne illness which she had never heard of.

Cook, a Toronto specialist in internal medicine and infectious disease, “probably knows more about Lyme and tick-borne illness than anyone I’ve ever met,” she says.

”I got better. But it took two years … I’m not sure that I am fully recovered.” 

IDSA vs. ILADS

The treatment of Lyme has become political and is tied to U.S. insurance company rules, Martin says. 

She says Lyme disease patients aren’t getting the initial treatment that is required in Canada, partly due to the dispute over treatment protocols between the International Lyme and Associated Diseases Society (ILADS) and the Infectious Disease Society of America (IDSA).

The IDSA protocols are the accepted standard across Canada. But along with many patients, health professionals and researchers in the Lyme community, Martin believes the insurance industry is partly to blame for the stubborn resistance to the ILADS protocols, which include more expensive diagnostic testing and longer courses of antibiotics, because of their higher cost.

“Lyme is expensive and can be chronic, particularly if it is not treated aggressively at diagnosis. And if it exists, it’s going to cost somebody a lot of money.”

Martin says doctors in Canada who treat patients with tick-borne diseases according to the more aggressive ILADS protocols are being “actively persecuted.” 

The College of Physicians adamantly agrees with the IDSA protocols. As a result, they believe that any physician who follows ILADS is over treating, and some physicians have had their licenses threatened or revoked as a result. 

IDSA recommends a single preventative dose of the antibiotic doxycycline within 72 hours of a high-risk tick bite. For confirmed Lyme disease, particularly early localized disease ( the erythema migrans rash), the society recommends a 10-day course of doxycycline. 

Access to care is a problem 

But Martin tells her patients in her judgment ILADS is the way to go.

”I believe that if you’re bitten by an infected tick you should be on 20 days of antibiotics, and I will give them to you,” Martin says. If patients are symptomatic, Martin says she prescribes an eight-week course of antibiotics.

“Last year from October 15th to  December 31st, I saw 41 patients who had a positive tick bite (from Geneticks) 11 of them became ill – eight from Lyme and three from babesia,” she says. 

“As far as I know, they are all feeling better now, possibly because they got the right course of antibiotics early in the disease. This is the only reason that I am working as a physician at this time — to ensure that fewer people suffer as I did with full blown Lyme and babesia.”

ILADS and IDSA also disagree on the nature of chronic Lyme, also referred to as long Lyme — although a new report  from the U.S. National Academies of Sciences, Engineering and Medicine recognizes chronic Lyme and is pushing for a new name that it considers more accurate and less politically divisive: Lyme Infection-Associated Chronic Illnesses (IACI). 

IDSA disputes the ILADS assertion that the condition is the result of ongoing infection. Although IDSA does recognize that Lyme symptoms can persist in some patients well beyond the initial acute infection, it says there is no evidence that prolonged or repeated courses of antibiotics are beneficial.

DeSa, for his part, acknowledges the possibility critics raise that there can be a danger of overtreatment, especially given the risk of antibiotic resistance. But he also says some of the IDSA protocols might be out of date and the way Canadian physicians treat Lyme disease needs to evolve.

”Medicine changes slowly in some regards,” he says.

“I think the more we see as clinicians the more it will hopefully bring attention to the problem and help us to manage this disease more efficiently and effectively.”

But DeSa says a “larger, societal health-care problem” is also fueling chronic Lyme: the acute shortage of family doctors affecting more than six million Canadians. That’s because sufferers don’t get the care they need in the early stages of the infection. 

“Access is a problem,” he says.

“You end up going to an emergency room with chronic Lyme symptoms and end up getting told, ‘No, this is not an emergency,’” he continues. 

“Improving access to primary care is huge because then we can get testing and look at treatment options and referrals if needed.”