The need for improved Lyme literacy

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As Lyme disease makes inroads across Canada, activists say the medical community needs to better informed

By Diana Swift

It may be September, but that doesn’t mean you can’t still contract a summer infection that’s quickly gaining ground in Canada: Lyme disease. As more Canadians and their pets take to campgrounds and hiking trails, invading the habitats of blacklegged ticks spreading north and west with the warming climate, cases of this potentially serious disease are rising incrementally.

Lyme disease is caused by the spirochete bacterium Borrelia burgdorferi typically carried by about 20 per cent of blacklegged ticks (Ixodes scapularis), that feed off the blood of animal and human hosts and hide in leaf debris and long grass. “The nymphs are particularly active feeders,” says medical entomologist Dr. Robbin Lindsay, a research scientist at the Public Health Agency of Canada’s National Microbiology Laboratory in Winnipeg.

Lindsay warns that the geographic distribution of blacklegged ticks in Canada has rapidly expanded and is not likely to decline any time soon. More ticks are likely entering Canada on migratory birds, and a warmer climate likely plays a role. “Studies suggest that temperature is one of the critical factors that determines where and how quickly tick populations can establish.” says Dr. Lindsay. “Tick populations take hold more rapidly in warmer areas.”

The tick explosion is driving Lyme incidence – and Lyme phobia. Back in 1994, 144 Lyme cases were reported in Canada, according to federal government surveillance figures.

Thanks partly to greater awareness and Lyme’s designation as a nationally notifiable disease in 2009, by the year 2016 Canadian cases had increased to 994, almost 90 per cent from Ontario, Quebec and Nova Scotia, for an incidence of 2.7 cases per 100,000 population. A year later, cases jumped by almost 50 per cent to 1479, and last year, a troubling 2025 cases made the books.

“In 2018 the incidence of Lyme is projected to double and rise to about 10 cases per 100,000 of population,” says microbiologist/biochemist Dr. Tara Moriarty, an associate professor in the University of Toronto’s Faculty of Dentistry and Medicine. “But globally, only about 10 per cent of infected people will get serious, hard-to-treat forms of the disease.”  She adds that some cases are missed because primary care physicians may not have encountered many cases.

Although Canada’s annual incidence of Lyme is small compared with, say, influenza (55,000+ as of June for the 2017-18 season), it is much larger than that of mosquito-borne West Nile virus, of which 200 cases were reported in 2017.

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As cases increase, so does polarization around the issue. “Lyme has become highly politicized,” says Dr. Isaac Bogoch, an infectious diseases specialist at Toronto General Hospital. “The rapid expansion of cases reported in the media is driving concern,” says Moriarty, adding that 90 per cent of cases are readily treated.

Lyme pressure groups, however, stress the lack of awareness among clinicians, delays in treatment, a paucity of diagnostic tools and general confusion over the interpretation of Lyme blood tests, putting growing numbers at risk of delayed treatment and serious chronic symptoms. Although the Internet abounds with troubling examples of patients who did not receive timely treatment and suffered long-term consequences, there is still some controversy as to whether a true chronic form of the illness exists.

No one would argue that early diagnosis and therapy aren’t important since without appropriate antibiotic treatment the infection can in some cases lead to long-term problems, including facial paralysis, chronic fatigue, cardiac disturbances and neurological deficits. These can set in long after the initial symptoms of fever, rash, headaches, arthralgias, nausea and general flu-like chills and aches. A case in point is that of Emily Simon (see sidebar: “A Worst-Case Scenario’), who was sick for months before her rashes, severe joint pain and flu-like symptoms were treated belatedly as Lyme disease. And studies reveal that only 40-80 per cent of patients will exhibit the telltale bull’s-eye rash, the spreading, ring-like lesion caused by the tick’s bite and known as erythema migrans and often mistaken for a spider bite.

According to Bogoch, Canadian healthcare providers are increasingly aware of the Lyme issue and are committed to providing better care. “Some doctors choose to treat Lyme empirically right away based on a patient’s symptoms and the context – where they were before the symptoms started – and others will wait a few days for the blood tests to come back positive.” Either way, he says, there are well-documented guidelines for treating all phases of the disease, which is not difficult to diagnose or treat. “It’s actually a rather wimpy bacterium, although residual symptoms can be challenging to manage,” he adds.

 

Lyme activists note, however, that cats and dogs are better protected than people, having access to vaccination that is no longer an option for humans. “There was an early vaccine that was 80 per cent effective, but it required multiple doses and was discontinued after unsubstantiated reports that it caused Lyme disease,” says Moriarty. A newer version, VLA15, developed by the French biotech company Valneva, has just finished phase II trials in Europe, and may be on the market in the not too distant future

Other experts caution that the hyperbole around Lyme disease poses a risk of unnecessary long-term exposure to antibiotics and their inherent side effects as well as the spectre of antibiotic resistance exacerbation and the emergence of intractable superbugs.

“If they don’t have Lyme disease, but they have symptoms for which they are receiving ‘Chronic Lyme’ antibiotics, they’re at risk of side effects from unnecessary antibiotics,” says Dr Lynora Saxinger, an associate professor of infectious diseases at the University of Alberta in Edmonton. “And they’re also at risk of whatever they actually have becoming more of a problem while they’re distracted by this question of Lyme treatment.”

While Dr Saxinger acknowledges that Lyme is becoming more common and can have serious consequences if not treated, she cautions that “there’s unfounded distrust of validated tests and unfounded trust in terrible tests, and strange beliefs about chronic infection.” And, she continues, “Even when patients with well-established true Lyme disease have long-term symptoms after infection, long-term and repeated antibiotic treatment have not been shown to improve these troublesome post-infection symptoms and are not recommended.”

Moriarty agrees that some activists downplay scientific evidence and promote unproven experimental diagnostics and treatments. And, increasingly, profit-driven companies are exploiting the fear around Lyme. “There’s a lot of inaccurate information and heavy marketing around methods for prevention and diagnosis that have not been validated,” says Moriarty. “Some sick people are told they have Lyme when they don’t.” She refers, for example, to a recent study that had asymptomatic people without Lyme disease tested with an unvalidated alternative assay. “More than 50 per cent tested positive!” she says.

All the more reason, say activists, for mainstream medicine and public health to step up their game. And citizen advocacy for more awareness and prompter diagnosis and treatment is on the rise with the formation of vocal groups such as the Canadian Lyme Disease Foundation and LymeHope.

For its part, the federal government is taking the encroachment of Lyme disease into Canada very seriously and is committed to raising public and professional awareness and improving prevention, diagnosis and treatment. The Public Health Agency of Canada’s website urges all healthcare providers to update their knowledge of this infection and its potential consequences and provides links to the guidelines of the Infectious Diseases Society of America and the International Lyme and Associated Diseases Society.

But according to international Lyme disease expert Dr Raphael Stricker of San Francisco, pockets of the medical community are still far from Lyme-literate and there’s lingering resistance to taking the infection seriously. “The medical community is not open-minded about accepting newer, more sophisticated tests and some members feel there’s no need for treatment a lot of the time. This is blocking progress in Lyme disease.”

Diana Swift is a freelance writer in Toronto.

 

Photo of Rob, Samantha and Emily Simon courtesy of Samantha Simon Photography.

A Worst-Case Scenario

Samantha Simon, a photographer who resides on a rural property in Durham, Ont., near Own Sound, is one of a growing number of Canadians who believes much more needs to be done to address the Lyme disease threat. In 2017, her then 20-month-old daughter, Emily, was bitten by ticks during a family hike on their wooded trails. The toddler eventually developed three characteristic bull’s-eye lesions – first on her arm and then on her leg and foot. She also had fever, vomiting, and joint pain. “Emily became completely lethargic and would cry and grab at her knees and try to bite them,” recalls Simon.

Suspecting Lyme, Simon took her daughter to the local emergency room, where the initial lesion was dismissed as an allergic reaction to a mosquito bite. Simon’s belief that Lyme disease was causing Emily’s symptoms was equally waved off by her family doctor and even by Toronto’s Hospital for Sick Children.

Although a local nurse practitioner prescribed a brief course of antibiotics, it took an appeal to the advocacy group Lyme Ontario to put Simon in touch with a naturopath, who definitely diagnosed Emily with the tick-borne infection. But in order to receive further antibiotics, the family had to seek care in British Columbia, where naturopaths are able to prescribe antimicrobial drugs.

Emily’s symptoms improved with treatment, but she remained on antibiotics for five months and now, more than a year later, she has lingering neurological symptoms related to Lyme. “The infection caused a brain inflammation and today she’s very volatile and flies into rages,” says Simon.

Now on the board of the advocacy group Lyme Ontario, Simon is fighting for better recognition of and prompt treatment for all tick bites, since, she notes, these vectors can transmit several other infections as well. “Ticks are filthy creatures,” she says.