Lyme disease on the rise in Canada, but doctors still confused about diagnosis

In 2015, there were more than 700 cases of Lyme disease reported to the Public Health Agency of Canada, up from roughly 130 in 2009.

Ontario mom spent 3 months seeking diagnosis for daughter's array of symptoms

After Samantha Simon's nearly two-year-old daughter Emily developed a bull's-eye rash from a bug bite, Simon suspected Lyme disease. It took months to get an answer. (Samantha Simon/CBC News)

When her daughter got a bug bite in early June, Samantha Simon never expected the next three months would be spent in hospitals and clinics, trying to find out why her toddler was increasingly ill with an array of symptoms: Fever. Vomiting. Headaches. Joint pain. Diarrhea. 

Eventually, two-year-old Emily was diagnosed with Lyme disease and is now on an antibiotic regimen to kick the potentially-debilitating illness.

But Simon said it took visiting multiple clinicians to get answers — a frustrating situation stemming from a lack of diagnostic tools and clinician confusion, which could soon be a reality for more and more Canadians as the tick-borne disease spreads farther north in the years ahead.

On June 8, Emily's bite looked like a regular mosquito bite, said Simon, who lives in Durham, Ont., a community about 170 kilometres northwest of Toronto.

The bite soon turned into a bulls-eye shape — which can be a marker of Lyme disease — coinciding with a high fever and a rash over Emily's whole body. Eventually, the toddler began suffering from headaches, vomiting and diarrhea, her mom said.

Suspecting Lyme disease as the culprit, Simon brought her daughter to the family's regular physician, emergency room physicians and a nurse practitioner in the months that followed in hopes of getting answers. Some told her it could be a virus, or an allergy to a bug bite.

Later, a clinician from Owen Sound Public Health said it was clear Emily was suffering from Lyme disease. Seeking answers, Simon travelled to B.C. to consult a Lyme specialist, who confirmed the diagnosis.

By that point, Emily had been sick for most of the summer.

Samantha Simon with her family. Her young daughter, Emily, is still recovering from Lyme disease. (Submitted by Samantha Simon)

'Something needs to change'

"Something needs to change and something needs to be done, because this problem is only getting worse," said Simon. "Lyme is unfortunately on the rise, and our health care system needs to have a better plan of action for how we're treating and how we're diagnosing."

Medical experts agree that Lyme disease, which is caused by Borrelia burgdorferi bacteria and spread through the bite of infected ticks, is becoming more common in Canada. 

In 2015, there were more than 700 cases of Lyme disease reported to the Public Health Agency of Canada, up from roughly 130 in 2009.

And it's not just in remote areas. On Friday, Toronto Public Health (TPH) officials said Toronto has seen an increase in the number of cases of Lyme disease acquired in the city's Rouge Valley area this year.

Toronto's associate medical officer of health, Dr. Christine Navarro, said 24 cases of Lyme disease have been reported to TPH so far this year, including eight that were from local exposure to ticks. That's up from 23 cases for all of 2016.

"We are seeing an increased number of ticks through our tick surveillance," Navarro added.

Once you start seeing ticks persisting in a new habitat, you'll soon start to see more of them carrying Lyme disease, said infectious disease expert Tara Moriarty, an associate professor in the faculties of dentistry and medicine at the University of Toronto.

This is a male I. scapularis, much smaller in comparison to the females. In 2015, there were more than 700 cases of Lyme disease reported to the Public Health Agency of Canada. In 2009, there were 128 cases.

Could affect 80 per cent of eastern, central Canada

Partly thanks to climate change, it's expected that 80 per cent of the Canadian population in eastern and central Canada will be living in the habitat of potentially-infected ticks, she added.

But that doesn't mean the medical community has kept pace with the level of risk.

"Physicians are confused, still, about how they should be diagnosing it," Moriarty said.

If someone has had a tick bite, doctors should administer a protective dose of antibiotics, she said. "That information is not quite getting out there … we need to improve early measures on the part of physicians."

Earlier this year, Dr. Gregory Taylor, the country's then-chief public health officer, acknowledged that clinicians in Canada are divided on how to interpret the blood test for Lyme disease — and how to treat it.

The early-stage diagnostic techniques are also lagging behind, with no rapid testing available, Moriarty said.

That combination can lead to frustration for patients and caregivers like Simon, who said it's important to advocate for yourself by providing Lyme disease information to clinicians who may not be familiar with the growing risk.

"Patients who suspect that they have Lyme disease, and who know that they've been bitten by a tick, should be able to go to their doctor and request — within 72 hours of the bite — a dose of antibiotics," added Moriarty.

When ticks establish new habitats, soon more of them will carry Lyme disease, says infectious disease expert Tara Moriarty, an associate professor in the faculties of dentistry and medicine at the University of Toronto.

$4M in federal research funding

Local public health agencies are working hard to distribute information about Lyme to both physicians and the public, she noted.

And the federal government has also stepped in, announcing $4 million in research funding earlier this year, coupled with a national medical surveillance program. The program will use data collected by the Public Health Agency of Canada to track incidence rates and the economic costs of Lyme disease, and establish guidelines for best practices throughout Canada.

Simon welcomes any positive changes, but is still frustrated by the summer of pain and suffering her young daughter has faced.

"Our faith in our medical system has been completely shattered," she said.

With files from CBC News