‘Be vigilant’: Patients want Canadians to know about lesser-known tick-borne diseases

Raffaella Harris developed intense fatigue and joint pain while living in Windsor, Ont. in May, 2018. At the time, a tick-borne disease was the last thing she suspected – let alone one not typically found in Ontario.

But even as she searched for answers with her doctor, a bacteria called Rickettsia rickettsii was replicating within her body, introduced through a tick bite she hadn’t even noticed. Within days of the initial onset of her symptoms, Harris was hobbled by pain.

“By the fourth or fifth day, it was so intense I knew something was wrong,” she told CTVNews.ca in a telephone interview on Tuesday. “My head was pounding, and my body was shaking so badly.”

New research out of McGill University and the University of Ottawa has found tick-borne pathogens such as Rickettsia rickettsii and Babesia odocoilei are spreading beyond their usual range and into Central Canada, thanks, in part to climate change.

That study, entitled “Emerging Tick-Borne Pathogens in Central Canada: Recent Detections of Babesia odocoilei and Rickettsia rickettsii,” was published in the medical journal Vector-Borne and Zoonotic Diseases on Nov. 9.

Babesia odocoilei is a microscopic parasite that causes babesiosis, a disease similar to malaria. Rickettsia ricketsii causes Rocky Mountain spotted fever, which can be fatal if left untreated.

Unlike Lyme disease, the report states, neither pathogen is listed as a nationally notifiable disease in Canada. According to the Government of Canada, nationally notifiable diseases are those which have been identified by the federal, provincial and territorial governments as priorities for monitoring and control.

While most Canadians know about Lyme disease, some, like Harris, are becoming familiar with these less common, non-nationally notifiable diseases.

As her illness progressed to include liver damage, hyperthyroidism and acute thyrotoxicosis, Harris’s doctor ruled out tumors, tularemia, Legionnaires’ disease and toxic mold exposure. He had previously trained and practised in the U.S., where he had opportunities to study pathogens like Rickettsia rickettsii.

He pre-emptively started Harris on a course of the antibiotic doxycycline, which is used to fight certain tick-borne infections, and sent a sample of her blood to a lab in Winnipeg to be tested for some of the pathogens ticks are known to carry. The lab results came back positive for Rickettsia rickettsii.

It took nearly a year for her thyroid and liver function to return to normal, but Harris recovered completely, thanks to her doctor’s decision to prescribe doxycycline when he did.

“I’m very fortunate to have had a doctor who really took the time to investigate,” she said.

She still doesn’t know where she was exposed to the tick that made her sick. She wonders if it happened during a 15-minute walk along an urban park path in Windsor on a chilly day early that May, or in her own backyard garden.

She lives in another city now, London, Ont., and she’ll never know for sure.

According to Dr. Yoav Keynan, the tick that infected Harris would have been far from its usual range.

Dr. Keynan is the scientific director of the National Collaborating Centre for Infectious Diseases and head of the University of Manitoba’s Section of Infectious Diseases.

He said ticks carrying Rocky Mountain spotted fever are typically found in Saskatchewan, Alberta and B.C., but that it’s possible their range is creeping eastward, as the November study suggests.

Brenda Rappos (left) and Raffaella Harris want Canadians to know about lesser-known tick-borne diseases like babesiosis and Rocky Mountain spotted fever. Rappos suffered from babesiosis throughout 2021 and 2022, while Harris was diagnosed with Rocky Mountain spotted fever in 2018. Researchers say ticks that carry both diseases are expanding their range in Canada. (Brenda Rappos and Raffaella Harris)

“The areas where you can contract tick-borne illness are changing, based on changes in our climate and in development and land usage,” he told CTVNews.ca in a telephone interview on Wednesday. “So the opportunities to encounter ticks are changing.”

Keynan said the federal and provincial governments are already using modelling techniques to better understand how disease vectors like ticks are expanding their range within Canada. However, like the authors of the November study, he said pathogens like Rickettsia rickettsii and Babesia odocoilei bear closer monitoring.

“There’s an expanding range of ticks, and we need to continue to be vigilant and to study what these ticks carry to anticipate what could be the veterinary and human consequences,” he said.

Brenda Rappos wishes Canada’s list of nationally notifiable diseases had included Babesia odocoilei in 2021 when she was struggling to solve her own medical mystery.

Rappos tested negative for four different strains of Lyme disease after receiving a tick bite in October that year. She’d found the tick embedded in her thigh after a walk in Bob Hunter Park, in Scarborough, Ont., and took it to the emergency room at Centenary hospital to show doctors. She was pre-emptively prescribed an antibiotic and sent home, where she stored the tick in her fridge.

Within weeks, she developed a fever, cold sweats and joint pain. As her health continued to deteriorate throughout the fall, winter and spring, her doctor searched for answers but found none. She underwent dozens of X-rays, CT scans and MRIs to rule out arthritis, autoimmune disorders and other potential causes of her illness.

“It was a nightmare, and I was trying to explain it to the doctor, but these are symptoms you don’t really see,” she told CTVNews.ca during a telephone interview on Monday. “You know, it’s not like a big sore on your face.”

Rappos retired from her job in February this year, 10 months earlier than she planned. She was too sick to work. A marathon runner before the tick bite, she now had to take two Advil each morning and night just to get through the day.

A lab document from Geneticks Canada shows the tick Brenda Rappos sent to the company for testing was carrying Babesia odocoilei. (Brenda Rappos)

By October 2022, she was no closer to knowing what was making her so sick.

“In October, it’s been a year and I’m not getting better, I’m getting worse,” she said. “I can hardly move. My joints are aching. My elbow, my fingers – and so on – are killing me.”

Rappos took the tick from her fridge and mailed it to Geneticks Canada, a private laboratory that tests ticks for a wide range of pathogens for which hospitals in Canada might not test. The test came back positive for Babesia odocoilei. After a year suffering from untreated babesiosis, she was prescribed a combination of antibiotics and quinine, which is used to treat malaria.

“Today I would say I’m probably 65 per cent better,” she said.

Rappos is relieved to have an answer, but she worries about Canadians who can’t afford to pay for private testing, or who don’t realize they’ve been bitten by a tick in the first place. She hopes stories like hers will raise public awareness of lesser-known tick-borne pathogens like Babesiosis odocoilei, and the risk of contracting them.

“We have a great medical system that can fix everything, but now looking at this makes me sad,” she said. “It makes me sad that we know (these diseases) exist, and we’re not supporting somebody to figure out how to get them identified.”