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Quebecers who show symptoms of Lyme disease continue to navigate the health-care system unsupported. Fewer than half of the specialty clinics they were promised are currently providing services leaving many without care, according to the association advocating for them.
Caused by the bites of blacklegged ticks contaminated with the bacterium Borrelia burgdorferi, Lyme disease has been on the rise in Quebec for several years. More than 1,300 cases have been confirmed in the province since 2021.
Health Minister Christian Dubé announced last year that 15 clinics for people suffering from long-term COVID and Lyme disease would open.
Planned over three years, the $20.5 million pilot project aims to build knowledge and offer a better care pathway for people with those diseases, which require more complex care.
While 14 clinics so far offer help for people with long-term COVID, just six of them also provide services related to Lyme disease, according to information obtained from the Health Ministry.
Services are currently provided in the Bas-St-Laurent, Lanaudière, the Eastern Townships, Montreal and Quebec, said a spokesperson for the ministry.
This fall, patients will be able to seek care in Saguenay-Lac-Saint-Jean and Chaudière-Appalaches. Steps are also being taken to serve patients in Outaouais and Montérégie-Ouest — two at-risk regions for contracting Lyme disease.
No guidelines for care, says advocate
Among those infected, the optimism instilled by Dubé’s announcement in May 2022 has faded in recent months.
“So far, we aren’t seeing any results for these clinics,” said Caren Leblanc, executive director of the Quebec Lyme Disease Association. “There are still no guidelines from the ministry on the type of patient we take care of and the type of treatment we give.”
For Leblanc, even if the government had good intentions, the lack of medical consensus surrounding the disease continues to undermine its efforts.
“Lyme disease is complex, and it’s difficult to find consensus among experts,” she said in an interview with Radio-Canada.
Since 2021, the Quebec government has recognized the limits of blood tests to detect the disease and recommends more clinical diagnosis.
But many doctors still aren’t comfortable diagnosing it, considering the multitude of symptoms associated with Lyme disease in its persistent form.
“It is a disease for which we lack data,” Leblanc said. “We are a bit like a hot potato, we go from one doctor to another, and it is difficult to take care of.”
She says the quality of care is inconsistent, even in specialized clinics.
“There are doctors less skilled or less knowledgeable about Lyme disease who decide not to treat it or to treat it minimally,” she said.
Sidelined by COVID-19
The Quebec pilot project intended for clinics to offer care for both long COVID and Lyme disease, with a committee of experts meeting and overseeing the work associated with the two infections.
But according to Leblanc, committee discussions on long COVID overpower those on Lyme disease, which affects more people.
In her opinion, offering Lyme disease-specific services would have been more beneficial.
In addition to clinics opening, the pilot project includes CHUM-directed research on long COVID and Lyme disease.
Since the committee’s work started recently, details on the research are not yet available, the Health Ministry says.
Lyme disease is considered endemic for the regions of the Eastern Townships, Lanaudière, Mauricie-Centre-du-Québec, Montérégie, Montreal, Outaouais, Laval and the Laurentians.
The milder climate could help ticks survive and develop more easily, according to the Health Ministry.
Besides antibiotic treatments, research for a Lyme disease vaccine is currently underway.
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