As tick season hits, Lyme disease patients say they need better care

Lyme disease patients in Montreal say they can't get the treatment they need here and are turning to one doctor in Calgary and doctors in the U.S.

'Canada is not coming through for us,' says 66-year old Montrealer who is considering treatment in the U.S.

Emily Rill, Arlene's only child, juggles two jobs while helping her mother cope with Lyme disease. 'It's tough mentally. It's tough physically on me.' (Shari Okeke/CBC)

When Arlene Rill was bitten by a tick in Montreal three years ago, she knew nothing about Lyme disease.

She had no idea she would become so ill, and she never imagined enduring the kind of pain she's been living with ever since.

"I live with huge stomach issues, terrible [headaches], pain in my ears, ringing in my ears, inflammation in my joints," said Rill, a 66-year-old retired teacher.

"My legs are in pain. My knees are in pain. Sometimes my feet are killing me."

Rill says she blames her suffering on a lack of knowledge about Lyme disease in Canada and a lack of willingness to treat long-term sufferers.

According to Montreal's public health department, cases of Lyme disease in Quebec jumped to 180 in 2016 from just 32 five years earlier. In the vast majority of those recent cases, the disease was acquired within the province.

Lyme disease advocates insist those numbers would be dramatically higher if diagnosis methods were improved. 

Shortly after being bitten, Rill said she visited an infectious disease doctor in the city who told her there is no Lyme in Montreal. She tested negative at that time.

After six months of debilitating symptoms, she says, she consulted another infectious disease doctor who was convinced she had Lyme disease.

Rill says she was prescribed antibiotics for six weeks, which helped, but once that treatment stopped, symptoms returned.

She says she needs more antibiotics, but most Canadian doctors won't prescribe a longer stretch of antibiotics to Lyme disease patients.

Arlene Rill, right, says she's had Lyme disease since 2014 and is now in so much pain she's dependent on her 26-year-old daughter. 'Without Emily, I wouldn't be here.' (Shari Okeke/CBC)

Doctors refuse to prescribe

"Doctors refuse to prescribe for more than two to four weeks because the available standard medical evidence suggests harm, and no benefit to extended treatment," said Dr. Michael Libman, infectious disease specialist and director of tropical medicine centre at the McGill University Health Centre.

Libman also has concerns about laboratories in the U.S. where many Canadians, including Rill, have sent their blood to be tested. He says too often those tests produce false positive results.

"A lot of people who … carry a diagnosis of Lyme disease and are getting treated for [it], do not have Lyme disease by standard scientific medical criteria," he said. "This is the source of the problem." 

Rill says the U.S. laboratory that tested her blood concluded she has Lyme disease and she is well aware of skepticism from medical doctors in Montreal.

"A lot of doctors will call you crazy," she said.

Turning to the U.S.

Rill's difficulties sound familiar to another Montrealer, whose identity CBC agreed to withhold in order to protect his access to the medication he depends on.

Trevor was bitten by a tick while working in Ontario in 2012. Like Rill, he didn't think much of it at and knew little about Lyme disease at the time.

He too tested negative for Lyme disease early on.

A tick bite may leave a bullseye-shaped rash on the skin. (CBC)

After living with debilitating symptoms for about two years, being unable to work or get out of bed and seeing several doctors who ruled out heart failure, lupus and multiple sclerosis, Trevor returned to Montreal to live with family members who helped care for him.

Trevor then turned to his childhood family doctor, who suspected he had Lyme disease.

After a three-month run of antibiotics, Trevor improved but his family doctor said he could not prescribe more medication without risking disciplinary action.

Re-writing U.S. prescriptions

Trevor then tracked down a Lyme specialist in the U.S. who sees him every three months and put him on antibiotics for about two years.

Unable to afford the thousands of dollars it costs to fill those U.S. prescriptions, Trevor found a Canadian doctor who was willing to rewrite them.

It's an underground route some Canadians are taking to access antibiotics for Lyme disease.

Now, nearly five years after being bitten, Trevor has returned to work part-time and is slowly regaining his strength and his life.

Trevor says the Canadian guidelines that restrict doctors from prescribing more than four weeks of antibiotics to Lyme patients do not make sense.

"I wish [Canadian] doctors were allowed to just treat the patients without fear of losing their licence," he said.

Alternative approach

At least one Canadian doctor says he is prescribing longer runs of antibiotics to Lyme patients and is not afraid of jeopardizing his practice.

"The treatment protocols that are being employed [in Canada] are regrettably too short and the diagnostic criteria that are being applied are regrettably too narrow," said Dr. Ralph Hawkins, clinical associate professor at University of Calgary and a physician at Calgary's South Health Campus hospital.

As a result, he said "there are substantial number of patients who either don't get a diagnosis or don't get appropriate treatment."

Hawkins recently accompanied a Lyme advocacy group, Ticking Lyme Moms, to Ottawa. The group is pressuring the federal government to improve diagnosis and treatment of Lyme disease. 

Hawkins, who has been treating Lyme patients since 2012, says longer stretches of antibiotics are showing positive results.

'Too much pain'

"The treatment protocols that I employ and the protocols that are used are all published in the literature," Hawkins said.

"It is an alternative approach, it doesn't follow the main guidelines, but it is certainly a legitimate secondary approach I am using. I don't feel in any jeopardy," he said.

That's why Rill is willing to fly to Calgary to see Dr. Hawkins.

She's been on a waiting list since last September and just found out she may have to wait another year or longer.

Hawkins has more than 200 people on his waiting list, and he has decided to temporarily stop adding new patients.

"Canada is not coming through for us," Rill said, fighting back tears.

Rill's symptoms are worsening and she's feeling desperate. She's now considering spending some of her retirement savings on a trip to the U.S. to seek faster treatment.

"I don't think I can wait much longer, I'm in too much pain."


Shari Okeke is writer/broadcaster for Daybreak on CBC Radio, and creator of Mic Drop, an award-winning CBC original podcast.