For many Canadians, Lyme disease is not a concern that is top of mind. If you’re walking through a tall patch of grass or camping with your family, a small alarm bell might go off reminding you to check for ticks that may be carrying Lyme disease.
For Louis Themeles, a tick bite didn’t seem like a big concern.
Louis and his wife Rachel are from Hamilton, Ont. where he works as a school teacher and she is an office administrator with Hamilton Health Sciences. They have two healthy and active young boys and in all ways are a loving and typical Canadian family.
Ten years ago, Louis’s brother noticed a tick on his back. According to Louis, it was probably there for a couple of weeks and was removed as soon as they became aware.
“[Lyme disease] wasn't on the forefront of my mind or anyone's mind,” he said. “It was not in the mind of, say, someone in their mid- to early-20s.”
Lyme disease is transmitted through the bite of an infected blacklegged tick. According to Canada's government website, symptoms can vary from person to person.
After the initial tick bite he experienced intermittent health issues that puzzled doctors.
"They couldn't figure it out. It lasted about a year and a half and then we did blood work and all the testing but they said, 'We don't know what it is,'" Louis recalled.
The final conclusion was that he had a virus rip through him and this was what he was left with.
The turning point for the Themeles family came on June 30, 2020 when Louis and his son were walking.
“I just became disoriented... feeling like I was gonna fall and I kind of became a bit agitated, disoriented, and eventually I just felt like a sweeping sensation,” he said.
Because of the hot weather at the time, Louis’s episode was attributed to a bit of over-exposure from the heat. But the next day he woke up with sensitivity to light, low mobility, the sweats and nausea.
“Everyone just thought maybe it was heat exhaustion and then it wasn't. Things kind of got progressively worse from there.”
Louis initially tested negative for Lyme disease when he took a Canadian test. This led doctors to believe that he had a genetic disease like ALS or MS. Louis says that as the disease progresses, it presents symptoms that are associated with various genetic diseases.
It was only after taking a test from the U.S. that he got an accurate positive result. The test also showed that Louis had tested positive for chronic Lyme disease, meaning the illness had been in his system for a long time.
The experience of the Themeles family is not unique. False negatives in Lyme disease testing are the crux of the issue, according to Janet Sperling, president of the Canadian Lyme Disease Foundation.
She says when someone is tested for Lyme disease they look for an antibody response in the blood. It works for some but for others it can produce a false negative.
Louis says it’s a 25-year-old test that only accounts for specific strains from 25 to 30 years ago.
Sperling mirrored this by saying that Canada has taken a very conservative interpretation of testing and diagnosing Lyme disease. While she acknowledges that overall the Canadian health system is great, “we missed the ball when it came to Lyme disease.”
“We're not talking about these really complicated cases that were missed. And we know that there's a lot of them, because our testing was so conservative, that many people would go to the U.S. and they would get this positive test result,” Sperling said.
The Themeles family has now relocated to Vancouver in order to get treatment at Yaletown Integrative Medicine.
Louis currently takes three oral antibiotics and an auto immune modulator. On the day that Louis spoke to Glacier Media, he had undergone intravenous antibiotic treatment as well due to how widespread and chronic the condition has become. His treatment will last six months pending prognostic results.
Though Louis is receiving the treatment he needs, the financial costs of having to relocate and get treatment has not been easy on the family.
According to a GoFundMe page set up by his wife, the costs accrued are from:
- Routine intravenous, IV antibiotics administration (100 per cent not covered)
- Antibiotics medication fees (40 per cent not covered)
- Immunomudaltor medication (100 per cent not covered)
- Transportation/flights (100 per cent not covered)
- Housing displacement (100 per cent not covered)
Despite Ontario being a hotspot for Lyme disease, there were no treatment options available there, forcing the family to relocate.
Sperling says there's a "super big concern" right now about antibiotic resistance.
"The doctors are loath to give antibiotics for the longer term [Lyme disease]," she said, adding that if treatment was anything but antibiotics, "I suspect you would get a lot more treatment."
Rachel says her husband's case brings Canadian testing and the treatment of Lyme disease to the forefront, which she says can cause patients to fall through the cracks of the system. Louis says he is in disbelief that anyone would have to go through something like this.
“Unless you live it, then it's not really on the forefront of your mind,” said Rachel.
She noted that when the COVID-19 pandemic began and testing became a normal part of the Canadian lifestyle, adjustments were made to improve results.
“Look how much we've adapted the vaccines, testing false negatives, false positives in the last two years, but yet we can't do that for Lyme disease in 25 years,” Louis said.
Both Rachel and Louis see the need for immense change in Canadian health care. Louis says solutions can come from more funding into naturopaths as well as an overhaul on the education of physicians on the signs of Lyme disease.
“I think that the current global health climate in Canada has evolved and changed and so we need to change with it. We can't be resistant to that change. And we need to update our medical practices to be in line with the standards and the reputation that we have in the world,” he said.
Anyone wishing to support the Themeles family can visit their GoFundMe page.