This Ontario father had to relocate his family to BC for treatment for Lyme disease

For many Canadians, Lyme disease is not a priority. If you are walking or camping with your family through a tall patch of grass, a small alarm bell may sound, reminding you to check for ticks that may transmit Lyme disease.

For Louis Themeles, a tick bite didn’t seem to be a big concern.

Louis and his wife Rachel are from Hamilton, Ontario. where he works as a school teacher and she is a clerk at Hamilton Health Sciences. They have two healthy and active boys and are a loving and true Canadian family in every way.

Ten years ago, Louis’ brother noticed a tick on his back. According to Louis, it was probably there for a few weeks and was removed as soon as they noticed.

“[Lyme disease] wasn’t at the forefront of my mind or anyone’s,” he said. “It wasn’t on the mind of, say, someone in their mid to early 20s.”

Lyme disease is transmitted through the bite of an infected black-legged tick. According to the Canadian government’s website, symptoms can vary from person to person.

After the first tick bite, he had intermittent health problems that confused the doctors.

“They couldn’t figure it out. It took about a year and a half and then we did blood work and all the tests, but they said, ‘We don’t know what it is,'” Louis recalled.

The final conclusion was that he was infected with a virus and that was what he was left with.

The turning point for the Themeles family came on June 30, 2020 when Louis and his son went for a walk.

“I just got disoriented … felt like I was going to fall and I got a little bit excited, disoriented, and eventually I just felt like a sweeping sensation,” he said.

Due to the hot weather at the time, Louis’ episode was attributed to slight overexposure from the heat. But the next day he woke up with photosensitivity, restricted mobility, sweating and nausea.

“Everyone just thought maybe it was heat exhaustion and then it wasn’t. It just got worse from there.”

Louis initially tested negative for Lyme disease when he took a Canadian test. This led doctors to believe he had a genetic condition like ALS or MS. Louis says that as the disease progresses, it shows symptoms associated with various genetic diseases.

Only after taking a test from the US did he get an accurate positive result. The test also revealed that Louis tested positive for chronic Lyme disease, meaning the disease had been in his system for a long time.

The experience of the Themeles family is not unique. According to Janet Sperling, president of the Canadian Lyme Disease Foundation, false negative results in Lyme disease tests are at the heart of the problem.

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 create a false negative.

Louis says it’s a 25-year-old test that only looks at certain strains from 25 to 30 years ago.

Sperling reflected this by saying Canada had adopted a very conservative interpretation of testing and diagnosing Lyme disease. While she acknowledges that Canada’s overall healthcare system is great, “we missed the ball when it came to Lyme disease.”

“We’re not talking about these really complicated cases that have been overlooked. And we know there are a lot of them because our testing was so conservative that a lot of people would go to the US and get that positive test result,” Sperling said.

The Themeles family has now relocated to Vancouver to receive treatment at Yaletown Integrative Medicine.

Louis is currently on three oral antibiotics and an autoimmune modulator. On the day Louis spoke to Glacier Media, he had also been undergoing intravenous antibiotic treatment because the condition has become so widespread and chronic. His treatment will take six months to get prognostic results.

Although Louis is receiving the treatment he needs, the financial cost of moving and receiving treatment has not been easy for the family.

According to a GoFundMe page set up by his wife, the expenses incurred come from:

• Routine intravenous, intravenous antibiotic administration (100% not covered)
• Antibiotic drug fees (40 percent not covered)
• Immunomudaltor drugs (100% not covered)
• Transport/Flights (100% not covered)
• Housing displacement (100% not covered)

Despite Ontario being a hotspot for Lyme disease, no treatment options were available there, forcing the family to relocate.

Sperling says there is a “super big concern” about antibiotic resistance right now.

“Doctors don’t prescribe antibiotics for a long time [Lyme disease]she said, adding that if the treatment was anything other than antibiotics, “I suspect you would get a lot more treatment.”

Rachel says her husband’s case is bringing Canadian testing and treatment for Lyme disease to the fore, which she says can result in patients falling through the cracks of the system. Louis says he’s incredulous that anyone would have to go through something like this.

“If you’re not living it, then it’s not really in your head,” Rachel said.

She noted that as the COVID-19 pandemic began and testing became a normal part of the Canadian lifestyle, adjustments were made to improve outcomes.

“Look how much we’ve adjusted the vaccines, tested false negatives and false positives in the last two years, but we can’t do that for Lyme disease in 25 years,” Louis said.

Both Rachel and Louis see the need for immense change in Canada’s healthcare system. According to Louis, solutions can be found through more resources for naturopaths, as well as an overhaul of how doctors are educated about the signs of Lyme disease.

“I think the current global health climate in Canada has evolved and changed and therefore we need to change. We cannot resist this change. And we need to update our medical practices to match the standards and reputation we have in the world,” he said.

Anyone who would like to support the Themeles family can visit their GoFundMe page.