For many Canadians, Lyme disease is not a concern that is top of mind. If you’re walking through a patch of tall grass or camping with your family, a little alarm bell might go off reminding you to check for ticks that might be carrying Lyme disease. For Louis Themeles, a tick bite didn’t seem like much of a concern. Louis and his wife Rachel are from Hamilton, Ont. where he works as a school teacher and she is an office manager at Hamilton Health Sciences. They have two healthy and active boys and are by all accounts a loving and typical Canadian family. Ten years ago, Louis’ brother noticed a tick on his back. According to Lewis, it was probably there for a few weeks and was removed as soon as they noticed it. “[Lyme disease] it wasn’t at the forefront of my mind or anyone else’s,” he said. “It wasn’t 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 the Government of Canada website, symptoms can vary from person to person. After the initial tick bite, he experienced periodic health problems that puzzled 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 bottom line was that a virus broke him and that’s 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 got disoriented … I felt like I was going to fall and I kind of got flustered and disoriented and finally it felt like a sweeping sensation,” she said. Due to the hot weather at the time, Louis’ episode was attributed to a bit of overexposure from the heat. But the next day she woke up with sensitivity to light, low mobility, sweats and nausea. “Everyone just thought maybe it was heat exhaustion and then it wasn’t. From then on, things got progressively worse.” Louis initially tested negative for Lyme disease when he took a Canadian test. This led doctors to believe he had a genetic disease such as ALS or multiple sclerosis. Louis says that as the disease progresses, it presents with symptoms associated with various genetic diseases. Only after taking a test from the US did he receive an accurate positive result. The test also showed that Louis had 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. False negatives in tests for Lyme disease are the crux of the matter, according to Janet Sperling, president of the Canadian Lyme Disease Foundation. He 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 test that only represents specific strains from 25 to 30 years ago. Sperling reflects this by saying that Canada has adopted a very conservative interpretation of Lyme disease testing and diagnosis. While he acknowledges that overall the Canadian health care system is excellent, “we dropped the ball when it came to Lyme disease.” “We’re not talking about these very complicated cases that were lost. And we know there are a lot of them because our tests were so conservative that a lot of people would go to the U.S. and get that positive test result,” Sperling said. The Themeles family has now moved to Vancouver to receive treatment at Yaletown Integrative Medicine. Louis is currently on three oral antibiotics and an autoimmune regulator. On the day Louis spoke to Glacier Media, he was also on IV antibiotics due to how widespread and chronic the condition has become. His treatment will last six months pending prognostic results. Although Louis is receiving the treatment he needs, the financial costs of moving and treatment have not been easy for the family. According to a GoFundMe page set up by his wife, the expenses raised are from:
Regular intravenous, IV antibiotics (100 percent not covered) Antibiotic drug fees (40 percent not covered) Immunomodulatory drug (100 percent not covered) Transportation/flights (100 percent not covered) Residential relocation (100 percent 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 is a “super big concern” right now about antibiotic resistance. “Doctors don’t want to give antibiotics long-term [Lyme disease]”, he said, adding that if the treatment was anything other than antibiotics, “I suspect you would be getting a lot more treatment.” Rachel says her husband’s case brings to light Canadian testing and treatment of Lyme disease, which she says can cause patients to fall through the cracks in the system. Louis says he doesn’t think anyone should have to go through that. “If you don’t experience it, then it’s not really at the forefront of your mind,” Rachel said. He noted that when the COVID-19 pandemic began and testing became a normal part of the Canadian way of life, adjustments were made to improve results. “Look at how much we’ve adjusted vaccines, testing false negatives, false positives in the last couple of years, but we can’t do that for Lyme disease in 25 years,” Louis said. Both Rachel and Louis see the need for massive change in Canadian health care. Louis says solutions can come from more funding for naturopaths as well as an overhaul of doctor training on the signs of Lyme disease. “I think the current global health climate in Canada has evolved and changed and so we have to change with it. We cannot resist this change. And we need to update our medical practices to be in line with the standards and reputation we have in the world,” he said. Anyone wishing to support the Themeles family can visit the GoFundMe page.
