Justin Bieber’s recent Lyme disease diagnosis has put another big spotlight on an illness that’s still shrouded in mystery, both in the public eye and the medical and scientific communities.
The pop superstar from Stratford, Ont., announced his condition on his Instagram account earlier this week, making him the third major Canadian singer to open up about being diagnosed with Lyme in recent years, after Shania Twain and Avril Lavigne.
The head of the British Columbia-based Canadian Lyme Disease Foundation says the testing and treatment processes for Lyme in Canada are problematic, and he hopes high-profile cases like Bieber’s will highlight those issues.
“The more attention we can bring to this, the better, because the numbers are becoming staggering across Canada and the vast majority of them are not being diagnosed,” says Jim Wilson, president and founder of the charity who contracted Lyme himself in Nova Scotia in 1991. His daughter was diagnosed with it in B.C. in 2001.
“We’re having a whole percentage of the population who’s being misdiagnosed with all kinds of other things, when actually it’s Lyme disease. And so they’re not getting effective treatment.”
Melanie Wills, director of the G. Magnotta Lyme Disease Research Lab at the University of Guelph in Ontario, says Bieber’s case also shows that the illness doesn’t discriminate.
“I think there are perceptions that it is maybe hard to contract and easy to cure, maybe that it’s not much of a problem in Canada, and there’s data that challenge those assumptions,” says Wills, a PhD research scientist.
“People don’t necessarily realize that they’re at risk. Well, if celebrities are falling victim to this, then we all have to be vigilant.”
Lyme is an infectious disease caused by the bacteria Borrelia burgdorferi, which is transmitted to humans by blacklegged ticks and western blacklegged ticks that have picked it up from infected animals.
According to the Public Health Agency of Canada (PHAC), the number of Lyme disease cases reported by all provinces increased from 144 in 2009 to 992 in 2016. That year, federal health officials partly blamed the rise on global warming, which aids the spread of ticks.
The latest figures on the PHAC website are from 2017, which had 2025 cases.
Wills says the first problem with diagnosis is that some people don’t realize they’ve been bitten by a tick and therefore don’t link their symptoms to Lyme.
And the symptoms vary. While some patients develop a telltale bull’s-eye rash at the site of the bite, others don’t.
Other immediate symptoms of Lyme disease include fever, headache, body pain and fatigue, which some patients may assume is the flu.
Issues also surround testing.
Wills says Lyme is diagnosed in Canada using a blood test that looks for the body’s immune response to the disease — a response known as antibodies.
If the test is done in the early stages of Lyme, the body may not have had enough time to react to the pathogen and therefore not built up enough antibodies to be detected. A patient who has a lower immune system function may also not produce enough detectable antibodies.
That could lead to a patient testing negative result for Lyme, even if they have it. Wilson says both he and his daughter came up negative for Lyme when they were first tested in Canada. They later tested positive when they paid for an at-home test kit and sent blood samples to a lab in Northern California.
Wills says it’s ideal to treat the disease in its early stages with antibiotics, so it doesn’t spread around the body, but the current testing method isn’t reliable enough for that to happen.
“It would go a long way to have a direct test for active microbial infection” rather than an indirect test that relies on immune response, Wills says.
Treatment for Lyme in Canada typically involves 14 to 21 days of antibiotics, says Wills.
“The problem is that by the time a person gets the test results, the bacteria has already disseminated into the tissue and organs, and every animal study that’s been done has shown that the bacteria can survive even 90 days of antibiotics,” says Wilson.
“So we need longer regiments, longer treatment terms for Lyme disease to be efficient, and you can’t access that in Canada.”
Both Wills and Wilson say there’s also no consensus between provinces on how to deal with long-standing Lyme symptoms that don’t respond to 14 to 21 days of antibiotics.
Some practitioners will put patients on higher doses of antibiotics for longer periods of time, believing it’s an ongoing infection. But others argue against that, believing that symptoms that persist beyond the 21-day treatment point don’t necessarily have a microbiological origin.
In some states south of the border, Wills says there’s legislation allowing doctors to use clinical judgment when it comes to longer treatment for Lyme.
Some Lyme patients in Canada are now looking for expensive longer-treatment options in the U.S., says Wilson.
“We’ve got a problem. Now let’s figure out a way to fix it,” Wilson says.
“Until patients and their expert representatives are given equal say on the development of policy, nothing’s going to change.”
Victoria Ahearn, The Canadian Press