Six myths about Lyme disease that harm patients in Canada

Lyme disease and other tick-borne infections are a much more common topic of discussion in Canada these days as they become more prevalent. 

Thanks largely to the work of organizations like the Canadian Lyme Disease Foundation (CanLyme) and their allies in the health-care and research sectors, there’s been some progress in raising awareness, although there’s a lot more work to be done.

But as ticks rapidly expand their footprint in this country thanks to climate change, and knowledge about the phenomenon evolves, health professionals, epidemiologists, researchers and the media have not followed up with sound advice about how to diagnose, treat and prevent Lyme disease.

That’s led to some persistent myths and misinformation about Canada’s most common vector-borne illness that harm patients’ health and even endanger their lives. 

Read on as we identify some of them and debunk them with the facts.

MYTH: Diagnosing and treating early Lyme disease is easy

FACT: Many early cases don’t get detected and treated properly

Some health professionals continue to portray early Lyme disease as a straightforward infection for doctors to identify and treat – even though evidence is mounting that it’s not the case. 

This belief is reflected in a report that aired January 18 on CBC Television and is available online, and even in this CTV interview with a reputable and knowledgeable public health professional.

But nothing can be further from the truth.

Although Lyme disease has had a growing presence in Canada for several decades, many primary care physicians still don’t know a lot about it. 

Lyme disease symptoms can mimic those of many other infections, most notably the flu, which can lead to frequent misdiagnosis.

In addition, getting tested for Lyme disease can be a slow process in Canada. 

The two-step test used in this country to diagnose Lyme disease doesn’t detect the bacteria itself but the antibodies your body produces to fight it. So, if you get tested after a tick infects you but before your immune response kicks in, chances are the test will produce a false negative and you won’t get the treatment you need. 

And while the course of antibiotics doctors usually prescribe to get rid of the infection is effective in the vast majority of cases, it doesn’t completely cure everyone. According to a recent American study, a large percentage of patients whose symptoms persist after the initial course of treatment don’t get follow-up care. There’s no reason to doubt Canada has the same problem. 

MYTH: The existence of chronic Lyme is not supported by science 

FACT: Studies show Lyme Infection-Associated Chronic Illnesses do exist 

Many infectious disease specialists and researchers still believe chronic Lyme doesn’t exist, and it’s at the centre of an ongoing debate among health-care professionals. This belief gets repeated in media reports – including the CBC story we’ve already mentioned.

Some of these experts cling to the idea that the debilitating Lyme-related symptoms are all in your head because tests can’t detect the bacterial infection that caused the original illness.

Doctors often dismiss these long-suffering patients – studies show this happens more often to women than men – and tell them they must have some other problem, leaving them to battle painful, debilitating symptoms, often for decades. 

But that’s not the conclusion of top scientists who took part in a recent landmark study commissioned by the prestigious National Academies of Science, Engineering and Medicine (NASEM) in the United States. 

They highlight evidence showing debilitating Lyme symptoms do persist – very much like long COVID – sometimes for years, even decades. The authors say the need to find effective treatments is urgent. 

The NASEM researchers have proposed a new name for these cases: Lyme Infection-Related Chronic Illnesses (IACI), as a less politically charged, less divisive alternative to the terms long or chronic Lyme. 

Moreover, multiple studies – including this one from 2019 – show the bacterium that causes Lyme disease, a spirochete called Borrelia burgdorferi, can persist undetected in patients’ tissues well after the initial infection. This particular paper showed traces of DNA from the pathogen in the post-mortem examination of a patient’s brain.

“Invasion of immune-privileged sites (such as the brain)allows the spirochetes to not only escape from the host immune system but can also reduce the efficacy of antibiotic therapy,” the article states.

MYTH: Government estimates of Lyme case numbers are accurate 

FACT: Many Lyme cases go unreported and uncounted

To be fair, journalists don’t often explicitly say this and many do report official case numbers are most likely an “underestimate.”

But as in this story – an otherwise comprehensive report on the rise in cases of tick-borne illnesses from the CBC Health Unit – some uncritically quote reported case numbers from federal and provincial government websites. 

That can leave the impression that Lyme disease might be much less prevalent than it actually is.

In fact, a study by a senior research scientist with the Public Health Agency of Canada, Dr. Nick Ogden, shows Lyme case numbers are more than 13 times higher than the official estimates.

MYTH: You’re most at risk of getting bitten by ticks out in the country

FACT: Ticks are common in urban and rural areas

The risk of of getting Lyme disease might have been much lower in cities decades ago when ticks carrying the bacteria first expanded their ranges into parts of southern Canada. 

But now it’s a dangerous myth because it gives people who live in urban areas a false sense of security. 

The truth is if you live in a city or a suburb – especially in regions where Lyme disease is endemic – ticks can latch on to you anywhere there’s a patch of greenery. You can cross paths with them while walking your dog in a downtown Toronto park. Your kids can encounter them on the playground behind their inner-city daycare. 

MYTH: The bullseye rash is the most common symptom of Lyme disease

FACT: Not everyone with Lyme gets a rash

Some media reports, and even some researchers, quote estimates that suggest the erythema migrans, or bullseye rash, shows up in the vast majority of cases. 

But a number of studies, like this one, show it’s a lot less prevalent. The researchers looked at 101 kids with a clinical diagnosis of persistent Lyme. Just 40 per cent had a history of a rash. Just 15 per cent had had a bullseye rash.

This persistent myth presents a problem for patients because many doctors assume if no bullseye rash is present, then neither is Lyme disease. Furthermore, even when a rash is present it does not always have a bullseye appearance.

That mistake can lead to a diagnosis much later in the course of the infection when it’s much more damaging and a lot harder to treat. 

MYTH: Lyme disease is ‘fashionable’ among the rich and famous 

FACT: Just because the stars are getting it, doesn’t mean the diagnosis isn’t real

The latest public figure to announce he’s battling Lyme disease is tech titan Greg Yang, a co-founder of xAI, Elon Musk’s artificial intelligence startup. 

Stories published on Yang’s diagnosis do little to explain the difference between early and chronic Lyme and might be misleading to some readers. 

While the CBC has published a lot of useful information on Lyme disease over the years, their report aired in January is just one of many perpetuating the idea that Lyme is an “illness du jour” among celebrities.

The story asked why so many famous people are announcing they’ve got some form of Lyme disease these days – implying that it’s the fashionable thing to do and that all these stars are falling prey to disinformation and quackery. 

The story doesn’t acknowledge the possibility that some of them might have actually contracted a disease that’s endemic in many regions of North America, and that not all celebrities live – or spend all their time – in Southern California where reported case numbers aren’t as high. 

The sad truth is no matter who you are, no matter where you are, a tick can bite you and you can get Lyme disease.