Lack of effective healthcare for Canadian Lyme patients and why they turn elsewhere

Recent articles are once again shining a spotlight on the systemic dysfunction in the Canadian healthcare system in relation to Lyme disease.

An inquiry is underway to examine the circumstances that lead to the death of a young woman with Lyme disease.¹ Our hearts go out to her family for their loss and for the subsequent distress they are likely experiencing as a result of this inquiry. The articles reports on the testimony of a Canadian infectious disease specialist who puts into question the young woman’s diagnosis and treatment for Lyme and other tick-borne infections.

This story unfolds in the shadow of the even bigger question to ask, which is why do so many Canadian patients look to the US and other countries when seeking diagnosis and treatment for Lyme disease? 

First and foremost, it’s important to acknowledge that the situation, like the disease itself, is complex. For decades now, limitations in research have left us with many missing pieces to the puzzle. For many chronic Lyme patients in Canada though, this is what can happen. 

A healthy person becomes ill with symptoms that are often fluctuating, confusing and life altering. After seeing their family doctor and quite often a number of specialists (neurologist, rheumatologist, psychiatrist to name a few) they are tested for diseases that match their symptoms. If they receive a diagnosis and effective treatment for their disease they look no further.  

If they remain ill, they may consider the possibility of Lyme disease. Sometimes the suggestion comes from a friend, a family member or from a healthcare provider. By now, they will have had symptoms for months or sometimes years. If their physician agrees to order the test, and it comes back negative, many will leave it at that. 

Many of those patients will continue to get worse. 

It’s important to emphasize that, with or without a Lyme diagnosis, patients and physicians need to keep other diagnoses on their radar. It’s very possible to have Lyme disease alongside other serious health issues. 

There is a growing body of evidence showing that Borrelia, the bacteria that causes Lyme disease, interferes with normal immune pathways through several different mechanisms.² The current testing in Canada relies on a patient’s antibody response, which can be affected by a person’s immune function. In addition, the performance of this test is measured based on blood samples from a well defined group of patients. The tests may be accurate for that well defined group of patients, but not for all patients infected with one of the many strains of the Borrelia.

Currently, there is a lot of research worldwide aimed at developing better tests for acute and chronic Lyme disease because the ones we have now fall short.

After going through all of this, where does that leave the patient? Physicians will often consult with an infectious diseases specialist for guidance. Infectious disease specialists like the one in this story often maintain that our current testing is accurate in later stages of the disease and will caution physicians that all testing beyond the standard Canadian two tiered test is flawed.

From their perspective, the patient doesn’t have Lyme disease. This is the end of story for the specialist, but unfortunately not the end of the story for the patient.

People want to be healthy. Many will keep at it until they find someone who is willing to help and in Canada, there are very few options. Despite the fact that there are other guidelines worldwide that address the complexities of chronic Lyme disease, Canadian physicians have been encouraged to use those developed by the Infectious Diseases Society of America, or IDSA. Encouraged is not really the right word to use here – many Canadian physicians have publicly or privately come under fire or flagged for treating Lyme disease outside of these limiting guidelines. Some have lost their license to practice. 

Despite the large body of evidence confirming that persistence of Lyme bacteria after standard antibiotic treatment is possible, Canadian health agencies are reluctant to acknowledge this fact. Unfortunately, our tests are not able to determine whether or not the bacteria has been eradicated after treatment. This leaves patients and physicians with a lot of uncertainty and ambiguity regarding treatment success, especially for those with ongoing symptoms.

In the context of this uncertainty, patients are often informed that long term antibiotics are ineffective for treating chronic symptoms of Lyme disease and may have serious side effects or even cause death. 

Unfortunately, not treating patients can also have serious side effects or even cause death.

Currently research is underway to develop more effective treatments because the ones we have now fall short. 

It’s important to note at this point that, until recently, there has been very little research regarding the treatment of chronic Lyme disease. There currently are no simple, well researched, universally effective treatments for Lyme disease. It’s messy. Sometimes people get worse before they get better, but many people do get better. 

There is a very large number of first hand accounts of people, some of them very well known, who have recovered with treatment. It may not be research, but it is evidence. There are clinicians in the US and internationally that are successfully treating patients, and gaining invaluable expertise along the way. 

Unfortunately, many Canadian patients don’t have the resources to access these treatments.

One of the challenges in treating Lyme patients is that it takes a lot of time and effort and often requires trying out different treatment options. It’s the kind of medicine that our intelligent and well educated doctors train for. They’re very smart people and should be trusted to use their intelligence and training, especially when it comes to  complex, under-researched illnesses like Lyme disease. For those wanting to learn more about tick-borne illnesses there are courses available that have been developed by scientists and physicians who have successfully treated thousands of patients in endemic areas of the US and Europe. 

There are no simple answers to this complex problem. Better tests are currently being developed, but in the meantime physicians can make a clinical diagnosis of Lyme disease and collaborate with other clinicians, including Canadian and international specialists, to care for these patients. Supporting Canadian doctors to diagnose and treat all of their Lyme patients in Canada will help to grow their expertise in treating this complex illness, and help patients find solutions within our healthcare system.

1. Read about the tragic death of Amélie Champagne and the inquest.
2. See this explanation, “Report of the Pathogenesis and Pathophysiology of Lyme Disease Subcommittee of the HHS Tick Borne Disease Working Group“,  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8215209/