Defining Moment: Should We Reconsider How We Are Defining Lyme Disease?

In order to solve a problem, you must first be able to define it. I think most of us can agree on that.

One of the interesting things about Lyme disease is that it doesn't currently have a definition that's universally agreed upon, something that has led to a great deal of rancour, confusion, and wildly unproductive conversations. I've come across many situations where it hasn't been totally clear that everyone involved is talking about the same illness. I mean, they're all calling it Lyme disease, but often the name is the only thing they can agree on.

The strictest definition of Lyme disease holds that it's an inflammatory illness caused by the bite of a tick infected with Borrelia burgdorferi bacteria. For the longest time, that was pretty much the only definition you would find on public health websites. It was a good starting point, but as many people have pointed out over the past decade, we now know that Lyme disease is caused by several different species of borrelia bacteria and limiting the definition to the first one discovered way back in the early 1980s is both misleading and counterproductive. While there are still some health departments clinging to that original definition, many have updated their information to include the possibility that Canadians are contracting other forms of Lyme bacteria either through travel to the United States and Europe or through exposure to lesser known species (or strains of dominant species) within Canada.

Technology deficit

But defining Lyme disease as infection with borrelia bacteria is in itself problematic since that definition requires that you prove exposure to the bacteria in question. To date, no one has figured out a reliable way of doing that. Attempts to culture Lyme bacteria in labs have produced results that are too inconsistent to be used for general diagnostic purposes and the antibody testing that was implemented as the next best option has been dogged by a myriad of issues that have led health authorities to recommend clinical diagnosis, not testing, be used to identify cases of Lyme. And yet for all of the benefits that clinical diagnosis confers, it falls short of proving infection with borrelia bacteria or any other pathogen, which basically means that Lyme disease has been defined in a way that current technology cannot support.

Nothing incite's the ire of Lyme disease sufferers quite like health authorities or doctors questioning whether many of the people claiming to have Lyme disease really have it. Anyone who was clinically diagnosed with Lyme disease as per the current recommendations cannot prove exposure to borrelia bacteria, which leaves them open to being dismissed by doctors or health authorities who insist on that proof. Lyme disease has not, after all, been traditionally defined by its symptoms. It's been defined by exposure to borrelia bacteria and while that definition prevails, anyone with a clinical diagnosis of Lyme disease faces an uphill battle to have their case recognized.

Complicating factors

To complicate things further, we now know that it's possible to contract multiple tick-borne pathogens from the bite of a single tick, that those pathogens can cause symptoms that overlap with those of Lyme, that many of those pathogens don't succumb to the antibiotics used to treat Lyme, and that these secondary infections often need to be dispatched before a Lyme infection will respond to treatment. The reliability of testing for these pathogens varies and researchers suspect that there may be many co-infecting organisms that have not yet been identified. You can't test or treat for an organism that remains anonymous. Nor can you ignore the impact these co-infections have on a Lyme sufferers, often leading to a protracted illness with many more symptoms than those caused by infection with borrelia bacteria alone.

We also now know that there tends to be an autoimmune syndrome associated with chronic cases of Lyme disease. There is considerable debate over whether this syndrome is driven by ongoing infection or by a confused immune system in the absence of infection, but the bottom line is that Lyme disease sufferers who were not quickly diagnosed often find themselves under attack by their own immune systems which have, for unknown reasons, decided to target healthy tissue for destruction with impacts that range from mild to catastrophic.

This is just a sampler of the things we now know that were not known when Lyme disease was first defined back in the early 1980s. That definition led to antibiotics being the primary - and in many cases only - treatment offered to Lyme disease sufferers. However, antibiotic treatment alone often fails to cure sufferers of advanced Lyme disease who in many cases are returned to health only after many years of addressing complicating factors, including the few I mention above.

Two camps

Health authorities have been slow to recognize the deficits in the prevailing definition of Lyme disease and even slower to address the ongoing issues that cause Lyme sufferers a great deal of confusion, disability and frustration. There is a tendency amongst health authorities to want to split Lyme disease sufferers into two camps - those who have proof of bacterial infection and everyone else - arguing that anyone who can't prove bacterial infection is likely to be suffering from something other than Lyme disease. It's an interesting approach, largely because it fails to recognize that the healthcare system is doing a poor job of assisting many of those Lyme disease patients who can prove bacterial infection. That's a topic on which health authorities remain largely silent.

This brings us back to the way Lyme disease is being defined. There is a push to move away from the traditional definition of Lyme disease by many who believe that it is causing more harm than good, forcing a situation where those who require proof of bacterial infection are dividing Lyme disease sufferers into two different camps, dealing adequately with neither, and fairly universally failing to recognize that thousands of sick people in Canada are being left to suffer endlessly while doctors, health officials, and advocates bicker over what it means to have Lyme disease.