The available diagnostics for Lyme Disease just aren’t cutting it.
It’s hard to test for and mirrors other illnesses, making it incredibly difficult to come up with a standardized treatment plan.
Diagnostically, Lyme disease is practically invisible. It spreads throughout the body in trace amounts, making it hard to detect.
That’s where researchers at the University of Guelph come in.
Since 2017, the G. Magnotta Lab has been tackling challenges with the diagnosis, prognosis and treatment of Lyme disease, a vector-borne bacterial infection that can be transmitted to humans through tick bites.
It’s a growing concern in Ontario, as the habitat for the ticks that transmit Lyme disease expands, increasing the number of problem areas.
But it’s not just endemic areas – there is a risk of ticks elsewhere, even in your backyard.
Once a tick bites you, the bacteria can invade sites all over the body, meaning symptoms vary from person to person.
“Lyme disease can look very different in different people,” said founding director Melanie Wills. “We can have cardiac manifestations, neurological manifestations, rheumatic manifestations, or you can have a mixture.
“It gets very complicated if the disease is left unchecked.”
Currently, the test for Lyme disease looks at whether you’ve ever been exposed to the bacteria, not whether you’re infected with it right now.
“There are problems with that, because essentially it’s using the immune system to ask, have you seen this infectious agent?”
The immune system might not respond right away, meaning if you have acute Lyme disease, you will likely test negative for the first several weeks.
There is an antibiotic intervention that can help contain and resolve the infection, but if it isn’t addressed right away it can turn into a “system-wide infection” with many different manifestations.
The first symptoms typically arrive within four to six weeks. A bullseye rash is one of the most obvious symptoms, though not everyone gets one.
“The issue with early stage Lyme disease is that you don’t always have really obvious symptoms,” she said.
In some cases, it might just seem like the flu.
“And that’s where it becomes very problematic, because you wouldn’t necessarily get antibiotics as a first line of treatment if you think you have a cold or the flu,” she said. “The sooner that you can get antibiotics, the better. You don’t want this thing taking hold.”
Even in later stages, it often gets confused with other chronic illnesses like fibromyalgia, chronic fatigue or long COVID, making treatment plans hard to nail down.
Between 10 to 30 per cent of people treated for Lyme disease will continue to experience symptoms after treatment, but what drives the ongoing symptoms and how to treat them is controversial and unclear.
“There’s no medical or scientific consensus,” she said.“Is it, you’ve got this long-standing infection that’s keeping you sick, or has it rewired the immune system or done other damage to your body?
Long-term symptoms can range from brain fog, crushing fatigue, pain, gastrointestinal problems – “basically any system of the body can be hit.”
The fight against the disease is a personal one for many on the team, who have experienced chronic illnesses first-hand.
Wills has been ill since she was 10.
Like many with Lyme disease, she never had any real diagnostic evidence to come up with a clear treatment plan.
“You fall into this category of people who become chronically ill, and there’s really no cure for them, essentially,” she said.
She spent years bouncing between specialists to no avail. It wasn’t until she was in grad school that a specialist asked her about her history of tick exposure.
It sent her down a rabbit hole of “realizing how little we know and how the evidence we have right now leaves a lot of gaps.”
“The more I read and the more I found those gaps, the more I figured that I could be a force of good in this space, because I was already training in molecular basis of disease,” she said. “That was a big motivator for me, being sick and then seeing the diagnostic uncertainty and realizing it doesn’t have to be this way.”
While she never determined whether it was Lyme disease she had, she considers herself to be “Lyme adjacent.”
“I feel kind of uniquely responsible, because I have this experience and expertise, and I can do something about it,” she said.
She’s not the only one: there are others in the lab with Lyme disease or who have had Lyme disease, bringing a unique perspective to the team.
“It’s immensely valuable to bring people onto a research team who suffer from the disease in question, because they have a different way of looking at things. It adds a lot of balance to the research team.”
Their work is largely focused on making the invisible disease visible to testing tools.
For example, since it can’t be detected in massive amounts, you can’t just draw a vial of blood and easily test for the pathogen.
Fortunately, their research has shown that blood can be processed in a certain way that makes the biomarkers more obvious, she said, which is a step in the right direction.
The dream is that if someone is bitten by a tick and thinks they might have Lyme disease, they can walk into a clinic and get a test on the spot, without having to wait weeks for the results or go to a specialist. The test would clearly show whether they have Lyme disease and a treatment plan could follow.
The lab recently received a $2 million gift from the G. Magnotta Foundation to further its work. You can read more about the donation from the foundation here.
