The Dread Lyme Disease

"What we see a lot -- both with pain and Lyme disease -- is that when we can't provide a good explanation about what's going on, we act like it's somehow the patient's fault. Like it must be all in their head."

"Imagine if you had these terrible symptoms and they occurred every day and they got in the way of your ability to socialize, to work, to enjoy your family -- and people kept telling you that you were making ti all up. That's a terrible way to live. It's a challenging problem and one that we would like to reverse."

"We're starting from the idea that people's symptoms are real and we want to hear about them. Sometimes in these studies we treat variations and individual differences as 'noise'. We'll say, 'This person doesn't really fit the profile of what we're looking at. Maybe we should study someone else who fits better'. What we're saying with this study is 'We've got you'."

"There's been lots of good research on Lyme disease and we've got some good treatments now, but a lot of people are being left behind. We're hoping to narrow that gap."

Dr.Tim Salomons, professor of psychology, pain research, Queen's University, Kingston, Ontario

"I told my daughter the other day that living and dealing with colon cancer is so much easier than living with Lyme."

"Doctors believe you and they're willing to treat you [with cancer], whereas with Lyme disease it's so painful trying to find a doctor who is actually willing to listen to you and treat you."

"Most doctors are afraid. There's so much backlash against Lyme."

Julie Konzuk, environmental engineer, Brampton, Ontario

Fourteen years ago while on a job site in Virginia, environmental engineer Julie Konzuk contracted Lyme disease through tick bites. Usually in the spring months deer ticks, also called black-legged ticks, fasten themselves to any exposed flesh when people (or animals) walk through forests or tall grasses. Once a tick latches on it begins to engorge itself with its victim's blood over a period of time, and this can be overlooked by the afflicted person, feeling nothing, oblivious to the presence of the tick. At the point of entry before drawing blood, the tick injects an anesthetic; little wonder people are unaware they're bitten and the tiny tick is drawing blood. And at the same time conferring on its victim a miserable affliction that can entirely change their lives.

In that fourteen years since Ms.Konzuk was diagnosed with Lyme disease, as a result of her exposure to black-legged ticks infected with the bacteria that cause Lyme disease, she has been prescribed countless regimens of antibiotics, and she has tried naturopathic remedies, but the fatigue, headaches and muscle pain always return. Shortly after she was exposed to the tick bites she suffered searing headaches, face and joint pain, severe fatigue sapping her energy and "brain fog", leaving her forgetful of her normal vocabulary. It took a matter of weeks and she lost 10 kilograms of weight.

She underwent round after round of therapeutic antibiotics, resulting in brief temporary respite, but her symptoms always returned. Some doctors refused her treatment, citing the many she had already undergone. Simultaneously she also suffers from Stage 4 colon cancer, the treatment of which she is better able to accept than the frustration and pain of living with Lyme disease. It is precisely her experience, mirroring that of many other people who have contracted Lyme disease that the new research project headed by Dr.Salomons hopes to address.

 

Lyme-bacteria-carrying ticks slowly made their way from the south-eastern United States into Canada over the years. Now, in the Ottawa area the last five years has seen these ticks become well established. There were 22 recorded cases of Lyme disease in 2014; by 2019 that number had risen to 181, and last year the number reached 120. In some areas of the city, of the ticks collected, two-thirds tested positive for the Lyme-causing bacteria. The surveillance has been placed on temporary hold while all attention has been focused on the coronavirus pandemic. Strangely enough symptoms of both COVID-19 and Lyme overlap.

The research team from Queen's University partners with experts in genetics, antibiotic resistance, biochemistry, pain research, and environmental and ecological factors. Their focus is analyzing the collection of experiences people living with Lyme disease relate to them, in hopes they can more fully understand more about the various ways the disease can manifest its presence. "There may be one person whose symptoms perhaps seem atypical, but if you put them all together then maybe there's a bunch of people in the Ottawa area that have similar symptoms. 

 

"And people in Vancouver might have different symptoms. Once we have a lot of data, we can cluster those people together and have a basis for our other studies", explained Dr. Salomons.