A short history of CanLyme, by Jim Wilson

Thank you to everyone who helped promote awareness of The Quiet Epidemic global impact campaign by sharing CanLyme’s event on social media, watching the documentary, making a donation or participating in the live Q&A panel discussion. Enjoy this excerpt from Jim Wilson, patient voice and past president and founderof CanLyme, from the live Q&A panel discussion held online May 28 2023.

Jim, as the founder of CanLyme, you have a story that some, unfortunately may be able to relate to. Can you share that with us?   

In my situation, I went from being a very healthy athletic individual in 1991 to becoming quite disabled by the end of that year. I lost my ability to talk properly, think straight, to read properly, to retain information. Most systems of my body were affected and nobody had any idea what it was, so it took me several years to get a diagnosis of Lyme disease .Once I got the diagnosis, it was a struggle getting an appropriate level of treatment figured out for my situation. Once I did, I recovered I would say 95% of my health.  

Then, unfortunately in 2001 my daughter contracted Lyme disease.  I contracted mine on the east coast in Dartmouth, Nova Scotia and my daughter contracted it here in British Columbia where we had moved to, along with other kids in our community.  She wasn’t alone. 

This is what prompted me to look at the situation nationally in Canada. There were several groups provincially but I thought we needed at that time, a way to connect nationally so we could become a larger voice.  So, that was the impetus behind the creation of CanLyme, which was started in 2003.

I knew right from the get go that we had to come at this from a point of science, or else we were just going to be looked at as a bunch of talking heads. I approached various academics within our institutions in Canada who had anything to do with Lyme disease”. We started out of the gate with an impressive bunch and we progressed from there. My concern is of course how things progressed within the medical institution itself and what I saw as a very poor level of what they were calling evidence, being taken as evidence and directing our healthcare guidelines relative to tick-borne disease.  

That was an undertaking of mine that encouraged me to proceed forward and keep it going and here we are today, still struggling to get proper evidence based science into the curriculum of our medical schools and those of our nursing colleges and what not. But here we are and I think things are progressing and hopefully we are on the right track.