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Grappling with the status quo, and making change

Q&A panelist Janet Sperling is an entomologist and President of the Canadian Lyme Disease Foundation.

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 the highlights of Janet Sperling, entomologist and president of CanLyme, from the live Q&A panel discussion held online, May 28 2023. 

“The Quiet Epidemic gives voice to people suffering from long, late-stage Lyme disease and educates those who were unaware of the threat of tick-borne diseases. It highlights the need for better diagnostics and intensified research giving hope to millions of sufferers across the globe.”

Janet Sperling, President of CanLyme, 2023

Panel members

  • Janet Sperling Entomologist, President, CanLyme
  • Jim Wilson Past President and Founder, CanLyme
  • Dr. Sarah Keating, Anatomic Pathologist, CanLyme Board Member
  • Justin Wood Founder and CEO of Geneticks
  • Elizabeth May MP, current Leader of the Green Party of Canada
  • Q&A panel FAQ summary – The Quiet Epidemic
Hear the other panelists

“At CanLyme, we are really looking for a fundamental change and the fundamental change has to be backed up by science because that’s the only thing that’s going to last in the long term.”

Janet Sperling, President of CanLyme, 2023

Edited transcript

For those of us that watched The Quiet Epidemic, it was quite compelling.  What is the state of Lyme Disease in Canada and what should people know?

“The situation in Canada is more or less like it is in the United States. We have an increasing number of cases and since 2009, we are up to more than 17,000 cases of human Lyme disease in Canada. And, we have to remember that these are all underestimates.

Many family doctors right now just feel caught. They know their patients are sick, they seriously suspect that they have Lyme disease but they are being discouraged from actually giving the diagnosis because they don’t have a positive blood test. This makes it very, very frustrating for the family doctors who are trying to help their patients. Sometimes the patients still have to go to the US or Europe to get treatment and we know that has to change.

One of the things we (CanLyme) recognize is that there is a bias towards the status quo and we know that change is uncomfortable but in this case it really is necessary. I think one of the best ways to deal with this bias for the status quo is just to admit that it exists. “

Where is the hope? What is the current state of Lyme disease in Canada?

First of all, there is a lot more visibility about Lyme disease and this visibility is in the mainstream media. We now have people like National Geographic and Canadian Geographic backing up what we have been saying for decades.

Another thing in our favor is long-Covid and we have to be careful that we don’t let Lyme disease get swept under the carpet as ‘long Covid’ but we do realize that there’s a lot of  cross-over. As we learn more about long-Covid a lot of the lessons can be applied to long-Lyme disease. 

We do have at this point, an opportunity in Quebec where we have one of the best Lyme treating doctors in Canada working at a clinic, he is able to collect the data and when he gets his data we’re going to be able to apply that across Canada. We do finally have an opportunity to demonstrate that people who are treated with longer-term antibiotics, really do get better. 

Another thing is that the techniques in molecular biology are just galloping forward. If I say ‘PCR’, we now have to say ‘what kind of PCR are you doing?’ Now, we are not constrained to looking for very specific things. We can look at all of the pathogens that are in any given person. 

The fourth really good thing is that we do have a number of really solid (Lyme) groups in Canada and we’re (CanLyme) working with them. For example, we know the Magnotta Foundation. They are doing a lot of really good work. 

We (CanLyme) also have excellent communication with groups in the US and in Europe and that means that we are now getting a diversity of approaches. So instead of just relying on the Americans, we can have a diversity of viewpoints. I (Janet) can say that in the 15 years that I’ve been involved, we’ve never had so many independent indicators that things are actually getting better. We have finally arrived at a time, we are in a place and we have a group of people who really can bring this forward.

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