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Lyme advocates say Canada offers “toxic tokenism” to patients

Campers stand at the edge of the water at sunset watching the stars come out, with the CanLyme logo floating in the foreground.

The Canadian government recently announced new investment in Lyme disease research. However, Canadian Lyme advocates fear that the patient voice will be excluded from the decision-making process. In the following article, the Canadian Lyme Consortium (CLC)–made up of advocates, patients, researchers and practitioners–offers background and context.

By Vett Lloyd, PhD; Liz Zubek, MD, CCFP FCFP; Sue Faber and Jennifer Kravis, co-founders, LymeHope; Janet Sperling, CanLyme; Linda Kelso, Ontario Lyme Alliance.

The Canadian Federal Government announced the first major financial investment into Lyme disease research on October 15, 2018 – 4 million dollars designated to support the formation of a Lyme disease research network. Yet the patient community in Canada is not celebrating. Why not?

The answer is that there are a number of very significant problems with how this money is being used to try to control Lyme disease research. The continued exclusion of the Lyme disease patient community from playing more than a token role is the key issue.

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  1. Could I please meet with someone from Canlyme to address my case…..
    I am a mom with a son suffering with Lyme disease. I desperately need help with the recent cost of sending my son to Germany for treatment of Lyme disease.
    My son hasn’t worked in 5 yrs due to being too ill from this disease. I feel the stress and the financial cost of this disease …..is distroying our family.
    The cost of testing, remedies and treatment has been enormous. And it’s been all out of our pocket…!!!
    Not only that he couldn’t work, he lost his family ……..had to leave behind 4 small children, 6yr old, 3yr old & a twin 2yrs old …..back in GP, Ab in 2014 and return home to nl with his parents …….. We helped him keep in touch with the children…. Pd to fly the kids home 2summers..
    .And because his illness was not yet diagonised, he was not able to tap into workmens, or any insurances when he became too ill to work. He was working in the forest in BC & AB around the time he became severely ill.
    Not easy to reach out for financial help but I am desperate…! The cost of trying to combat Lyme disease should & need to be there for those suffering.

  2. My daughter is 24 years old she had a false negative in high school after her tick bite but she was getting worse. She is now 95 pounds weak and a mess. This is not how anyone should live.
    People think she’s crazy and it’s all in her head.
    We finally tested positive in Colorado. Her Head MRI came back with hardening of the arteries, of an old person. The Canadian internist said to her go get treatment in the states since that lab diagnosed you. She can’t get disability because her test was false. It’s like ignoring a persons cancer saying it’s all in their mind but if still think your sick go to another country. That is not our protocol. Free health care? Honestly. That’s BS. Put that money into proper testing, when a person is infected years later. Then a treatment plan. Or open a lyme clinic in Canada, subsidies they families who have to get treatment there. Why do we have to go to Germany, Panama, California etc. We pay so many taxes in this country for our health care. Event one deserves it!

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