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Have you ever been bitten by a tick?
Did you get sick?
Were your symptoms severe or mild?
Did you recover quickly or are you still fighting years later?
Did you get the treatment you needed?

Regardless of outcome, your experience matters to us.

Share your story:

Add your story to our annonymous database to help us improve diagnosis and treatment of Lyme and other tick-borne diseases.

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We are reaching out to request your input or involvement in a new research partnership on Lyme Disease in Canada. A primary component of this initiative is to incorporate lived experiences of people affected by Lyme borreliosis and other tick-borne diseases – a project we are calling ‘myLyme’. The myLyme project is a collaboration between citizens and scientists with a singular goal of eliminating misdiagnosis and improving treatment of all tick-borne diseases in Canada.

Our core research team is a highly interdisciplinary group of early-career researchers who are already recognized internationally as emerging leaders in their fields. Most of us are not experts on Lyme borreliosis per se, but some of us have been affected personally by tick-borne diseases and all of us bring fresh new perspectives. We also bring a broad range of expertise, including internationally recognized research in chronic pain, inflammation, immunology, ecology, genetics, bioinformatics, biomedical engineering, knowledge translation and training, and patient-oriented research.

Lyme and tick-borne diseases are a growing problem that requires all hands on deck, yet the valuable experiences of many patients are too often dismissed or ignored. As a transdisciplinary research group, we recognize the importance of breaking down traditional research silos and creating new connections across diverse islands of expertise. We understand that incorporating personal experiences doesn’t compromise scientific rigor but rather clarifies research gaps that are most relevant to human health and quality of life. We are excited about the possibility of creating a shared space for diverse approaches to Lyme disease research and advocacy and we hope you will consider joining our conversation.

As a starting point we have listed below several research areas related to tick-borne diseases. We would be most grateful to hear your thoughts on any research priorities we have missed, and which research priorities are most important to you. We also hope you will consider taking a more active role in this collaboration. In the near future we will launch the myLyme.ca website where patients and scientists can share their stories. We hope to hear from you.

  1. Doctor education, particularly in the context of rapidly changing tick and pathogen distributions
  2. Unreported and under-appreciated pathogens besides Lyme-causing Borrelia, and effects of multiple simultaneous infections (co-infections)
  3. Better field tracking of all potential pathogens (bacterial, viral, protozoan)
  4. Better tests for all pathogens present in an infection, and tests for co-infections
  5. Better understanding of potential for chronic, non-lethal effects of tick pathogens (e.g. cancers, chronic pain, fibromyalgia
  6. New and better therapeutic targets for chronic symptoms
  7. Better linking patient symptoms to specific diseases (e.g. is Lyme disease one broad disease with many symptoms or an amalgamation of more specific diseases)
  8. Long-term persistence of tick-borne pathogens following antibiotic treatment
  9. Pathogens abundance in tick salivary glands vs guts and implications for infection times/rates
  10. New therapeutic targets
  11. Understanding patient genetic, epigenetic and environmental predispositions to different disease symptoms
  12. The potential for non-tick vector disease transmission

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