Do you think you might have Lyme disease?
Do you remember being 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?
Your experience matters to us.
We think your experience can help us improve diagnosis and treatment of Lyme and other tick-borne diseases
Share your story:
New survey for May 2022:
If you took the 2020 survey you are still eligible and encouraged to take this survey.
The first part will take about half an hour and will ask you about some of your symptoms.
The second part will examine how your symptoms change over the course of a week.
The myLyme project is a new research partnership to eliminate mis-diagnosis of tick-borne diseases in Canada. A primary goal of this initiative is to better incorporate lived experiences of people affected by Lyme borreliosis and other tick-borne diseases.
Video about the project (4 minutes)
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Our core research team bring a broad range of expertise in chronic pain, inflammation, immunology, ecology, genetics, bioinformatics, biomedical engineering, knowledge translation and training, and patient-oriented research. We have been affected personally by tick-borne diseases and bring fresh new perspectives.
Lyme borreliosis and other 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 to create new connections across diverse islands of expertise. 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.
How is our approach different? Our research questions are designed by consultation with our interdisciplinary team to identify approaches that transcend traditional research boundaries to tackle the 'wicked problem' of Lyme disease. This approach is called 'Convergence Research'.
A1: At present, clinicians and scientists have gained a good understanding of “typical” Lyme disease cases, where the link to tick bite is clear, symptoms are typical, and there is a quick treatment and full recovery. But many people who don’t fit this profile are being left behind, their suffering amplified by lack of understanding from friends, family and their clinical care givers.
The myLyme project tries to understand the whole range of symptoms and to analyze these experiences using quantitative approaches that can help scientists to develop and test new hypotheses about the nature of Lyme and other tick-borne diseases. Quantitative methods can help to answer questions like: What symptoms are commonly observed together? What is the range of time courses of symptoms? How do genes (of ticks, microbes, and humans) affect a person’s symptoms? Do people from different parts of Canada experience different symptoms?
Q2: Why should I participate?
A2: The more experiences we can document, the more likely it is that we can broaden our understanding of Lyme and other tick-borne diseases to include everybody. A more inclusive framework can form the basis for changing how we study and treat Lyme disease going forward.
Q3: Can I participate in the 2021 myLyme survey if I also did the 2020 myLyme survey?
A3: Yes! We this is a separate survey from the one run in 2020. The 2021 survey has expanded to include a broader range of symptoms, and to better understand the emotional burden and daily rhythms of these symptoms.
Q4: How is myLyme connected with other Lyme disease research at Queen’s University?
A4: MyLyme is a new scientific venture, started in 2019 by new faculty at Queen’s University and other Canadian Universities. While individual members of our team have collaborations with others at Queen’s and across Canada examining Lyme disease, this project is 1) independent from other groups examining Lyme disease; 2) not bound by positions taken by any other group, either at Queen’s or elsewhere; and 3) bringing new scientific viewpoints and methods (e.g. machine learning, genomic sequencing) to the study of the disease. Our goal is to put the patient experience at the forefront of our research, and to help translate this experience into quantitative data that can help scientists develop new research on Lyme disease. We are guided by the belief that the symptoms that are reported to us are real, regardless of whether we currently have clear explanations or not.
Q5: What is the position of myLyme on Chronic Lyme Disease, IDSA and ILADS protocols, etc?
A5: One of the primary goals of the myLyme project is to capture the broadest possible picture of individuals living with symptoms of Lyme disease, without bias. This includes cases that are typical in terms of the symptom profile, time course and treatment response. But perhaps more importantly, we are interested in cases that don’t follow these typical patterns, symptom profiles that current clinical and basic science is struggling to understand.
As such, we take an agnostic approach to current Lyme controversies. If patients are reporting symptoms, acute or chronic, we believe these symptoms need to be taken seriously, and it is our aim to collect data that are robust enough to provide better explanations.
Q6: Where can we find the results of the study?
A6: The myLyme project is 100% committed to global standards of OPEN ACCESS and REPRODUCIBLE RESEARCH while prioritizing the privacy of individual participants. Links on myLyme.ca will track articles in the new media (See ‘Learn’ tab). Data and reproducible analysis will be archived in public repositories (e.g. GitHub, NCBI Genbank, Dryad Database). Manuscripts written for peer-reviewed journals will be posted on pre-print servers (e.g. biorXiv). These will be shared via links on myLyme.ca and on social media accounts.
The myLyme team is a group of mostly early-career researchers who bring fresh perspectives and outside expertise to the problem of Lyme and other tick-borne diseases.
My research team examines the evolutionary ecology and ecological genetics of invasive species. I will be looking at the tick microbiome to better understand tick-borne factors that may result in symptom variation in individuals bitten by ticks.
Our lab is interested in how viruses and hosts interact at the molecular level. As part of MyLyme, I want to understand the mechanisms that result in individuals responding differently to tick-borne pathogens.
My lab’s work investigates the genetic factors that determine disease risk and response to drug therapies. As part of MyLyme, I will be examining genetic factors that help determine how individuals will respond to tick bites.
Our research interests include the evaluation and assessment of educational programming, student assessment, and quality improvement program evaluation. Particular interests are in the areas of self-regulated learning, metacognition, and the measurement of clinical/critical thinking.
Our team is working to identify how the nervous and immune systems interact to cause Lyme Disease and its symptoms, with a focus on pain and cognition. We are also studying how circadian or 24-hour rhythms can change how these symptoms are felt.
Our research group uses biochemical and microbiological approaches to study antibiotics and antibiotic resistance mechanisms. We are interested in the mechanisms by which antibiotics target tick-associated microbes, with a particular focus on Borrelia spp.
My lab is interested in cognitive and emotional aspects of pain, and why some individuals are particularly vulnerable to long term disease. My role in MyLyme is examining individual differences in symptom profiles and how individuals cope with pain and other symptoms.
