A new collaboration to help eliminate misdiagnosis of tick-borne diseases in Canada
Patient Surveys
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
Patient Surveys:
NOTE: Our patient survey is not currently active. We are grateful to the hundreds of respondents and will will continue to update this website with new results and new projects. In 2020-2021 and 2022-2024 we conducted annonymous surveys to better understand patient symptoms and what they can tell us about Lyme disease. Details about these surveys and some preliminary results are presented below. We will continue to update as new results are analyzed.
Press Coverage
2023
CBC The Current interview about tick invasions and detecting pathogens
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)
myLyme Webinar
Survey Instructional Video
Note that this survey is no longer active, but this video is presented for archival purposes.
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.
Contact us
If you have other questions please use the form below or email webmaster@mylyme.ca
Tick Testing
(NEW for 2024) First public access to comprehensive tick testing. Starting May 1, 2024, animal care practitioners across Ontario will have access to Canada's first Bacterial Amplicon Tick Test (BATT), a new way to detect tick-borne pathogens by screening for all bacteria and genetic variants, all at once.
How is BATT different from other tests?
Antigen tests are based on an immune response that can take weeks manifest. False-negative results and delays in treatment can have adverse health outcomes.
The Bacterial Amplicon Tick Test (BATT) takes advantage of modern breakthroughs in genomics and machine learning. Commercially available tests are targeted, meaning that they typically detect only one pathogen or genetic variant at a time. Our new BATT assay screens for all known bacteria and their genetic variants. It can even detect new bacteria and genetic variants that are not yet known to be established in Canada!
Advantages of BATT
Amplicon Test
Targeted Test
Each test detects all bacteria, all at once. This includes bacteria known in Canada and new bacteria invading from the United States and other countries
Each test is designed to detect one specific pathogen
Individual genetic variants are identified
Cannot distinguish variants
Polymicrobial/polyvariant infections can be detected in a single test
A separate test is required for each target
Comprehensive report generated for each sample
Presence or absence score (or inconclusive)
Disadvantages of BATT
Amplicon Test
Targeted Test
Requires trained staff using specialized equipment and advanced data analytics
Minimal expertise and equipment needed
Can take up to 24 hours from sample to result
Typical range of 1 to 24 hours from sample to result
Background
Tick-borne diseases are spreading as a result of biological invasions and climate change, posing a growing threat to Canadians. There are many tick-borne pathogens in the northern United States and worldwide that could establish in Canada in next few decades. The history of Lyme disease provides important lessons we can use to avoid similar mistakes with other tick-borne diseases in Canada.
Thousands of people have suffered from Lyme disease without receiving a proper diagnosis. The exact number is hard to determine because Lyme disease wasn’t discovered until the 1970s, even though it has existed in North America and Europe for hundreds or thousands of years. Even today, there is good evidence that Lyme disease is under-diagnosed in many parts of Canada. Errors in diagnosis and treatment can lead to severe, debilitating symptoms including long-term fatigue, pain, brain fog, heart problems, and other malaise. On the other hand, over-prescription of antibiotics in non-infected patients can drive the evolution of resistant bacteria that pose an even bigger threat to public health. There are many reasons that Lyme patients have been misdiagnosed and mistreated, including the following:
Definitions -- Four decades since the discovery of Borrelia burgdorferi there is still ongoing confusion and debate about how Lyme disease should be defined and diagnosed.
Discovery lag -- It took a lot of research effort to isolate and culture Borrelia burgdorferi so that it could be studied, and this only came after centuries of human infections. Research on Lyme disease started only after an unusually large number of children with childhood arthritis was reported in Lyme, Connecticut.
Practitioner knowledge -- When pathogens spread to new areas, health care professionals in those areas can be untrained and unfamiliar with the symptoms.
Data deficiency -- Surveillance is expensive and it is difficult to find pathogens when they are rare. Borrelia burgdorferi can be present and infect individuals long before it is detected in the region.
These lessons from Lyme disease in Canada have inspired us to ask "What else are we missing?" Current methods for surveillance and diagnosis are targeted to a relatively small number of pathogens, and are generally not designed to detect new and emerging pathogens.
What else are we missing?
The myLyme.ca Tick Metagenome Project (TMP) investigates the genetics of ticks and their associated viruses, bacteria, and parasites of ticks in Canada and abroad. To do this, we leverage and develop new technologies that can help us to identify and track new and rare tick-borne pathogens. These other pathogens could be responsible for undiagnosed diseases in humans and domestic animals across Canada. As part of this ongoing research effort, we developed the Bacterial Amplicon Tick Test (BATT), which uses High-Throughput Sequencing (HTS) technology, also known as Next-Generation Sequencing (NGS). We use HTS to identify millions of bacterial DNA sequences in each tick, which we analyze with customized bioinformatics and machine learning algorithms to detect known pathogens, potential pathogens, other bacteria, and genetic variants.
As far aw we know, BATT is the only test available in Canada that can detect new and emerging pathogens.
Frequently Asked Questions (FAQ)
How does this new BATT test work?
Briefly, we use a method called amplicon sequencing with High-Throughput Sequencing (HTS) chemistry and machine learning algorithms to survey all of the bacteria in a particular sample. Our customized chemistry provides millions of DNA sequences that feed into our machine learning and other bioinformatics algorithms, which identify known pathogens, suspected pathogens, and other bacteria. Because we sequence DNA directly, we are able to identify genetic variants that might play important roles in undiagnosed disease.
More technical details are available in two of our open-access research articles. First, this article on amplicon sequencing in ticks provides details on some of the chemistry and analysis. In addtion, this article on COVID variants explains how we use phylogenetics to identify known and new variants. There is also more research information at the Colautti Lab website: EcoEvoGeno.org
How is BATT different?
Conventional testing methods only detect a specific DNA sequence or protein antigen. They are relatively sensitive and inexpensive, but they cannot detect new and emerging pathogens or genetic variants of known pathogens. As a result, tick-borne diseases can go undiagnosed with adverse health outcomes, especially when symptoms are non-specific (e.g., fatigue, aches and pains, memory loss).
How can I access this new BATT test?
As of May 2024, we are partnering with animal care professionals across Ontario. If you are not an animal care professional, you can still click the 'sign up' button above to tell us why you are interested.
How much does the BATT test cost?
The cost of our Bacterial Amplicon Tick Test (BATT) is similar to running a few commercial kits (targeted tests) for common pathogens. Even though we can detect a much broader range of pathogens and pathogen variants, the costs are similar.
How do these tests differ?
There are many different strategies and technologies for testing pathogens. We can generalize by classifying them into three categories based on their specificity.
Type I Targeted Tests are the method used by current commercial tests. Each pathogen or pathogen variant requires a separate test to be developed, using one of two detection methods:
Detect the pathogen, typically by targeting a DNA, RNA, or protein sequence that is specific to the pathogen or variant of interest.
Detect antibodies produced by the immune response of an infected human or animal host.
Each test is expensive to develop, but once validated they are generally sensitive, fast, and relatively inexpensive to administer. The main limitation is that each test only detects a single pathogen, so the cost of testing increases with the number of pathogens. Tests may produce inconclusive results against different genetic variants of the same pathogen, and targeted tests cannot detect new pathogens.
Type II Amplicon Tests apply modern genome sequencing technology to screen a broader group of organisms, rather than specific targets. For example, our Bacterial Amplicon Tick Test (BATT) is based on research reported in this open-access research article describing the amplicon sequencing method and its ability to detect new and emerging pathogens as well as known pathogens including Borrelia, Anaplasma, Ehrlichia, Rickettsia, and Francisella. Our BATT assay can also detect new pathogen variants using data analysis tools we developed during COVID and reported in this open-access research article.
More recently, we've added new innovations in DNA chemistry and machine learning to increase test sensitivity and test accuracy, and to make BATT cost-competitive with commercially available targeted tests. By testing all bacteria in a sample, our BATT assay can detect any bacterial pathogens, pathogen variants, and polymicrobial/polyvariant infections. This includes not only pathogens already known in Canada, but also new and emerging diseases. These results are impossible to achieve with current (Type I) targeted testing.
Overall, Type II tests offer a big improvement in detection and scale, but we think we can do even better.
Type III Untargeted Tests also use genome sequencing and bioinformatics but are theoretically capable of detecting all bacteria, viruses, and parasites in a sample. However, Type III tests are currently cost-prohibitive. We are actively researching and testing new methods to increase sensitivity and reduce the costs.
Aren't there commercial tests that detect multiple pathogens?
Not exactly, these 'multi-pathogen' tests are just a combination of targeted tests. Typically, they only target 2 to 4 pathogens and do not score well against certain variants.
What are 'tick-borne pathogens'?
These are pathogens that are transmitted from ticks to humans and other animals. The pathogen is a microbe that causes the disease. For example, Lyme disease is caused by a bacterium called Borrelia burgdorferi but it is just one of many bacteria, viruses, and parasites that can be transmitted by ticks. The most common examples of tick-borne diseases in Ontario are Lyme disease, Anaplasmosis, Babesiosis, and Powassan Virus, but there are many more known tick-borne diseases in the United States and worldwide. New tick species with new diseases are expected to spread into Canada in the near future.
What are 'pathogen variants'?
You may have heard of COVID variants like alpha, delta, omicron, and even some omicron sub-variants. These are just different strains or versions of the SARS-CoV-2 virus that have slightly different genome sequences. These differences are small, typically less than 1% of the genome (or less for sub-variants), but these small differences can translate to big difference in transmission rates and symptoms. Variants of tick-borne pathogens are similar. Different pathogens -- for example Borrelia burgdorferi and Anaplasma phagocytophilum -- have very different genomes that code for different cell structures and biological processes. But there are also different variants of each pathogen, defined by slight genetic differences. Some of these genetic differences can translate to very different health effects, just as COVID variants have different symptoms and transmission dynamics.
Which pathogens/variants do you test for?
Our Bacterial Amplicon Tick Test (BATT) currently screens all bacteria, all at once. We can also detect many (but not all) of the variants of each pathogen. This is only possible through our use of cutting-edge genome sequencing and machine learning technologies. In contrast, conventional (Targeted Tests) only screen for one pathogen at a time. Bacteria of particular concern include:
Pathogen
Disease
Main Tick Vector
Borrelia burgdorferi
Lyme disease
Ixodes ticks
Borrelia miyamotoi
tick-borne relapsing fever
Ixodes ticks
Anaplasma phagocytophilum
anaplasmosis
Ixodes ticks
Francisella tularensis
tularemia
Dermacentor ticks
Ehrlichia
ehrlichiosis
Ixodes and Dermacentor ticks
Rickettsia rickettsii
Rocky Mountain spotted fever
Dermacentor ticks
The BATT can detect these pathogens, different genetic variants of these pathogens, and other bacteria in ticks.
Aren't there vaccines available?
Yes, there are some vaccines available for some pathogens. However, vaccination against one pathogen will not provide protection against other, unrelated pathogens. As with COVID, some vaccines may be less effective against certain pathogen variants.
Can you test blood, tissue, or other samples from humans or animals?
Not yet, but see below (What is new/next for testing?). There are three main resons to start with ticks from pets:
Pets are at higher risk than humans. They are exposed to many more ticks and tick bites than humans, and they don’t take precautions like humans do. There are also diseases that are specific to pets.
The much larger sample size we can get from pets provide an important proof-of-principle for pathogen detection, which would be too expensive to do with human studies. However, showing how it can work for pets is an important step towards human trials.
Ticks on pets represent a good sample of ticks that people are exposed to. Health care providers can be alerted when new pathogens are found in a particular region, so there is still a benefit to public health even if we are not (yet) testing humans directly
What is new/next for testing?
Here is a brief overview of our research plan. Note that these all relate to Type II Amplicon Tests, but we will also continue to research methods to reduce the cost of Type III Untargeted Tests.
(NEW for 2024) Phase I: Pilot Study. Starting May 1, 2024, veterinarian clinics across Ontario can access Type II comprehensive tests, in partnership with the myLyme.ca and the Colautti Lab at Queen's University, and supported by funding from the Ontario Government, The Canadian Institutes of Health Research (FRN 192227), and Health Canada's Healthy Environments and Consumer Safety Branch.
Phase II: Commercial Kits. Our next goal is to make these tests commercially available to the public through private partnership.
Phase III: Domestic Animals. Longer-term, we hope to move beyond ticks to test for infections in biosamples of pets and other domestic animals
Phase IV: Human Assays. If phase III is successful, we plan to explore the feasibility of testing human biosamples.
Research Team
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'.
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.
