Ticks Creep Into Canada, Bringing Lyme Disease (and Confusion) With Them

Reported Lyme cases in Canada increased more than six-fold between 2009 and 2016, but many patients are still struggling to get diagnosed and treated.

Joanne Seiff, a resident of Manitoba, contracted Lyme disease a couple of years ago but didn’t remember pulling off the tick that bit her; nor did she have the telltale bullseye rash of a tick bite. Her husband Jeff Marcus, who grew up in New York’s Hudson Valley, about an hour and a half from the eponymous town of Lyme, Connecticut, recognized her symptoms immediately because Lyme disease was common there.

“Even though we had been telling people for months that she had Lyme disease, … we were seeing specialist after specialist, and getting the same run-around.”

Canadian doctors, however, were not convinced.

“Even though we had been telling people for months that she had Lyme disease and that all she needed was about four weeks of antibiotics, we were seeing specialist after specialist, and getting the same run-around,” Marcus says. “She was getting sicker and sicker.” At their wits’ end, they paid thousands of dollars for testing at a certified lab in the United States, which finally convinced a Canadian doctor to treat her.

Ticks carried by migratory birds have been raining down on Canada for years. But it’s only in the last 10 to 15 years, amid a changing climate and the creation of new habitats in the north, that populations of deer ticks (Ixodes scapularis) have been able to establish a permanent beachhead in Canada. They have brought with them a variety of tick-borne diseases, the most common of which is Lyme.


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According to Canada’s Lyme surveillance efforts, the number of reported Lyme cases increased more than six-fold from 2009 (144 reported cases) to 2016 (987 reported cases). And while public awareness of the disease is increasing in Canada as caseloads surge, many patients still struggle to get diagnosed and treated — enough so that many of them have been driven to seek help beyond the country’s borders, or even from alternative medicine practitioners with questionable expertise but in some cases, a more sympathetic ear.

“There are people who are really suffering,” says Tara Moriarty, an associate professor in the Faculty of Dentistry at the University of Toronto who studies the dissemination of blood-borne pathogens. That suffering, she says, “has made a lot of people feel very marginalized.”


Of course, diagnosing Lyme is far from foolproof, no matter where the bacterium that causes it, Borrelia burgdorferi, has surfaced. As many Americans already know — particularly those in the tick-infested Northeast — diagnosis of Lyme disease is most straightforward when patients present with a signature bullseye rash at the site of the bite. If the tick and/or rash are missing, which can happen in as many as half of all cases, diagnostic testing for Lyme disease in Canadian government labs follows the guidelines from the Infectious Diseases Society of America, which recommends a two-tiered test developed by the U.S. Centers for Disease Control and Prevention. This involves an initial test to determine if the body has mounted an immune response and is producing antibodies to Borrelia burgdorferi. If the test is positive, the second test seeks to confirm the infection by identifying proteins specific to Borrelia burgdorferi.

The tests, however, are imperfect. It can take several weeks for the body to produce antibodies to Lyme, for example, and if the test is administered too early, it will produce a false negative. Similarly, there are a variety of geographically distinct strains of Borrelia, which can sometimes produce equivocal western blot results.

Complicating matters further, ticks often carry more than one pathogen, such as the bacterium anaplasma or the malaria-like parasite babesia, which are not detected with the standard tests for Lyme. These pathogens can produce co-infections with Lyme. Kateryn Rochon, an assistant professor at the University of Manitoba who has been sampling the expanding range of ticks throughout the province for the last three years, and her collaborator, Jeff Marcus, husband of Joanne Seiff and an associate professor of biology at the university, estimate that 65 percent of the deer ticks in Manitoba are carrying either Lyme disease and/or one of the other two commensal human pathogens.

“There are people that are very sick, and there are people that are exploiting them.”

This all makes for a muddy diagnostic regimen even in regions with a long history of Lyme, but with Canada’s exposure still comparatively new, many doctors may not even suspect Lyme in an ailing patient. And even when they do, there are often systemic and cultural barriers to testing, according to Jim Wilson, the founder of the Canadian Lyme Disease Foundation, who contracted Lyme disease many years ago and was very sick for several years before he found effective treatment. After his daughter contracted Lyme in 2001, he decided to found the organization to raise awareness of the issue.

Many medical doctors feel caught in a Catch-22, Wilson suggested — simultaneously discouraged from making a diagnosis on clinical symptoms alone, and limited to laboratory tests that are often inconclusive. Doctors that diagnose and treat Lyme disease effectively — through a mixture of educated clinical diagnosis and testing — “have been policed out of business,” Wilson says, leaving them hesitant to diagnose and treat the disease at all. This leaves many patients with little recourse but to turn elsewhere — including seeking diagnosis via for-profit labs the U.S.

Moriarty at the University of Toronto thinks that’s a mistake, arguing that the lack of regulation at such labs leaves the door open for errors and even exploitation. The commercial labs in the U.S. aren’t as tightly regulated as the government labs in Canada, she argues, and many for-profit labs “diagnose Lyme disease in people who are not infected as often as they diagnose it in people who are.” A review of studies published in the Canadian Medical Association Journal in 2015 supported this assertion, showing that some analyses of U.S. specialty labs had false-positive rates ranging from 2.5 percent to as high as 25 percent. One lab showed false-positives in 57 percent of samples taken from a control group known to be Lyme-free.

Many Canadian patients are also turning to naturopathic physicians for help. Such practitioners are not restricted to government-approved laboratory tests, and they have more freedom to clinically diagnose and treat Lyme. The problem is — with the exception of British Columbia, naturopathic physicians are not able to prescribe the only scientifically proven treatment for addressing Lyme: a long course of antibiotics.

Not surprisingly, given his prescription-writing ability, naturopathic physician Eric Chan at the Pangaea Clinic of Naturopathic Medicine in British Columbia sees patients from all over Canada, and he has developed a practice focus in treating patients with chronic Lyme. “Not all infections are really simple,” Chan says, adding that patients with chronic Lyme may need antibiotic treatment to get rid of the infection, as well as treatment for the physiological symptoms of chronic stress, poor sleep, and pain. “When we take this multi-faceted approach, then patients start to feel better,” he says.

In conjunction with — or sometimes in lieu of — antibiotics, Chan uses a variety of approaches to treat Lyme, including ozone therapy by “major autohemotherapy”, that is, by withdrawing the patient’s blood, adding ozone to it, and then reinjecting it into the patient. According to Chan’s website, ozone therapy stimulates the immune system to clear the infection. Other naturopathic treatments offered for Lyme “involve sauna therapy with oxygen, IV vitamin C, IV glutathione for flares, DMSA and EDTA chelation, and oral chlorella, cilantro, garlic,” according to the site.

But Moriarty and other experts are quick to note that, aside from treatments with antibiotics, much of this is bunkum. “There is absolutely no evidence that any naturopathic treatment does anything to help Lyme disease. It is absolutely costly. There is zero evidence,” Moriarty says. “And anyone who promises or markets a treatment that is naturopathic for this disease is in my belief acting unethically.

“There are people that are very sick,” she adds, “and there are people that are exploiting them.”


All of this leaves many Canadian patients and their doctors on uncertain footing when it comes to diagnosing and treating a growing problem. Last year, the Canadian government pledged an additional $3 million ($4 million Canadian) to fund more Lyme research, and in response to that, Moriarty is co-leading a grant proposal application for a network of approximately 50 scientists and physicians across Canada to be submitted to the Canadian Institutes of Health Research and the Public Health Agency of Canada in March 2018. The multi-pronged proposal includes work to improve diagnostics, to conduct surveillance, to educate general practitioners about Lyme, and to build a biobank of patient samples.

“Until we can actually test different ideas and figure out if they are right or wrong, all guidelines have to be based on evidence.”

“Until we can actually test different ideas and figure out if they are right or wrong, all guidelines have to be based on evidence and what we know because otherwise they wouldn’t be guidelines,” Moriarty says.

“It’s our job to be professionally skeptical,” she adds.

Of course, some patients and advocates argue that the current guidelines are not based on the best evidence and that they are beholden to powerful interests. Disability insurance companies in Canada often claim that chronic Lyme disease does not exist, for example, so that they don’t have to pay disability claims. Such companies sometimes hire infectious disease doctors as experts to testify in court to deny claims, Wilson explains.

At the same time, many insurance companies deny life insurance to potential clients who have had a Lyme disease diagnosis, says Janet Sperling, a Lyme disease researcher at University of Alberta. Sperling — who was a stay-at-home mother when her son contracted Lyme disease and doctors couldn’t diagnose or treat him — suggests that such inconsistencies show that Lyme disease is “becoming politicized.” The experience with her son prompted her to pursue a Ph.D. at the University of Alberta so she could help start untangling Canada’s growing Lyme challenge. She’s currently investigating tick-borne pathogens that often co-occur with Lyme. “If it’s not Lyme disease, then what is it?” she asks.

Although the pace of progress has been glacial in the face of this rapidly spreading infectious disease, there is potential hope on the not-too-distant horizon: The French pharmaceutical company Valneva is currently working to develop a Lyme vaccine. Such a vaccine previously existed in the U.S., where it became FDA approved in 1998. But after complaints about side effects that led to lawsuits and falling vaccine sales, it was withdrawn in 2002. But a new and better vaccine could play a major role in controlling Lyme.

“If it works and it is safe, the Canadian government should be putting a lot of money into getting this out there,” Moriarty says, “because I think that’s going to be single-handedly more effective than anything else.”

In the meantime, there are no immediate solutions. But Marcus, witnessing the Canadian medical and public health system struggling to keep up with this emerging infectious disease, feels a sense of déjà vu.

“I grew up about an hour and a half from Lyme, Connecticut, in the 1980s when the Lyme epidemic was being recognized, and I remember the people who were sick for years and years without treatment because they weren’t showing symptoms that people first recognized as being associated with Lyme,” he says. “And it’s happening again in Canada, as the bacteria and the ticks are establishing themselves here.”


Viviane Callier is a San Antonio-based science writer covering biology, medicine, and STEM workforce and training issues. Her work has appeared in Science, Nature, Scientific American, Quanta, Wired.com, Smithsonian.com, The Atlantic.com, and National Geographic News, among other publications.

Top visual: Undark; Base image: E+ via Getty
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64 comments / Join the Discussion

    The amount of expertise of hundred of thousands thinking, speaking observing, reading and sharing guinea-pigs, us,for more than 40 years is astounding. Some of us are Drs, many health professionals, a large number are scientists a large number have college education. Just to oppose the medical system one have to be exceptionally discerning and capable. This direct guinea-pig expertise shared is I think thousand times more relevant than the venal organizations pseudo scientific denying based on one third of direct evidence, one third of secondary observations and on third of biased expert opinions. This intelligent guinea-pig expertise is also documented by thousands of scientific studies. Who and in pursuing what objective will organize this big data in a powerful information?

    Reply

    British Columbia naturopaths like Dr. Chan and others literally SAVED MY LIFE from Lyme Disease. I appreciate the awareness raising you are doing about Lyme, but the way you talk about naturopaths really pisses me off! I was brought back from being completely disabled, both physically and mentally, to being an independent, mostly functional human being again. I am still in recovery but my life is no longer in danger. I had NO help from medical doctors. In fact over the past 25 years they contributed to my illness by misdiagnosing me, treating me with the wrong medications, dismissing me as mentally ill/hypochondriac when my issues had physiological causes, refusing care and abusing me, biasing specialists against me before I even got to see them, and even lying about significant test results. The only reason I got well is because I walked away from my medical doctors and went into the care of Naturopathic doctors. Naturopathic doctors base their treatments on science and take very good care of their patients, especially Lyme literate naturopaths who are constantly under the microscope and tons of pressure to get it right. So stop knocking their good work and instead start collaborating. They have a lot of information to offer and could really benefit the Canadian research process.

    Reply

    Hi Caro S,

    Unfortunately, there really is no clinically useful scientific evidence supporting the safety and efficacy of Lyme disease treatment approaches other than antibiotics. This doesn’t discount the importance of someone who takes the time to address a patient’s experience of their illness–people with a complex disease experience need this. And I completely agree that we need well-researched safe and effective treatment approaches in addition to antibiotics in some patients. Naturopaths need to do peer-reviewed research and well-controlled clinical trials to provide evidence for the safety and efficacy of the Lyme disease treatments they market. And absolutely, if research and trial results support the safety and efficacy of these treatments, then it is completely legitimate to market them as treatments, because marketing claims will be supported by evidence. If a practitioner provides support that is safe, & that patients can afford and feel helps them, then there’s no harm. However, I’m concerned about any professional who would market treatments as proven or effective when there is actually no evidence to support this–this is deceptive. If a practitioner doesn’t make claims to be able to treat Lyme disease, but does offer to try approaches that a patient may find helpful, then there is no concern about this. It’s explicit claims to be able to treat the disease that are problematic. Caro S, if you or others have suggestions about research we could focus on, please let me know. We need specific, constructive suggestions from you and others about how our proposed research could help people who currently have Lyme disease and Canadians at risk of contracting this disease.

    Reply

    Unfortunately, I was one of those that slipped through undiagnosed and untreated for many years while symptoms grew in magnitude. I never saw a rash, or an attached tick for that matter. However, by the time I was clinically diagnosed in 2011 I had over 40 symptoms and all systems were affected. My Canadian Lyme Literate MD treated me until he closed his practice in early 2013 due to stress brought on by constant intervention by the College of Physicians and Surgeons for his treatment protocol. During my treatment my symptoms subsided considerably such that my GP said she saw the improvement but could not continue my LLMD’s treatment because my ELISA had been negative.

    Since 2013 I have sought the help of several complementary and alternative health care practitioners in order to be able to live a fairly reasonable life, albeit with symptoms that remain and come and go at will. My husband and two children have multiple symptoms that fit into a possible Lyme diagnosis but their ELISA’s have come back negative as well. They all have come to just live with their symptoms. This should not be happening in Canada, or anywhere!

    My LLMD had diagnosed me with Bartonella, first and foremost. Lyme, and possibly Babesiosis, was secondary. In 2017, research by Dalhousie University in Nova Scotia found that 70 percent of ticks tested (both blacklegged and dog) carried Bartonella. Approx. 30% of the ticks also carried Rickettsia. To date, this information is not available on any website that I have reviewed. Why?

    There is also research to suggest that more and more ticks are carrying more than one disease/pathogen. How would a Lyme vaccine work if other things were transmitted? Is a vaccine even feasible?

    I am presently reading the book “Conquering Lyme Disease” by Drs. Fallon and Sotsky of the Columbia University Medical Center. ALL Doctors and researchers should read this book. Chapter 14 is entitled “The Good News Emerging From Lyme Disease Research”. The following are the section titles:

    “Recognition that Borrelia Persist”
    “Repeated Antibiotics Can Help”
    “Persister Borrelia Burgdorferi Spirochetes May Necessitate Different Treatment Approaches”
    “Recognition that Persistent Symptoms After Treatment for Lyme Disease Have Been Associated with Objective Biologic Findings”
    “Recognition that Lyme Disease Infection May Lead to Abnormally Active Neural Pathways”
    “‘Omics Research’ Can Help Improve Diagnostics and Clarify Pathophysiology”
    “Idenfication of a New Tick-Borne Infection Causing Symptoms Similar to Lyme Disease”
    “New Prevention Strategies”

    This book has almost 30 pages of References and should be included as necessary reading. As more and more books are being written about Lyme and tick borne diseases, the pieces of the puzzle are finally being connected. However, unless you take the time to actually sit down and read these books, you are left unaware. In many cases, Lyme patients have spent the time to read new and up-to-date research, books, articles, etc., etc., etc., and their knowledge should not be taken lightly. Just read some of the comments above and you will realize that many of those impacted by Lyme and tick borne diseases are well read and very knowledgeable. Many are also Nurses, Doctors, Naturopaths, Lawyers, Teachers, Biologists, Politicians, and so much more. Their knowledge should be fully utilized.

    On a final note, I also read Dr. Neil Spector’s book “Gone in a Heartbeat”. This is another book that ALL in the medical field should read. He provides invaluable insight into both sides of the issue. That of a patient and that of a Doctor. I am also looking forward to Mary Beth Pfeiffer’s book “Lyme: The First Epidemic of Climate Change” which comes out in April.

    As this issue is basically worldwide, we should all be working together in an effort to reduce the number of new cases, and to ensure that a diagnosis and adequate treatment can be undertaken quickly. As well, those that are already suffering need compassion and help.

    Lyme is not rare, hard to get and easy to treat. Lyme is also not just a rash and flu-like symptoms. Finally, Lyme is not the only thing we need to worry about so a change in name and dialogue is now necessary.

    Reply

    Hi Donna,

    Thanks for this comment. I do want to get back to you, but won’t have time for a couple of days due to a couple of deadlines. I’m not ignoring you or anyone else in the comments section…..I just need time to respond fully and answer any questions you or anyone else has.

    Tara

    Reply

    Hi Donna,

    Sorry for the delayed response. Your story is really heartbreaking. Do you have any suggestions about the kinds of research that might be most useful for people who have conventionally diagnosed Lyme disease, as well as those who are seronegative?

    Tara

    Reply

    Hi Donna,
    Excellent article I never thought of Lyme as the consequence of global warming but of course.
    I am working on a project that is related to global warming and would like to brief you on it. I have info to email you.

    Reply

    First of all when Dr. Moriarity is calling for you to be a patient rep on her research agenda I recommend you say No! Her work speaks volumes and all it says is “status quo” she does not understand what its like to be in patients shoes seeing that she has never clinically treated lyme so she is not in a good position to understand the complexities of the situation (or to even look for them for that matter). I see she is pushing vaccines and anyone who pushes a vaccine for a disease that has OspA and antigenic variation clearly does not understand either how vaccines work or how the lyme bacteria works. The outer surface protein (OspA)of lyme Bb varies itself once the immune system has produced antibodies to it in order to evade immune detection and so it goes on and on once the antibodies have build up again it will change its outer surface protein and while changing it drops blebs (lipoproteins) which are toxic to the immune system and cause immune suppression. What do vaccines do? They create antibodies to a specific antigen so that your body is primed to attack the specific infection if and when you get it. Can you not see that with a disease like lyme that has antigenic variation that adding in antibodies would not be a good thing? Its just going to cause more immune suppression and damage to the immune system. For her to call Dr Chan’s work bumpkis or whatever she said is the epitome of irony as he is one of the only brave dr’s in Canada willing to go out on a limb for the lyme community and I have tried the conventional allopathic route (many, many time), now that is the real bumpkis as you will die running in circles like a gerbil on a wheel and get absolutely nowhere but more upset and sick. She likes to minimize the amount of people effected and to minimize the symptoms and duration of the disease. She is a stickler for guidelines which with a disease that presents so differently and generally as lyme does guidelines should be taken with a big grain of salt – she stands for the old guard and we need a new one so please when they call for your support say No to Queens and Dr, Moriarity.

    Reply

    First of all Dr Moriarity is not for the Lyme patient she is for the status quo -period so when her and her Queens cronies are calling around for your vote as to who gets the 4 million just say NO! Do you want the status quo/ old guard or do you want sick people to get the help they need? If you want change you must avoid Dr. Moriarity and Queens research at all costs as they will continue the medical negligence, patient shaming mocking attitude that currently prevails by solidifying nonsense research by doing more nonsense research (If you know what you are looking to find its not that hard to find it). The only thing I have to say about Dr Moriarity is that its very clear she doesn’t see or treat lyme patients because if she did she would know its a horrific, chronic disease that is very common and has been around for ages (not some new found bacteria that doctors are up against – come on!! ) and and this is what happens when you cherry pick evidence it creates a false picture and that is what people like her have been doing all along creating a lie. My only consolation is that she won’t get away with this forever because people with twisted motives that allow people to suffer and die can’t wriggle off the hook quite so easily in the end.

    Reply

    Tara has the lie in Lyme disease become so big that they have convinced you also that chronic Lyme does not exist. It’s post Lyme disease syndrome. We wish as patients this was all true. We would have no reason then to pursue for change. We would then just get back to our lives. There would be no reason for lobbying the government for money and medical system to fix the wrongs. No reason for supports groups in each province. No need for awareness and advocacy. No one wants to be left ill. No one wants to be in treatment. Perhaps one might think about this and do what is right for the patient. Use the money correctly as status quo does not work. We are the victims in this. Perhaps ask a patient they can tell you. How can we vaccinate something we can’t even test properly. Just my Sunday thought. Perhaps your facts are misconstrued. Just saying as a patient of 6years in this system or lack of.

    Reply

    Tara
    How is your research going to help those suffering with the post treatment, or ongoing treatment of Lyme and it’s co-infections?
    It seems that unless one has Diabetes or is obese, your research is is not going to help the majority of those suffering.
    Also, you still have not addressed the questions about congenital Lyme.

    Reply
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