Part 2. In this second article of a two-part series on ticks and tick-borne diseases in Nova Scotia, we look at community involvement in the fight to have Lyme disease recognized as the serious health risk it is, what the federal and provincial governments are doing about it, and at what we need to know about preventing tick-borne diseases. Part 1 is here.
Rob Murray calls himself a “Lyme warrior.”
He’s also a treated survivor of Lyme disease.
In 2013, Murray retired from his 40-year dentist practice in Lunenburg, ready to embrace his new freedom.
“I’m a kayaker and an outdoors person,” he tells the Halifax Examiner. “And that’s what I thought I would be doing in my retirement. Lyme disease changed that in a hurry. I can’t lift the boat now. I’m too stiff and arthritic to get in one.”
Murray says that tick bites don’t itch, you don’t feel them, and often you don’t even know you had one.
All he had to indicate he’d been bitten, he says, was a huge, nasty welt on his thigh, and then a year later he had symptoms that no one could explain.
“I was walking around with a body 100 years older than I am,” he says. His doctor tested him for a half dozen illnesses, including Lyme disease, and told him he had none of them.
Murray says that is simply wrong.
Since then, he has been fighting to get the medical community to take Lyme disease seriously, develop better testing and treatments, and invest in research. He says it has become a “full-time job” — albeit one with no salary.
Murray is a board member of the Canadian Lyme Disease Foundation, and he spends much of this time studying about the disease, organizing conferences, and writing letters to politicians and government officials expressing his concerns, over and over again.
To call Murray passionate about the issue and meticulous in his research on Lyme disease would be a massive understatement.
In January 2020, he wrote a 20-page letter to then Nova Scotia Minister of Health and Wellness, Randy Delorey, informing him that the Lunenburg Lyme Association had held a two-day “Lyme SOS conference” in Bridgewater in November 2019, with 600 people in attendance, including 250 health professionals, among them the province’s chief medical officer of health, Robert Strang. In his letter, Murray laid out in great detail, and with many scientific references, his arguments about what is wrong with Lyme diagnosis and treatment in Canada.
An excerpt from Murray’s letter reads:
Most Canadian patients, and particularly those with late stage Lyme, have to travel out-of-country to get diagnosed and treated with combinations of long-term antibiotics and possibly other medications for associated neurologic complications, all at their own expense. A relatively simple case could take six months to treat and most people require at least a year and a half. Whole families are sometimes infected and they simply cannot afford the costs of travel and treatment. For Canadian residents, being unable to access timely and/or appropriate effective care in Canada for Lyme disease is unacceptable and a travesty.
How many more Canadians need to lose their jobs, homes and lives to essentially what is a treatable disease and ignored epidemic?
Murray says he is not expecting a reply to his letter.
In March 2021, Murray was busy writing again. This time, it was a statement on behalf of the Canadian Lyme Disease Foundation to the House of Commons Standing Committee on Health (HESA), in which Murray once again laid out his case for a different public health approach to Lyme disease in the country:
The Canadian Lyme Disease Foundation [CanLyme] Board of directors is utterly dismayed by the Public Health Agency of Canada’s [PHAC] interpretation and implementation of the Federal Framework on Lyme Disease. Nova Scotia achieved a new record for Lyme cases according the 2019 NS Surveillance Report of an estimated 830 cases. That there is under-reporting is not in dispute, two estimates vary but not significantly and are similar to the 90% under-reporting as stated by the CDC [Centers for Disease Control] in the U.S. Using the very conservative U.S. CDC multiplier of 10 the province as a whole had 8,300 cases, which exceeds the total of all other reportable infectious diseases combined including influenza.
The NS Western Health Zone had a rate at least equal to, if not greater than areas of the eastern U.S. with a record estimate of 6,400 cases for a rate of 3,204/100,000 population. [Murray used numerous footnotes in his statement but those have been removed here.]
“You just wish you were dead”
Murray tells the Examiner that per capita, Nova Scotia has, “one of the highest rates of Lyme in the world.” For perspective, he adds:
That means it’s more common than all our other reportable infectious diseases combined, including influenza, but all the focus has been on COVID and mosquito-borne diseases. Why the difference? Is it because one is new and scary? The problem Lyme has is that it doesn’t photograph well. Death from Lyme can occur but is infrequent — you just wish you were dead.
In Murray’s view, the policies around Lyme are “more informed by politics than science.” This, he says, “hinders a patient’s access to timely and accurate diagnosis and early treatment, which are absolutely critical to a good prognosis.”
Murray believes this problem has its roots south of the border:
The Centers for Disease Control in the United States has downplayed the severity of Lyme disease, essentially classifying this disease as a low and non-urgent health risk. Public health agencies worldwide are blindly following what has been deceitfully established.
In his statement to the Commons Committee Murray spelled out his concerns this way:
Lyme disease has been framed as an illness that is difficult to acquire, easy to diagnose, easy to treat, readily cured with a short course of antibiotics. It’s none of those things. Lyme disease, a multisystem, multistaged disorder caused by certain species of spirochetes [spiral-shaped, slender bacteria] from Borrelia burgdorferi sensu lato [the broad taxonomic group] complex, is an incredibly controversial medical phenomenon that affects millions of people in the northern hemisphere in many different ways. It is an infectious zoonotic disease that can usually be successfully cured by antibiotic therapy at the very early stages of infection, targeting the replicative forms of spirochetes. 10%-20% of treated patients will go on to develop debilitating symptoms and … are at risk of losing their health, jobs, homes and lives. There are many more that didn’t get diagnosed or treated because they didn’t see a tick, or recall seeing a rash.
Lyme is 1.5 times as common as breast cancer, 8 times more common than HIV and far more common than West Nile and Zika virus combined. Lyme patients share a lot in common with long-haul COVID patients.
Again, Murray provides numerous references for his claims.
He tells the Examiner that the bacteria that causes Lyme is a “shape-shifter that does not respond to single treatments of antibiotics:”
Once the Borrelia burgdorferi bacterium is in the body, it starts to change its form by altering the proteins on its outer cell wall, effectively hiding itself from the immune system. Borrelia can form biofilm like plaque on teeth and this is 1,000 times more resistant to antibiotic attack than pelagic [free-swimming or floating] organisms. This can help it survive standard antibiotic treatment approaches.
Never one to mince words, Murray also wrote this to the Commons Committee on Health:
Lyme and tick-borne diseases [Lyme+] prevalence increases each year, nobody knows the number of patients that remain ill. The countless thousands who remain undiagnosed must be added to this big and growing number. Canada-wide we are in a crisis due to a very well imbedded denial of access to health care for anyone who doesn’t meet a very narrow set of criteria as dictated by the private lobby group, the Association of Medical Microbiologists and infectious Disease [AMMI] Canada, who owe their loyalty and take their direction from the private U.S. big sister organization, the 12,000 member International Diseases Society of America [IDSA].
The chief job of government is to protect its citizens. Medicine and politics have both failed us with the ignored epidemic of Lyme disease.
The Nova Scotia Department of Health and Wellness has a page on Lyme disease in the section of its website devoted to “Communicable Disease Prevention and Control,” and in a 2020 document it also provides primary care and emergency medicine providers in the province with guidelines for managing Lyme disease.
As reported in Part 1 of this series, the Examiner contacted Nova Scotia Health and Wellness and requested an interview to get updated information on tick populations in the province, the health risks they pose, and any research ongoing to minimize those risks, or new testing and treatment regimes. That interview was not granted. The Examiner then emailed questions to the department, but that email was not acknowledged.
However, a federal government scientist did agree to an interview.
Canada’s Lyme “hotspot”
Robbin Lindsay is a research scientist in zoonotic diseases and special pathogens at the Public Health Agency of Canada’s National Microbiology Laboratory in Winnipeg, and a member of the Canadian Lyme Disease Research Network.
Lindsay is all too well aware of the gravity of Lyme disease, and not just in Canada, as he explains to the Examiner:
Lyme disease is probably the one — if not the most important — human tick-borne disease in the world. We see it in North America, including almost all of the US and Canada. It’s found in Europe and Asia. There are different tick vectors and a more complex ecology there, because there’s about 14 species of Borellia burgdorferi in this [broader taxonomic] group called sensu lato, a large group of closely related bacteria. In Europe, there’s probably at least three or four different species of these Borellia that cause human disease. The manifestations of that disease differ depending on the genus and species of bacteria … you can get primarily skin manifestations, you can get primarily neurological Lyme disease, or neuroborreliosis, and then you can get the standard arthritis … Again, we think that’s to do with the strain. But it’s definitely a global problem, essentially in temperate parts of Asia, Europe and North America.
But all parts of Canada are not equal when it comes to Lyme. For years, Lindsay says, Nova Scotia has “led the way in the incidence” of Lyme disease.
Ontario may have more total cases, he concedes, but “Nova Scotia is far and away the hotspot in Canada with respect to Lyme disease … It’s strikingly high.”
Lindsay says that the federal government has been keeping tabs on the changing tick populations since black-legged ticks (Ixodes scapularis) that carry Lyme were first discovered in Nova Scotia in the early 2000s.
“We put systematic surveillance in place, and as more sites became obvious, we detected more locations with these ticks present in them,” he says. At first, they did what he calls “passive tick surveillance,” which meant asking the public, physicians, or veterinarians to submit ticks to a central location.
They followed this up with actual surveillance of tick populations in the field, and found that the ticks were spreading throughout southwest Nova Scotia, then north into the Pictou area, and that the population expansion in the province was “quite dramatic over a 10-year span.”
According to Lindsay, the problem in Nova Scotia is that there is a “very healthy nymphal tick population and they’re busily transmitting infection.” He explains:
Ticks at that teenage stage are not as abundant in other jurisdictions. That’s what is driving the infection prevalence or incidence of infections — lots of nymphs in the environment, lots of opportunities for people to be bitten by these very tiny ticks that they don’t notice and don’t promptly remove.
To sample for ticks, researchers drag a square of one-square-metre piece of white cloth mounted on a pole and tied to a piece of rope through the environment.
Lindsay says he has sampled for ticks in both southern Ontario, which is where black-legged ticks were first detected in Canada, and also in Nova Scotia. He found that tick nymphs were “nowhere near as prevalent in Ontario” as they were in the Lunenburg area.
In summer months, he says it is not uncommon in Lunenburg to pick up as many as 100 tick nymphs in one hour of dragging. “It’s a real phenomenon,” says Lindsay, a “perfect storm” for ticks and Lyme disease.
Climate change has made summers longer and warmer, which allows the ticks to expand their range, he says, and Nova Scotia offers a combination of conditions that are “ideal” for the ticks, including a well-developed population of rodents. “The right habitat, right hosts, and right climate have allowed the expansion to occur.”
Lindsay tells the Examiner that one of the main areas of research he’s been doing with the Research Network is to try to “get at the meat of what’s driving Lyme disease” and the best ways to test for it, one of the issues that so concerns Lyme “warriors” like Rob Murray.
“A very important question we’re trying to answer is: do our diagnostic tests detect the different strains [of Lyme-causing bacteria] with equal efficacy?” Lindsay says. “So we’ll be able to test that.”
He says they have been enrolling people who have Lyme disease and taking blood samples from them, and then continue to take samples from those individuals for up to 18 months. They are thus able to determine which strain people are infected with, and how the disease caused by that strain manifests itself.
They use the samples to grow the bug in the lab, creating a “biobank” of bacteria strains. Lindsay says they will be also able to tell if the tests they run pick up evidence of infection for all the strains of bacteria, or only certain types of strains.
That is probably the most exciting new research that we’re doing because we’re really going to be able to get into the details of which strains are infecting people. And right now, the study’s just started in Kingston area of Ontario, but one of the hubs is going to be in Lunenburg. So we’re going to be able to compare what’s going on in in southeastern Ontario with the very dynamic situation that’s going on in Lunenburg. I think that is extremely exciting to really gain a better understanding of what the different strains are and how they manifest, how the tests work, to be able to accurately detect people with infection.
As for a vaccine for human Lyme disease, Lindsay says that will take time:
I know that at least two camps are working on a vaccine, but human vaccines outside of the global [COVID-19] pandemic usually take in the range of five to 10 years to become fully licensed. I know we’re looking at two very serious candidates that are coming out with two different vaccines. But I can’t imagine that we’re going to see anything over the counter for at least three to five years.
There was a vaccine
The Centers for Disease Control (CDC) in the US reports that clinical trials are now underway for new vaccines for Lyme disease.
The CDC also notes that while no vaccine is currently available, once upon a time there was one for human Lyme disease:
The only vaccine previously marketed in the United States, LYMERix®, was discontinued by the manufacturer in 2002, citing insufficient consumer demand. Protection provided by this vaccine decreases over time. Therefore, if you received this vaccine before 2002, you are probably no longer protected against Lyme disease.
The story of why that vaccine was withdrawn from the market is a long and complex one, which would require an article all to itself . A 2007 study, “The Lyme vaccine: a cautionary tale,” in the journal Epidemiology and Infection summarizes its sorry fate this way:
Although the FDA [Food and Drug Administration] did not revoke the licence, the manufacturer withdrew the product amidst falling sales, extensive media coverage, and ongoing litigation, even though studies indicated the vaccine represented a cost-effective public health intervention for people at high risk of acquiring Lyme disease.
Although preliminary evidence supported LYMErix™ safety, product withdrawal precluded completion of more definitive studies. In the wake of the scientifically justified withdrawal of the rotavirus vaccine, LYMErix™ entered the market at a time of extremely low public tolerance for vaccine risk … Low demand for the vaccine and its subsequent withdrawal from the market represent a loss of a powerful tool for Lyme disease prevention.
Until a new vaccine is available, the only options are preventing and managing tick-born infections in humans. Says Lindsay:
Managing comes down to five things. Make sure people are aware, make sure they know how to prevent the exposure, make sure doctors can diagnose it and treat it, and make sure that we’re on top of monitoring the trends and being able to make those adjustments.
How to protect yourself
Lindsay has some tips on how people can protect themselves from tick-borne diseases:
You have several options. First and foremost, you want to wear the appropriate clothing. Shorts are out. You need to wear long pants. You can actually reduce the numbers of immatures [tick nymphs] that are biting by tucking your pants into your socks, if you’re willing to look like that. It definitely works because the nymphs are a couple inches off the ground looking for a mouse. But when you step there, they have to come up your shoes and up the pant leg, so tucking your pants in keeps them out. You can also wear insect repellent on your clothing or exposed skin. There’s an excellent new product called “No Fly Zone,” which is clothing treated with permethrin that kills a tick [and is good for] up to 80 washes. So that’s something I really recommend.
We actually recommend that people take a bath or shower within two hours of being outside, and that reduces risk as well. If you think there are ticks in your clothing, you can toss them in the dryer for 10 minutes. Ticks don’t like dry conditions, and that actually kills them more so than washing. Washing only kills a percentage of them, and makes them cleaner, but it doesn’t kill them as effectively as the dryer. So you do those things and promptly remove any attached ticks. You can enjoy the great outdoors and not have to worry too much about ticks, but you have to remain vigilant. These things are now part of the landscape in Nova Scotia. So you adjusted to the American dog tick, you will adjust to the black-legged tick as well.
And if you or your dog have been bitten, and you don’t know what kind of tick it was, Lindsay says there is a “beautiful new service” for identifying ticks in Canada called eTick:
What has come into play now is a surveillance system called eTick, where you can submit an image of the tick to somebody. Within 24 hours they’ll tell you what type of tick it is. And again, the idea here is if you know how long it’s been attached to you, you can make a decision about what the risk is, based on knowing how long it was attached and the type of tick. If it’s been on you for more than say 36 hours, then it is a good idea to see your physician to potentially get a preventative treatment.
Advice from treated Lyme survivors
Lyme activists like Rob Murray are not reassured or impressed by the efforts of public health agencies in Canada to inform the public about tick-borne diseases and their prevention.
Murray sent the Examiner reams of material on Lyme, with detailed recommendations on what public health agencies, the medical community, and the public should be doing to reduce the risks of tick-borne diseases. In his view, the public needs to have a lot more, and more up-to-date information, and he has some advice for all of us:
Be aware of all possible presenting symptoms and keep a diary. It used to be felt that ticks were unlikely to transmit infection in less than 24 hours but from the results of a more recent July 2018 study we now know transmission is possible for nymphs in 12 hours or less, so the sooner the tick is removed the better. The minimum attachment time for humans has never been established so let’s quit pretending that we have days. More Canadian science is needed on this problem. It is therefore important to remove nymphs or adult ticks as soon as possible after being bitten to reduce the chance of transmission.
Murray is also critical of the Nova Scotia government’s response to tick-borne diseases:
Education is the answer and it will likely require the use of a whole suite of approaches to help slow or control this silent ignored pandemic. Nova Scotia has a Tick-Borne Diseases Response [April 2019] Plan on their website that is revised yearly but has never been implemented. It is a very weak response and almost completely passive. The N.S. risk map can be printed as a poster as can the pamphlets and an additional poster in the column to the right.
And, Murray observes:
Nova Scotia for the most part lacks visible warning signs in key locations like visitor information centres, hospitals, public health offices, clinics, schools, municipal and town offices, parks, campgrounds, and trails. There are few public service announcements in the media that you could be seriously injured or killed by an infection acquired from a tick bite. There are no education programs in our schools and doctors continue to be taught erroneously that Lyme and TBD’s [Tick-borne diseases] are nothing more than minor nuisance diseases.
Vett Lloyd, a professor of biology at Mount Allison University and principal researcher at the Lloyd Tick Lab, who figures prominently in Part 1 of this series, says there are no simple solutions for Lyme and other tick-borne diseases.
She notes that even though diagnostics for Lyme in dogs are good, and canine vaccines are available, “none is 100%.”
“They just lower the risk,” she says. And they don’t work to prevent other tick-borne ailments, such as tick paralysis, which is a “massive immune response to tick saliva.”
Although there are ongoing trials for a human Lyme vaccine, Lloyd cautions that we are up against a “complicated bacteria:”
What we have for preventative approaches right now, they all work, but none of them are 100%. So it [a vaccine] will be another really important tool in the preventative arsenal, but that’s probably not going to be a magic wand we can wave and make the problem go away.
Brenda Sterling-Goodwin has been living with Lyme since the late 1990s. For many years, she has spent much of her time trying to raise awareness about the disease.
Sterling-Goodwin is categorical about what needs to happen now in how the medical community and government agencies handle Lyme disease. telling the Examiner:
“Things must change. There are far too many people suffering as a result of being undiagnosed/misdiagnosed. The Lyme battles continue.”
Then she repeats her Lyme mantra.
“Education is Key!”
 Rob Murray is one of the people featured in the 2019 film, “Faces of Lyme,” in which Nova Scotians relate their own experiences with Lyme disease and offer advice on how to reduce risks of ticks and tick-borne diseases, which was shown at the Lunenburg Doc Fest that year.