Your Health

Bull's eye

With Lyme disease on the rise, health officials are taking aim at the tick-borne pathogen

Dr. Kateryn Rochon with a blacklegged tick
Dr. Kateryn Rochon with a blacklegged tick on her arm.
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Lyme disease risk areas

How to remove a tick

Tiny trouble

Video: How to remove tick

Video: How to check yourself for ticks

Video: How to avoid tick bites

Video: Differences between tick species

Winnipeg Health Region
Wave, Summer 2015

The stories have a familiar ring to them. A trip to a wooded area followed by a sudden illness with flu-like symptoms - fever, aches and hot and cold sweats.

In most cases, the illness is accompanied by a red bull's-eye rash somewhere on the body. But not always.

In other cases, the initial illness may be followed months later by other symptoms, including joint pain, headaches and cardiac issues.

Increasingly, these bouts of illness are being traced back to an encounter with a tick - a blacklegged tick, to be specific.

The tiny bug, also called a deer tick, is known to transmit a bacteria that causes Lyme disease, a potentially debilitating illness that is slowly, but steadily, becoming more prevalent across Canada.

In 2009, the first year the Public Health Agency of Canada started tracking Lyme disease, there were 128 confirmed and probable cases recorded across the country. In 2013, there were 682.

The number of Lyme disease cases in Manitoba has also grown steadily. In 2009, there were five confirmed and probable cases recorded in the province. By 2014, the number jumped to 35. Altogether, there have been 157 reported cases of Lyme disease in Manitoba since 2009, including 60 confirmed, 55 probable and 42 categorized as "other," says Scott Graham-Derham, a policy analyst with Manitoba Health, and one of the people who track where the blacklegged tick has established populations in the province. Those numbers do not include the many Manitobans who believe they have Lyme disease, but have not received a positive test result for the condition from a provincially-approved lab.

The increase in confirmed cases, as well as the rise in the number of people who believe they have Lyme disease but have not tested positive for the infection in Manitoba, has raised concerns among members of the public. Increasingly, they want to know more about the issues surrounding Lyme disease. In response, provincial and federal health officials have taken action to raise awareness about Lyme disease, including how it is diagnosed and treated. They are also involved in numerous efforts to help prevent the infection from spreading.

A mysterious condition

Lyme disease has actually been around in one form or another for thousands of years. In fact, scientists have determined that Otzi, the mummified remains of a man who lived 5,000 years ago in a region near the Italian and Austrian border, had the bacteria.  

But while the disease is fairly well known in Europe, it only started to attract attention in North America in the 1970s, after a number of people in the town of Lyme, Connecticut, were struck by a mysterious condition that left them with odd rashes, swollen joints and unexplained neurological problems.

Eventually, scientists were able to show that their conditions were caused by Borrelia burgdorferi, which the blacklegged tick picks up from small animals, such as mice and birds. Since then, the disease has slowly spread south, west and north, infecting a  number of Americans and Canadians along the way.

In Manitoba, the first unofficial reports of Lyme disease surfaced in the 1990s. Not surprisingly, these cases coincided with the arrival of the blacklegged tick, which had made its way into the province from the United States on the wings of migratory songbirds.

Previously unknown in this part of the world, populations of blacklegged ticks were first spotted in the southeast corner of the province. Since then, they have settled into areas around St. Malo, Steinbach and Kleefeld, the southeastern shores of Lakes Winnipeg and Manitoba, the Pembina Valley, and portions of the Assiniboine River corridor as far as the Brandon Hills. The thriving blacklegged tick population can be attributed to a number of factors that have helped make the environment here more hospitable for them, including climate change and the fact that more people are living and recreating in areas that had been relatively untouched. 

Interestingly, the blacklegged tick (Ixodes scapularis) is one of only two types of ticks in Canada that commonly spread disease, according to Robbin Lindsay, a research scientist of zoonotic diseases and special pathogens at the National Microbiology Laboratory in Winnipeg. The other trouble-maker is the western blacklegged tick (Ixodes pacificus). More common ticks, such as the American dog tick (also known as the wood tick), don't transmit disease because they lose the pathogens when they molt between larval and nymphal stages.

The blacklegged tick can be found from Manitoba through to the Maritimes, while the western blacklegged tick is found in British Columbia. In addition to Lyme disease, these ticks can also transmit other less common pathogens such as Anaplasma, Babesia and Ehrlichia, which can also cause serious illness. 

Of course, it is important to remember that not all blacklegged ticks are carriers of disease, according to Kateryn Rochon, a veterinary entomologist at the University of Manitoba.

As she explains, the tick must bite a host that has been infected with Borrelia burgdorferi or another pathogen, so much depends on the presence of the disease among mice and other small animals in the immediate area.

"The proportion of animals infected is always evolving," she says. Studies in the United States show that in areas where Borrelia burgdorferi is endemic in host animals, between 15 and 50 per cent of blacklegged ticks will carry the bacteria.

Even then, transmission of Lyme disease is not a sure thing. The blacklegged tick must be attached for 24 to 36 hours before they transmit pathogens to their host, says Rochon. Some studies suggest that only one to six per cent of those bitten by an infected tick will actually develop an infection.

Nonetheless, the potential for trouble can start early in the tick's life cycle. Adult female blacklegged ticks lay their eggs in early spring. Larvae hatch from the eggs, and seek a blood meal from a passing mammal or bird, in order to make the transformation to the nymph stage. If bacteria or other pathogens are present in the host animal, that passes into the larvae's mid-gut, says Rochon, who is an assistant professor in the Department of Entomology at the university.

The nymph must also have a blood meal in order to transform into an adult, again giving it another chance to pick up pathogens, or to transmit these to its host.

"The larvae that overwinter molt in the spring or early summer, which is why nymphs are active in the summer, and this is when most Lyme disease cases are diagnosed," says Rochon.

Symptoms of trouble

The Public Health Agency of Canada's criteria for categorizing a case of Lyme disease are relatively straightforward. A confirmed case requires clinical evidence of illness, a positive lab test and a history of exposure to an area populated by blacklegged ticks.

To be considered a probable case, a patient must have a history of exposure to an area populated by blacklegged ticks and a clinician reported erythema migrans (skin rash), or clinical evidence of illness and a positive lab test.

Manitoba Health also has a category called "other," which includes cases that have been reported to Manitoba Health by a physician or lab report, but do not meet the national standards for a confirmed or probable case of Lyme disease.

Dr. Richard Rusk, Medical Officer of Health for Manitoba Health and the province's point person on the Lyme disease file, says once infected, a person may experience three stages of illness - early, intermediate and late.  

Early-stage Lyme disease is generally diagnosed within 30 days of being bitten by a blacklegged tick. Initial indications of infection can include a bull's-eye rash, which occurs in approximately 70 per cent of cases and is caused by the body's immune system fighting the bacteria. Expanding out from the initial site of the infection, the rash can be a solid expanding red spot, or it can be a single red spot surrounded by lighter red skin, resembling a bull's eye. Early-stage Lyme disease is also associated with flu-like symptoms - fever, chills, fatigue, body aches and a headache.

If not treated immediately, Lyme disease can progress to the intermediate stage, emerging a few months after the infection. During this stage, the disease can spread to other parts of the body, causing a variety of symptoms, including rashes, joint pain, neurological problems, cardiac issues and temporary paralysis of one side of the face (Bell's palsy).

Late-stage Lyme disease usually occurs six or seven months after the initial infection. Symptoms can include arthritis in the joints, particularly the knees. As the disease progresses, it can cause a bewildering set of symptoms that mimic other diseases, including lupus, rheumatoid arthritis and multiple sclerosis, all of which are autoimmune diseases. Rusk says it can also be mistaken for menopause, Meniere's disease or Parkinson's. It is important to remember that the various stages of Lyme disease may overlap, says Rusk.

In terms of treatment, the earlier, the better. If a health-care provider suspects their patient has been infected, they will normally prescribe a course of the antibiotic doxycycline for two weeks. If the disease is in a later stage, treatment changes to 28 days of doxycycline.

"Oral treatment is shown to be 90 per cent effective in the early stages," says Rusk, adding that treatment is also effective in the later stages.

But diagnosing the infection is not as easy as it sounds.

Concerns and controversy

While no one questions the origins of Lyme disease or how it is transmitted, the diagnosis and treatment of the illness has been surrounded by controversy since the first North American cases started to surface in the 1970s.

Over the years, numerous advocacy groups have formed, including CanLyme (the Canadian Lyme Disease Foundation). They argue that many people with Lyme disease have not been properly diagnosed or treated.

Ron Rudiak's story illustrates their point. The Steinbach area beekeeper fell ill one summer day in 2006. He exhibited flu-like symptoms, including a fever and aches and pains throughout his body. Within a few days of falling ill, Rudiak visited his local doctor. After an examination, the physician decided that Rudiak should be tested for Lyme disease.

Ron Rudiak

Ron Rudiak says he has had plenty of experience with ticks over the years.

The theory that Rudiak may have been bitten by a disease-carrying tick was entirely reasonable. The 75-year-old man's bee hives are located on the edge of various fields, often in the shade of trees, and always in long grass - perfect tick habitat. And he certainly has had his fair share of experience with ticks. "Over the years, I must have pulled hundreds of ticks (of all kinds) off," he says.

There were just two problems. Rudiak did not have a bull's-eye rash and his lab test came back negative. As a result, Rudiak was left without a diagnosis for his ailments and no pathway to treatment.

Over the next six years, Rudiak searched for an explanation for his illness. During that time, he suffered damage to his nervous system and lost the ability to walk without the aid of a cane. Eventually, he came under the care of an infectious disease specialist in Winnipeg, who provided him with a prescription for antibiotics.

As far as Rudiak is concerned, he has Lyme disease, and the medication he is taking helps him cope with it. Yet almost a decade later, the lack of a rash during his initial visit or a positive test by a provincially-approved lab means it remains unclear whether Rudiak actually has Lyme disease or another illness with similar symptoms.

Over the years, a number of people who exhibit symptoms of Lyme disease but who have not tested positive for the condition have headed to doctors and labs in the United States, looking for answers. But, even some people living in the U.S. complain about not being able to get a proper diagnosis.

A high-profile example is Canadian pop-rocker Avril Lavigne. She recently went public claiming that doctors in Los Angeles were unable to diagnose her Lyme disease. During an interview on ABC's Good Morning America in late June, Lavigne talked about her struggle to find a diagnosis for her condition. "They would pull up their computer and be like, 'chronic fatigue syndrome.' Or, 'Why don't you try to get out of bed, Avril, and just go play the piano?'"

A complicated issue

The fact that some people infected with Lyme disease may receive a false negative when tested for the disease is not in dispute. But it is also a fact that some people who believe they have Lyme disease are actually suffering from something else.

That both of these things are true complicates the discussion around the diagnosis and treatment of Lyme disease in Canada, according to Rusk.

As he explains, the challenges in testing for Lyme disease can be attributed to the nature of the bacteria itself. "This type of bacteria is one that doesn't play well in the lab, and it's a chameleon inside the human body," he says. As a result, the disease is hard to detect, but not impossible to discover.

To get the job done, the province uses a two-tiered approach. If Lyme disease is suspected in a patient, a blood sample is sent to Cadham Provincial Laboratory, which runs an enzyme-linked immunosorbent assay (ELISA), looking for antibodies against Borrelia. If there is a positive result, the sample is then confirmed by the National Microbiology Laboratory, which uses the Western Blot test.

As Lindsay explains, the second test is needed because the first one may include people who actually do not have Lyme disease. "An ELISA can give you false positives," he says. "So protocol ensures we screen everyone with the ELISA and then refine the results with the Western Blot to eliminate people who were falsely positive on the ELISA."

The timing of the test is also tricky, adds Lindsay. A person recently bitten by a blacklegged tick may develop the red rash, but as the infection is still spreading in their body, they may not have developed antibodies to the Borrelia invader yet. "It's much easier once the disease progresses, often to the point where the person feels like they have arthritis, as that's the point where the bacteria get into the large joints," he says. "Typically, this is weeks to months after the person develops the rash. By then, their body has developed the antibodies, which show up on the tests."

Rusk says the limits of the testing process are well known and open to misinterpretation. "There is a period (10 to 30 days) when these initial immunoglobulins may not have developed to a measurable level yet (38 to 67 per cent sensitivity). We are well aware of that," he says. "However, a repeat test after 30 days is considered more accurate, and, if there are severe symptoms, the sensitivity is considered high (87 to 97 per cent)," says Rusk. "If the test does not come back positive, we have to consider the option that there is another reason for the symptoms."

While both men express confidence in the current tests, they also point out that they are constantly improving. "We give feedback to the companies that provide the tests, and they're providing us with new assays that are better at detecting the disease in its earlier stages," says Lindsay, adding that the National Microbiology Laboratory is working with diagnostic labs across Canada to review current diagnostic practices and quality assurance systems.

And Rusk says the new ELISA test being used at Cadham is an improvement over previous ones. "It's more specific, which makes it much harder to get a false positive."

Rusk and Lindsay also question the legitimacy of some tests conducted in the U.S. Rusk notes that one lab used by a number of Manitobans does not meet the standards required by the province.

"Their algorithms for testing and result interpretation are completely different from the accredited Western Blot tests that (local labs) carry out," he says.

"Subsequently, the Manitoba physicians who receive these results from the patients are unable to interpret them and would not necessarily start any treatment. However, in the interim the patient has now received a result that they believe is true and will expect some form of treatment, and hence the conflict begins."

Essentially, says Rusk, these labs are simply cashing in on Lyme disease.
"We have plenty of other examples of for-profit medicine that recommends tests or procedures that have been shown to potentially have negative outcomes. So my question for institutions is always: why are they not in compliance with the national standards, especially if they have something that they believe is as valid as that standard?"

Lindsay concurs, adding that the problem with some of the tests being used in the U.S. is that they rely on an algorithm that has not been fully validated. "In addition, it has been well-established that the approach used by some of these labs produces a large number of false positives, which should be a concern for all concerned."

In order to reduce confusion, American researchers are researching metabolic bio-markers that look for certain proteins that appear in the blood of an infected person, says Lindsay, adding this will change the course of how testing is done in the future.

The big picture

The debate over testing practices and diagnosis has attracted much media attention over the years. It has also sparked a lot of activity on the Lyme disease front that could help prevent transmission of the disease.

Since 2006, the federal government has spent $5 million on research into Lyme disease, a decision that was at least in part due to concerns being raised by advocacy groups. In 2014, it passed legislation - Bill C-442 - to create a federal framework for dealing with the spread of the infection. That led to the creation of an action plan, which is currently being implemented across the country in conjunction with provinces and territories.

According to a review by scientists at the Public Health Agency of Canada, including Lindsay, the action plan is designed to:

  • Improve understanding and awareness of Lyme disease by the public, health-care providers and other stakeholders;
  • Enhance national surveillance to pinpoint where the disease is emerging and which populations are at risk;
  • Support research to generate new insights to effective diagnosis and treatment;
  • Promote early diagnosis and treatment of Lyme disease.

As part of the action plan, a federal official has been working with Manitoba Health to assess the province's approach to Lyme disease, according to Rusk.

"The (representative) did an assessment of where we stand in comparison to other provinces," says Rusk. "While (British Columbia) and Nova Scotia are leaders in this area, we are ahead of the other provinces where Lyme occurs."

Working with the federal official, Manitoba reviewed how it communicated with the public and with physicians about Lyme disease. As a result, the province revamped its website and increased its educational resources for different audiences, says Rusk. In one example of how communication has been enhanced, Rusk says he has helped the Workers' Compensation Board craft workplace messages about Lyme disease.

At the same time, Winnipeg doctors have also become quite knowledgeable about the disease within the past five years, says Rusk. "Ten years ago, it was a different story. There was less general physician knowledge about this emerging disease," he says, explaining that some doctors may not have tested for Lyme disease immediately. "But today, education sessions have been done with family doctors, and our infectious disease specialists are very good at working on complex cases," he says, noting that testing for Lyme has jumped 30 per cent over the last five years, indicating greater awareness about the disease on the part of physicians. 

Some of the research envisioned in the action plan is already underway.

Rochon, for example, is researching the expansion of the blacklegged tick population in Manitoba. Part of the work involves examining the tick's life cycle. Normally, the blacklegged tick's life cycle lasts two years. But Rochon is investigating whether its life cycle in Manitoba may extend to three or four years, due to the fact that winters here are longer than in other parts of the continent where it can be found. 

Her team of students is currently trapping small mammals (such as mice and voles) in Beaudry and Birds Hill provincial parks, checking them for ticks, and taking a blood sample. The animals are then marked so the team can keep track of them, if caught again. "We're tracking the population of ticks, the diseases they carry and how endemic it is in the host population of mammals," she says.

This research will also yield information on when the blacklegged tick is most active. Unlike the American dog tick, which is primarily active in the spring and early summer months, blacklegged ticks are known to be active from spring to fall. But Rochon wants to better understand precisely how active they are at different points between May and October. This information will be particularly valuable to the Manitoba Beekeepers Association.

"Beekeepers are quite interested in this project because of where they work," says Rochon. "Their bee hives are at the edge of fields, which exposes the beekeepers to Lyme and the other diseases. They want to know when these ticks are active."

Don't fear the outdoors

Although blacklegged ticks can pose health risks, they should not deter anyone from enjoying Manitoba's great outdoors this summer.

As Rochon points out, the trick is simply to check for ticks throughout the spring and summer and into the fall.

Dr. Bunmi Fatoye, Medical Officer of Health with the Winnipeg Health Region, agrees that people shouldn't be afraid of venturing outdoors. "Keep active. Go camping and hiking. Get out and garden," she says. As for precautions, she suggests wearing long-sleeved shirts and pants tucked into your socks and using insect repellent. "And when you return home, inspect your body for ticks. Inspect your children and pets, too."

Have a shower within two hours of your return home, because it allows you to do a thorough tick check, with the aid of a mirror. "Wash your clothing, and then put it in the dryer. Ticks can't survive the dryer, because they can't handle that level of desiccation," says Fatoye.

If you notice a rash that might be associated with a tick bite, see your health-care provider. "If you can't get an appointment right away, or if you have to travel to see your doctor, take a photo of the rash with your camera or smartphone," says Fatoye. "That way you''ll have a record of it when you do get in to see your doctor."

Susie Strachan is a communications advisor with the Winnipeg Health Region.

Wave: March / April 2015

About Wave

Wave is published six times a year by the Winnipeg Health Region in cooperation with the Winnipeg Free Press. It is available at newsstands, hospitals and clinics throughout Winnipeg, as well as McNally Robinson Books.

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