Lyme disease was once all but unknown in Ontario. But as the offending ticks migrate north, health agencies warn it’s just a matter of time before Headwaters feels their bite.
For someone with a needle in her arm, Suzanne McQueen looks amazingly relaxed. Sitting in a puffy leather chair in Wendy Davis’s Orangeville naturopathic clinic, McQueen glances at the intravenous bag filled with a bright yellow solution. The fluid is designed to help mitigate the debilitating effects of the Lyme disease she has been fighting aggressively for the past year.
“Some people get a huge response from the intravenous,” says the 50-year-old small-animal vet. “I don’t get that, but I’m up and moving around, so that’s a good thing.”
Though McQueen isn’t completely free of the disease she figures she’s had for about eight years, she says continuing drug therapy and alternative health practices such as the IV have kept many of her symptoms – joint pain, skin problems and thyroid issues – in check.
Many of us would not willingly submit to an IV needle every week, but McQueen and others like her are driven to try almost anything they can.
A growing concern
As stories about the devastating effects of Lyme disease accumulate in communities like Headwaters, public health officials are intensifying efforts to reduce the risk of infection and increase the chances of successful treatment. As with many diseases, early detection is best. A two- to four-week course of antibiotics can cure Lyme. However, lingering disease is more difficult to diagnose and treat – resulting in a wide-ranging debate on the most effective approach.
In April, the Public Health Agency of Canada launched a three-year action plan on Lyme disease, which will include public education campaigns and focus on research and improved diagnosis.
And new federal legislation may boost these efforts. Green Party leader Elizabeth May shepherded through Parliament an act that calls for the federal health minister to convene a conference of provincial and territorial health ministers, as well as stakeholders, to develop a national strategy for dealing with Lyme – a disease that threatens to curb our enjoyment of the outdoors.
Once rare in Canada, Lyme disease is a growing concern, especially in the southern reaches of the country. By the 2020s, the number of cases in Canada is expected to rise to 10,000 a year.
“We have been turning increased attention to Lyme disease as it has become more common in Ontario,” says Kate Bingham, Peel Region’s associate medical officer of health. Only 22 cases have been confirmed in Peel since 2009, the year Lyme became a reportable disease, and in the area covered by Wellington-Dufferin-Guelph Public Health, just seven cases were confirmed during the same period. But the consensus is that the number of cases is under-reported – and likely to increase.
McQueen, for one, doesn’t show up in the statistics because she was diagnosed years after her suspected infection. Nor does her friend, animal rescue worker Jan Hannah, who has also been actively fighting Lyme for the past year.
Neither recalls being bitten by the villain of the piece: the black-legged tic (Ixodes scapularis), also called a deer tick. It can carry a bacterium called Borrelia burgdorferi, which causes Lyme, and is infectious even in the nymph stage, when it is no bigger than a poppy seed.
With no known tick bite, no tell-tale “bull’s-eye” skin rash and no positive blood test from their doctors, McQueen and Hannah are among a growing number of Canadians who embark on a diagnosis and treatment path that veers into the United States and outside mainstream medicine.
Hannah, who lives in Inglewood, was at her worst a few years ago. She had trouble climbing the stairs in her house and needed help from work colleagues to get dressed and function while on dog rescue missions in the Arctic. She stopped many of her favourite pursuits, including riding and biking.
“I was exhausted. I never woke up refreshed,” she says. “Three years ago I woke up with numbness all over my body.”
Multiple sclerosis was one possible diagnosis, but Hannah didn’t fit the profile. Then Lyme was suspected, but when she tested negative, her doctors abandoned this line of inquiry. So, like many Canadians in her situation, she turned to a private California laboratory that charges about $600 per test.
Some Canadian experts say the methods such labs use to interpret blood tests are too liberal and result in false positives. In addition, some labs operate under the radar of the U.S. Food and Drug Administration.
Both Hannah and McQueen tested positive in the California test. Their next step was to seek treatment by American “Lyme-literate” doctors who believe the tests are valid. These doctors often prescribe strict diets, aggressive drug cocktails, including antibiotics and antimalarials, and supplements to reduce the side effects of the drugs.
These practices lie outside mainstream medicine in both Canada and the U.S., but they can offer patients hope after so many dead ends.
How early Lyme is diagnosed in Canada
When patients come to Toronto family doctor Kathleen Kerr with a tick bite, a bull’s-eye rash or the summer “flu” without a cough, she asks more questions. “You check for rash, you check for ticks on the body,” she says. “You ask, ‘Where do you live? Where have you been? Is there Lyme in your community?’”
Lyme disease shows up in areas where the deer tick is endemic in woods and brush. These ticks are widespread in the northeastern United States, and they have now become common in seven regions in Ontario, largely along the north shores of lakes Erie and Ontario and the St. Lawrence River. At press time, Toronto’s public health unit was conducting Lyme tests on deer ticks found on the city’s islands.
Though no confirmed tick populations have been found in Headwaters, this may change, thanks to rising temperatures that are luring ticks north and because these small arachnids can travel with their hosts.
“Because ticks can hitch a ride on songbirds, you can technically get an infected tick anywhere those birds can fly,” says Bingham, adding some cases in Peel have turned up in people with no travel history to suggest they contracted the disease elsewhere.
Canadian patients showing signs of Lyme are diagnosed both clinically – in a doctor’s office after a history is taken – and via two blood tests, called the ELISA and the Western blot.
For a patient with a probable case, antibiotics can be prescribed before the blood tests come back, says Kerr, who is affiliated with Women’s College Hospital and represents the College of Family Physicians of Canada on the Public Health Agency of Canada’s Lyme disease panel.
A case is considered confirmed when a patient has been bitten by a tick, developed a bull’s-eye rash, and tested positive for Lyme antibodies in the blood.
But diagnosis isn’t always that straightforward. About 20 per cent of patients never develop the rash, and the Lyme-fighting antibodies that show up in the blood can take a few weeks to appear, so may be missed by early testing. Furthermore, in rare cases, use of antibiotics before blood testing can result in a negative Lyme test.
Much like the history of other emerging diseases, such as chronic fatigue syndrome and fibromyalgia, our understanding of Lyme comes in fits and starts. Unfortunately, when a patient shows up with signs of later stage disease, their symptoms – which may include joint and back pain, severe fatigue, skin problems, nerve damage, and neurological and cognitive difficulties – can suggest other conditions such as arthritis, chronic fatigue, mental illness, multiple sclerosis and even herpes.
For patients with no history of a tick bite and no early symptoms of Lyme, this can mean a prolonged process of lurching from one diagnosis to another. Just when one medication, such as an anti-inflammatory, alleviates a symptom such as joint pain, a new symptom may emerge. And if patients are tested for Lyme a long time after the initial infection, the blood test often comes back negative.
Critics of the Canadian system say the standard blood tests used to detect Lyme are too narrow and may miss legitimate cases, leaving patients in the dark for years.
Why “chronic Lyme” is controversial
What’s in a name? A can of worms, in the case of Lyme. The term “chronic Lyme” is used widely by patients and Lyme advocacy groups to describe the later stages of the disease.
But in mainstream medical circles, “chronic Lyme” often acts as shorthand for patients and doctors committed to unproven testing and treatment. Infectious disease experts prefer the term “post-Lyme treatment syndrome” to describe the symptoms experienced by confirmed Lyme patients who do not seem to respond to standard treatment or who relapse. The syndrome may account for some cases of “chronic Lyme” but not all.
Elizabeth May believes that the disagreement over the language of Lyme and treatment protocols illustrates the need for the various camps to sit down together. “That’s why we need a strategy,” she says. “We need to share best practices. Whatever you call it, we need more research to figure out what is occurring. What do you do to restore [patients] to health?”
The reigning theory in the chronic-Lyme community is that long-term antibiotics and other drugs are necessary, as outlined in the guidelines of the International Lyme and Associated Diseases Society. Lyme-literate doctors currently treat patients with these drugs for six months to more than a year.
Mainstream medical professionals, however, favour guidelines from the Infectious Diseases Society of America. It does not support the long-term use of antibiotics because of the risk of serious side effects (including liver and bowel damage, and dangerous infections such as C. difficile at the IV site) and the broader problem of antibiotic resistance in a growing number of superbugs. Another worry is that long-term antibiotic treatment may mask the symptoms of other serious diseases.
And then there’s the controversy over whether long-term antibiotics work. Some research suggests antibiotic treatment for post-Lyme treatment syndrome is no better than a placebo, though one study found that a few extra months on antibiotics did help reduce fatigue. But it didn’t help with another major complaint: decreased mental clarity or cognitive function.
Kerr hopes the future holds more co-operation and a greater focus on effective research. For now, she discourages patients from seeking treatment beyond what is documented to work. But, she says, patients “have the right to make the choice. I would tell them I’m not convinced it’s going to help.”
Of Lyme sufferers with ongoing symptoms, Kerr says, “Those people, similar to chronic fatigue, need more rest. They need a lot of accommodations in their life, a lot of support. Their immune system has taken a heavy hit and it hasn’t fully recovered. Like anyone, they will convalesce with all the good lifestyle support, including support from the medical community.”
That’s what Mariah Craig is hoping for. The 24-year-old Toronto film producer started noticing fatigue, joint pain and other health changes five years ago. During her worst moments she moved back to her parents’ home in Orangeville.
Like McQueen and Hannah, Craig was tested and sought antibiotic treatment in the U.S. She estimates she has been on 20 different antibiotics over three years and believes they have allowed her to continue to function, though she still struggles with Lyme every day. Her experience inspired her to launch a vegan catering company and recipe-writing business to help others adhere to a healthy diet.
Jan Hannah also says long-term antibiotic treatment has improved, if not cured, her situation. She says many of her symptoms are gone and on most days she feels 60 to 70 per cent well, which she’ll take.
Until medical science knows more about Lyme, the one thing on which everyone agrees is the importance of educating the public about how to avoid tick bites – and, if bitten, getting early treatment.
Back in Davis’s clinic, McQueen’s IV bag continues to drain. In addition to the B-complex vitamins that turn the solution bright yellow, the mixture includes additional B5, B6 and B12, as well as calcium, magnesium, zinc, selenium, trace minerals and glutathione, an antioxidant.
Davis makes no claim that this infusion cures Lyme. Rather, she says, its purpose is to boost McQueen’s immune system. “Medications do, indeed, have their place and we definitely need them, but the side effects are often very problematic,” she says. “We work to give the body the nutrients it needs to heal.”
The weekly IV sessions are part of McQueen’s routine, which also includes treatment under the supervision of a Michigan doctor with a controversial device called a Rife machine. McQueen has bought her own machine, which purports to use electromagnetic frequencies to kill bacteria in the body.
At her worst, McQueen says her fatigue was so severe she felt as if she were weighed down by “a thousand bricks.” She has come a long way since then, but knows she still has miles to go.
“You want that magic pill to feel better right away,” she says. “And that’s not going to happen.” Still, she is optimistic. “I think it all works together. I just want to get better.”
What is Lyme disease?
A bacterial infection transmitted to humans when a female black-legged, or deer, tick carrying a bacterium called Borrelia burgdorferi burrows into the skin to feed on blood. Note that not all deer ticks are carriers.
Early symptoms, which can take up to 30 days to appear, may include a bull’s-eye rash and flu-like symptoms. If the disease is caught early, a course of antibiotics usually clears it up.
The disease may also cause joint and back pain, arthritis, severe fatigue, nerve damage,and neurological and cognitive difficulties, among other ailments. These symptoms may develop over time.
Why is it called “Lyme” disease?
In the 1970s, Lyme, Connecticut, was one of the first documented sites of the emerging disease.
Are deer ticks endemic in Headwaters?
Not yet. But birds and other animals can transport ticks here. And if you’re travelling to one of the following areas, take precautions. These areas are home to known deer-tick populations:
- Long Point Provincial Park
- Turkey Point Provincial Park
- Rondeau Provincial Park
- Point Pelee National Park
- Prince Edward Point National Wildlife Area
- Wainfleet Bog Conservation Area
How do I avoid tick bites?
- If you can’t avoid known tick habitats, apply insect repellent to your skin and clothing. Check regularly for ticks and remove attached ticks immediately.
- In high-risk areas, wear long-sleeved shirts that fit tightly at the wrist and long pants tucked into socks or shoes or boots. Light-coloured clothing makes it easier to see ticks that land on you.
What if I find a tick on myself?
Infected ticks don’t usually spread the bacterium during the first 24 hours.
- Use fine-tipped tweezers to remove the tick immediately. Grab the tick as close to your skin as possible and gently pull it straight out.
- Don’t squeeze, twist or crush the tick while removing it because this might separate the head from the body, which makes identification harder.
- Clean the bite spot with soap and water, or disinfect with rubbing alcohol or an antibiotic ointment. Wash your hands.
- Where’s there’s one tick, there may be more, so check yourself thoroughly.
- Place the live tick in a small container with a tight-fitting lid. Add a cotton ball dampened with water to keep it alive. If collected ticks are dead, store them in a freezer to prevent mould.
- Contact your doctor or public health unit about testing the tick for Lyme, and see your doctor if you develop any symptoms of Lyme disease.
Can my dog get Lyme disease?
Yes, though not all ticks found on dogs are the deer ticks that may carry Lyme. But dogs can be infected, so check for ticks after every walk and contact your local vet about prevention. Your vet will know if ticks are a problem in your area and can advise you appropriately. If you plan to travel with your dog, ask your vet about the risks in the areas you will visit.
And remember, about 95 per cent of dogs that test positive for Lyme won’t develop symptoms, so don’t panic if you do find a tick.
Sources: Peel Public Health, College of Family Physicians of Canada, Public Health Agency of Canada, Centers for Disease Control and Prevention, University of Guelph.