Lyme disease stirs fear, frustration
Ticks turning up in urban areas as doctors, public realize risk
Clad in a white coverall and dragging a length of white flannel, Manisha Kulkarni seems a sinister figure in suburban Ottawa as she drags for a growing threat that is invisible to the naked eye.
Blacklegged ticks may be as small as a poppyseed but they can carry the bacteria Borrelia burgdorferi, which causes Lyme disease. It can be treated with antibiotics but, if left untreated, Lyme can cause arthritis, neurological problems, numbness, paralysis and, on rare occasions, even death.
“With urbanization, residential neighbourhoods are spreading into what used to be wooded areas where ticks are found,” explained Kulkarni, a medical entomologist at the University of Ottawa’s School of Epidemiology and Public Health. “This means that in many parts of the city, people can pick up ticks while walking through tall grasses, bush or wooded areas in their neighbourhoods or even in their own backyards.”
For the first time earlier this summer, Ottawa was officially deemed an area at risk of Lyme disease. That’s because more than one in five ticks captured last year tested positive for the bacteria.
Kulkarni and her team are working with Ottawa Public Health to combine satellite data of the landscape, tick surveillance and reports of new human cases. The aim is to be able to predict where the threat is high and who, for example children and the middleaged, is most at risk.
There were seven cases of the disease reported in Ottawa in 2010. By 2016, there were 75, an increase Ottawa Public Health linked to both increasing tick populations in Eastern Ontario and growing awareness of Lyme disease, which advocates believe is vastly underreported.
By the end of last month, 61 Lyme cases have been reported, half of them in people who don’t know how they were exposed. Of the 30 remaining cases, 15 involved exposure in Ottawa and 15 outside of the city.
So far this summer, Kulkarni’s team has received more than 200 of the arachnids from the public — about 15 per cent of them infected — submitted from areas around the western Greenbelt, Kanata, Carp, Stittsville and south of the city along the Rideau River. They’re stepping up searches for ticks this summer and fall in the city’s east end, where fewer ticks have been submitted.
This time of year, many of the ticks are at the nymph stage of development, which is highly correlated to human infection because they’re so small and hard to see, Kulkarni said. They can go unnoticed, even for days, as they feed in places such as the groin and scalp. The risk of infection rises the longer the tick is attached. More ticks are submitted in spring and fall when the easier-to-spot adults are active.
“We’re approaching almost double what we received last year and we’re only in August now,” Kulkarni said. “From there, I think we can expect a lot of ticks this fall.”
None of this comes as a surprise to Heather Millar, a mother of two, from Cumberland. She developed the classic bull’s-eye rash during a camping trip west of Ottawa last summer despite knowing to protect herself from tick bites. She also knew to head straight to a doctor because her sister battled Lyme that took years to diagnose.
Millar herself suffered through weeks of exhaustion, headaches and rashes but ultimately recovered with a course of antibiotics which, given her sister’s example, she was determined be on longer than typically recommended.
Then, this June, she spotted the same bull’s-eye rash on her toddler, Lily. Not yet two years old, the little girl must have been bitten by a tick while playing in the front yard of her daycare, blocks from home, her mother says. Lily, too, recovered with a course of antibiotics.
Millar feels lucky that both developed the telltale rash — not everyone does — alerting her to need for treatment, but she said the experience still left her scared.
“I don’t think people are aware enough and I don’t think people recognize how serious it is,” Millar said. “I’m seeing more warnings about Lyme and ticks and prevention, but it’s been a long time coming.
“If it can happen in your own backyard, you have to be really careful everywhere.”
Dr. Monir Taha, the city’s associate medical officer of health, issued a warning about Lyme to about 1,400 Ottawa family doctors, hospital emergency rooms, infectious disease specialists and walk-in clinics in April. The risk is now high enough that Ottawa Public Health recommends a dose of prophylactic antibiotics if a patient finds a tick on their skin that is engorged with blood or has been attached for 24 hours or more and it was removed within the past 72 hours.
Even if a tick has been attached for less than a day, patients should watch for symptoms for 30 days so they can be quickly treated, Taha wrote.
All cases of Lyme have to be reported by law to public health officials.
But despite the warnings, Lesley Fleming of VOCAL Ottawa, which stands for Voices of Canadians About Lyme disease, says that she still hears from newly infected patients who aren’t being treated or get what advocates see as outdated treatment while people with chronic symptoms suffer without help or seek out costly alternative therapies on their own.
The group calls it “an ever-growing silent epidemic.”
“There are still some doctors who will say Lyme disease doesn’t exist here, you don’t need to worry about it — which is wrong, of course,” Fleming said. “Not only are chronic Lyme patients not being treated in Canada but those with acute infection are not being treated appropriately and swiftly in Canada either.”
Frustrated by what she sees as a lack of response by government to a crisis, Fleming is organizing Fighting For Our Lyme Lives, a rally next month in Ottawa.
The nation’s public health agency laid out the divide over the disease at a conference held in Ottawa last year to develop a federal framework. At the conference, Lyme patients complained that the medical system has failed them.
They reported inadequate testing with both false positives and negatives, misdiagnoses that had ruined lives, families and careers, disrespect and stigma from doctors who often knew little about Lyme and ticks and their belief that the disease is vastly underreported.
On the one side are Lyme treatment guidelines endorsed by the Association of Medical Microbiology and Infectious Disease Canada (AMMI) and by their U.S. counterparts, the Infectious Diseases Society of America. They’re based on what the public health agency called the “best available evidence known worldwide” in the framework published this May.
They’re used by the broader medical community, which generally doesn’t recognize what’s known as chronic Lyme disease, instead referring to post-treatment Lyme disease syndrome, in which patients have lingering symptoms even after the infection is cleared by a course of antibiotics.
On the other side, there are what
If it can happen in your own backyard, you have to be really careful everywhere.
the feds describe as “a small number” of doctors who use guidelines developed by the International Lyme and Associated Disease Society (ILADS), which recommends antibiotic treatment until symptoms of what’s believed to be an ongoing infection go away.
Critics say that long-term antibiotic treatment has been proven ineffective in clinical trials and that it could harm both individual patients who suffer complications such as infections with antibiotic-resistant bacteria and public health by contributing to the development of those bacteria.
Yet there is “common ground” between advocates and physician groups, said Dr. Daniel Gregson, a past president of AMMI who took part in developing the federal framework, telling patients at the conference last year that “many of you are suffering, and that is difficult for me as a doctor.”
Canadians need more education about Lyme disease and how to prevent it and quality research to fill the “science gaps,” such as why about 15 per cent of people treated for the disease continue to have long-term symptoms, he said.