Advocates call for more proactive stance on Lyme disease in province | Community

A local Lyme disease advocacy group is urging the province to take a more proactive stance on the sometimes-debilitating illness spread by black-legged ticks.

The Nova Scotia Lyme Advocacy Group made a pitch to Premier Tim Houston and other PC caucus members for better education and awareness for all health-care providers, as well as the creation of a dedicated tick-borne diseases care clinic (like Manitoba’s Tick Collaborative Care Service) and the formation of a non-partisan task force that would include patient representation.

“Most in attendance were quite engaged,” Donna Lugar, a representative from the group and long-time Lyme advocate, told Advocate Media. “Premier Houston closed the presentation and noted that our asks were not unrealistic.”

The group has asked to make the same presentation to the NDP and Liberal parties.

The push for more government action comes as incidences of Lyme have exploded. Nova Scotia is a hot spot.

Researchers at Maryland’s Johns Hopkins University discovered last year that western Nova Scotia has some of the highest rates in North America, with 638 new cases in 2019, up from 140 in 2014.

The area doesn’t have an exceptional number of ticks compared to northern Nova Scotia or the Halifax region. Most of Nova Scotia is considered high risk. Instead, the higher case count is due to awareness about the disease on the part of South Shore residents and their doctors.

Missed cases

While awareness is growing, cases are still falling through the cracks.

Andrea Henry got bitten by an infected tick last summer after moving with her family from Ontario to Debert but suffered with symptoms for months before getting diagnosed.

“I had full body joint and muscle pain making me bedridden, (with) fever, extreme fatigue, slept for days, a basic skin rash and Bell’s Palsy on the left side of my face,” she said. Without the classic bull’s-eye-shaped rash showing a tick bite, however, her family doctor denied her a Lyme test.

It wasn’t until four months later, when a bull’s-eye rash appeared and her mother drove her to a hospital in Halifax, that she was immediately diagnosed with Lyme disease and put on a course of antibiotics.

On doxycycline, the most common antibiotic used to treat Lyme, she started to feel better. But her symptoms returned. She’s now being treated for late-stage Lyme disease.

Lyme advocates say cases like Henry’s are still sometimes par for the course in Nova Scotia, where the disease is missed or misdiagnosed and efforts to avoid ticks are getting increasingly difficult as global warming makes the province a more hospitable home for the blood-sucking insects.

Adult black-legged ticks, also known as deer ticks, can hide out in piles of leaves in the winter and survive temperatures of -18 C. Tick eggs can withstand -30 C. Ticks become active at 4 C or higher. They die off in high heat and low humidity.

New preventative treatments

Pharmaceutical company researchers are working on a host of Lyme vaccines and preventative products for the bacterial infection. Some are far along in test phases and could be available within the next few years.

The potential comes two decades after manufacturer SmithKline Beechamn voluntarily yanked an approved Lyme vaccine for people from the market. While late-stage trials showed LYMErix prevented 76 per cent of infections, an anti-vaccination movement attracted media attention. Amid a flurry of unproven allegations that the shots led to side effects of autoimmune arthritis, sales of the successful vaccine shrank.

Henry, whose backyard backs onto the woods, says her family would jump at the chance to get a vaccine.

“We were outdoors a lot and active with the kids, but (the ticks have) stopped us,” she said. “My husband got a hunting license and when I got sick he said, ‘I’m not going out.'”

She wonders how eager others might be to get vaccinated.

“I do know people that, even though they know what I’ve gone through, they’re still not as cautious as I was when I was trying to prevent getting Lyme in the first place. I don’t know how much people will take the initiative to go and get it unless they’ve experienced Lyme firsthand. ”

On the flipside, Lugar and other local Lyme disease advocates worry a vaccine might make people complacent about taking other preventative measures, such as applying insect repellents, tucking pant legs into socks, avoiding high grass and doing regular tick checks. They also note the vaccines might not protect against possible co-infections of other diseases transmitted by ticks.

Vaccinating mice

Vett Lloyd, a tick and Lyme researcher at Mount Allison University in Sackville, NB, is most excited about vaccines that treat wild animals – in particular the white-footed mouse and other small rodents that are the main source of Lyme bacteria carried by ticks.

“It sounds a bit bizarre. It’s not like there are going to be a bunch of people running around wildlife catching mice and giving them little shots, ”said Lloyd, who runs the Lloyd Tick Lab from the university. “It’s how we deal with rabies, for example. You put the vaccine in bait and you scatter it around the forest. ”

There will still be ticks, but the idea is if there’s no disease in the mice, the ticks won’t be passing on the disease.

Lyme disease is a rarity for deer. If they do get it, their immune systems are good at fighting the disease off quickly, so vaccinating them would be of no help. But controlling the population is key because their blood is a major feeding ground for ticks to produce more ticks.

“A female that’s had a good full blood meal can make about 3,000 or so eggs,” said Lloyd. “That’s a lot of little baby ticks.”

Debilitating symptoms

As is typical in Lyme cases that get diagnosed late, Henry has a variety of debilitating symptoms, which run the gamut from excruciating pain and extreme exhaustion to mobility issues, insomnia, lack of appetite, severe migraines and trouble remembering things.

“I’m someone with a bunch of energy. I live an active lifestyle, ”she said. “And now I can barely get out of bed. It’s destroyed my life. I have a toddler at home I can’t look after and I’m off work. ”

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