SYDNEY — Rock climbing is one of Melissa Boutilier’s favorite hobbies these days.
But it wouldn’t have been if the Lyme disease she had, which left her confined to a wheelchair within a year, had gone undetected.
“I will always have my heart rate too high because of what happened. Only because I got sick and got pericarditis. It’s always going to be too high so I still take one pill,” said the 33-year-old, who hails from Port Caledonia.
“Besides, I don’t even think I’m sick anymore. It’s not even on my radar, which is amazing because I’ve been told multiple times that it’s not going to happen.”
Now living in Halifax, Boutilier was 25 when she contracted Lyme disease in 2015. At the time, she was happily in her career, about to close on her first home, doing triathlons and biking the Cabot Trail.
A year after her symptoms began in August 2015, Boutilier had to use a wheelchair. In addition to suffering from severe fatigue, she also had severe joint pain, brain fog and painful rashes.
MAIN REASON
As reported in the Cape Breton Post, Boutilier spent two years trying to get help locally. While her family doctor was compassionate and did what he could, Boutilier felt the five specialists were dismissive and uninterested in determining the root cause and focused on treating one symptom at a time.
Because Lyme disease is a multisymptom autoimmune disease, this approach does not work. None of the medical professionals could get to the root cause. Some were dismissive. Something she believes happens to other people suffering from chronic illnesses.
“My rheumatologist over there in Sydney told me to take a vacation,” Boutilier said.
“I was covered from head to toe in these burning rashes that rose up. They were throbbing, so hot and painful, I was covered from head to toe in them and his response was ‘take a vacation’.”
After being connected to Maine-based Dr. Robert Dubock in 2017 at a Canadian Lyme Disease Foundation conference in Halifax, Boutilier began her recovery. Dubocq took her on as a patient, and within a year of the treatment plan she created, Boutilier was 95 percent symptom-free and walking again.
When Boutilier knows that if she hadn’t found Dubock, she might still be sick because she fell through the cracks in the medical system. Five years later, she wonders if others still are.
SYMPTOMS IGNORED
Part of many social media groups for people with Lyme disease or who think they may have Lyme disease, Boutilier sees many people struggling with a diagnosis in Nova Scotia like her.
“Lyme disease is such a strange thing in Canada. In the US, it’s widely accepted that ticks are around, they carry disease, and they can make you sick. And we have to watch out for certain things,” Boutilier said.
“In Canada, when they tell you to go to the doctor, the first thing they’ll say is, ‘Do you have a bull’s-eye rash?’ And if you say, ‘No,’ they’ll say, ‘Well, we don’t have ticks here that carry Lyme disease , so don’t worry about it.’
A spokesperson for Nova Scotia Health provided information to the Post via email.
“According to IDEG (Infectious Diseases Expert Group) guidelines, for early Lyme disease, testing is not necessarily helpful,” said communications advisor Brendan Elliott.
“It is a clinical diagnosis and treatment is started based on the clinical diagnosis by the doctor.
Boutilier didn’t have a bull’s-eye scar, like many others who contract the disease, either not visible because it’s on the head, hidden by hair, or it’s gone by the time medical attention is sought.
According to the Nova Scotia Department of Health and Welfare, symptoms from a bite from a tick infected with the bacteria that causes Lyme disease usually show up after three to 30 days. Severe symptoms usually last weeks to months.
PROVINCE ENTIRE RISK
The first confirmed case of Lyme disease in Nova Scotia was in 2002, and the first confirmed in Cape Breton was in 2014. Advocates believe there were unconfirmed cases years ago.
A 2012 Nova Scotia Ministry of Health and Welfare report on Lyme disease epidemiology and surveillance says there have been a total of 120 cases across the province since the first 10 years ago.
According to the Ministry of Health and Welfare, there are 830 confirmed or probable cases of Lyme disease in Nova Scotia. They were unable to provide the 2020 and 2021 numbers before publication time.
Nova Scotia Health was able to collect data on confirmed or probable Lyme disease diagnoses at the end of emergency department visits in the different areas. They are:
Eastern zone
2020 – 9
2021 – 10
2022 – 0
Northern zone
2020 – 48
2021 – 144
2022 – 10
Western Zone
2020 – 324
2021 – 886
2022 – 23
Central area
2020 – 78
2021 – 158
2022 – 45
Nicole Sullivan is a diversity and education reporter who occasionally covers the healthy beat for the Cape Breton Post.
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