Eight years ago, Dena Palamedes knew something was wrong with her body, even when doctors couldn’t tell her what it was.
“I was extremely fatigued, she said. “I couldn’t keep up with my friend walking, cycling. I had stomach pain that was keeping me up — and I couldn’t close my hands. I had hand pain and from there, it just got worse.”
Palamedes believes her illness may trace back to a tick bite during a trip abroad in 2018.
But it would take years, countless specialists and endless appointments before she got a diagnosis: Lyme disease.
“Then the question was what do you do and how do you get better? It took until the end of May 2021 to find someone who would prescribe antibiotics.”
For many, Lyme disease is caught early — and treated quickly — with a standard course of antibiotics.
But for others like Palamedes, whose diagnosis came much later, recovery isn’t straightforward.
They’re often left with lingering and sometimes debilitating symptoms, a condition known as post-treatment Lyme disease syndrome — an area where scientific consensus and clinical guidance remain limited.
It’s that gap in care that patients like Palamedes are trying to address.
On Feb. 2, a free public panel at the Canadian Museum of History in Gatineau, Que., will bring together clinicians, researchers and experts from across Canada and the United States.
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The panel will focus on navigating complications of Lyme and translating research, clinical practice and lived experience into better patient care.
A key issue patients say they face is misbelief.
“I think one of the words of the year in recent years is gaslighting — medical gaslighting,” said Dr. Tiff-Annie Kenny, an assistant professor in the faculty of medicine at the Université de Montréal.
“The fact of patient symptoms not being believed. Whether it’s the veracity of symptoms or their severity or the association with the infection that the patient believes or perceives to be associated with their illness.”
Lyme disease, Kenny explains, can affect more than just joints. It can also affect the brain and even the heart.
Dr. Adrian Baranchuk, a cardiologist and electrophysiologist based in Kingston, Ont., says some of those complications could be caught early with simple screening.
“To introduce the idea that searching for cardiovascular manifestations of Lyme disease in every suspected Lyme disease patient takes approximately five to six minutes and it costs us about $2 or $3 to do an electrocardiogram (ECG),” said Dr. Baranchuk. “And we could be saving the cardiovascular system of an otherwise healthy individual. It’s worth it.”
Another patient partner behind the panel is Terry Wainwright of St. Thomas, Ont.
She was diagnosed with Lyme disease in 2017 and says it was a long and frustrating struggle to access care, which ultimately pushed her to educate herself and become involved in research networks.
“We have legislation in Canada that allows for assisted death, and there have been patients diagnosed with Lyme disease that have had access to that service, but unable to get service in helping to manage their chronic disease,” she said.
For patients, speaking out is about reaching others who may still be searching for answers — and pushing for a health-care system that better recognizes their experiences.
“It’s a difficult road getting treatment, but believe in yourself and believe in what your body is telling you,” said Palamedes.
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