Nicole Legros says her best friend Maverick is who gets her up in the morning.
He is also her reason for going outside on walks, but not without being prepared. She dresses in long sleeves and long pants, even just to walk on Niagara-
on-the-Lake sidewalks or roads, staying off the grass. She also sprays an all-natural tick repellent on herself and on Maverick.
Legros has been living with late-stage lyme disease for many years, and the most important lesson she has learned is the importance of prevention — there has been no escape for her from this debilitating disease, and she knows she’s not alone.
There was a time when Legros believed a diagnosis that would explain her years of living in pain and the long list of symptoms severely impacting her life would be a dream come true, and the beginning of a journey to wellness.
Instead, she says, it’s felt more like a never-ending nightmare.
Now 28, Legros was just eight years old, an active young girl who loved figure skating, soccer and swimming, when back and joint pain, fatigue, and even memory loss and brain fog began to plague her.
Her first visit to Sick Kids Hospital in Toronto was a result of severe lower back pains. She was diagnosed and treated for an auto-immune disease — both lupus and rheumatoid arthritis were suspected at some point. Even a rare form of cancer was suggested. Her family was told she would be in a wheelchair by the age of 20.
In 2018, after years of hospitalizations and treatments, working with a pain specialist and being referred to specialists for testing with no clear diagnosis of what was causing her pain and nothing that stopped it, Legros met a local chiropractor who recognized the signs of lyme disease — he was suffering similar symptoms himself.
It was not a surprise that a test given in Ontario came back with a negative result — that is a common occurrence, because the testing available in Canada has to be within a short time after contracting the disease, and it is often years rather than months before lyme disease is considered, explains Legros — in her case, years, before she had the test done.
There are tests available in Canada now, she explains, that can be purchased, and sent to the U.S., which is what she did. With a positive result, the next step was to do more detailed testing through a lab in Germany that she says is recognized world-wide for providing information about co-infections and co-viruses that ticks carry and transmit, of which she was found to have several, Legros says.
With those results, things started to fall into place for her and her parents. She had had a bad bite when she was eight, while playing on the escarpment with a friend who lived on York Road, she says. It was severe enough for her parents to take her to a doctor, but they were told it was nothing to worry about. Looking back, her parents say she had the typical bullseye rash, but they didn’t see or remove a tick — she hadn’t felt a bite, which is not unusual, she explains. Although, she adds, it could also have been a spider bite — ticks are not the only insects that carry lyme disease.
Once armed with positive test results, Legros began her search for answers.
She was referred to a lyme-literate naturopathic doctor in Fonthill — ‘lyme-literate’ a term used to distinguish between those in the medical community who recognize, understand and treat the disease, and the many who do not, including her own family physician in Virgil, she says, although the lobby offers a brochure about it.
After her diagnosis she continued to see her naturopath, started a long course of an oral antibiotic typically used to treat lyme disease, and continued working with her chiropractor using holistic treatments.
She also sought treatment in Toronto, trying blood treatments, vitamin IV therapy, stem cell therapy injections, something called spinal freezing — anything that might help with the symptoms she was still experiencing, she says.
But instead of getting better, her health was declining — she was nauseated, vomiting and losing a significant amount of weight.
There are still few doctors in Ontario who will treat lyme disease, says Legros, and they are difficult to see, even with a referral and a positive result. One in particular she sought out, she was told, was overloaded with patients and not taking on new ones.
By the end of 2020, she says, she realized her treatments were not helping.
At one point during her treatments, she says, she felt so sick she told her parents she felt like she was dying.
She had continued doing research, looking for help, she says, sick of being doubted. “This is a disease that doesn’t show on the outside. I was bullied, I was treated differently. Even my friends doubted me. I didn’t want to be treated differently, I wanted to be like everyone else.”
She finally found a highly recommended doctor in Washington D.C. at a specialty clinic, who agreed to see her. Driving to Washington with her father and seeing that doctor for the first time, she says, was when she finally felt understood by a medical doctor.
Thus would begin what was expected to be a long journey of IV antibiotics for late-stage Lyme disease, travelling to the U.S. every other month.
Border crossings were easy — she has the paperwork to say she is seeing an American doctor and border guards are accustomed to Canadians with medical issues crossing. “I’d just say I’m headed to see my lyme disease doctor, and they’d wave us on. They’re so used to hearing that.”
Even during the pandemic, the crossings were quick, although she and her father, who accompanied her, often had to stay in a hotel for several days.
“If I had an appointment on a Tuesday, and another on a Friday, we weren’t able to come home and go back again — we had to stay there,” she explains.
However, a few months into her IV treatment she became very sick, and was admitted to a local Niagara hospital with severe stomach pain. Doctors didn’t recognize what was happening, she says, and told her to go back to the U.S. She finally found one doctor who helped her gain back some weight, and when she was well enough to return to the U.S., doctors recognized the problem was with her gall bladder, damaged from lyme disease, and she was able to have surgery there to remove it. “I would have died without that surgery,” she says.
After a total of seven surgeries in the U.S. including two for reconstruction after one that was botched, all related to problems with eating and digestion, she thought she was ready to return to her IV antibiotic therapy. But her body had a different idea. By that time, she says, her body could no longer cope with the heavy regimen, and instead of her health improving, she was becoming increasingly ill.
She still has problems with digestion, has little energy, and is constantly in pain. Her family is now looking at other, better methods that have higher success rates, says Legros, but they are only available in Florida or Germany — she is still researching and talking to others who have gone that route, trying to decide which is the better option.
“It’s a difficult decision,” she says, “and we have to make it as a family. There are no right or wrong answers — what works for one person might not work for others.”
For either option to be possible, her father, Rick Legros, has set up a GoFundMe page. On it is the story of her journey since that bite when she was eight — it’s such a long and complicated series of appointments and disappoints, it was hard to keep it short, she says. It also describes the treatment she is seeking as a “hybrid of conventional and alternative medicine that promotes holistic healing for the patient, while addressing underlying infections and toxicity.”
That bite 20 years ago, she says, has cost her family about $350,000 USD. They can’t go any farther without help, and there are still no options for treatment in Canada.
The number of reported cases in Canada, based on Canadian testing, has jumped from 144 in 2009, the first year of surveillance, to 3147 in 2021 with more than 17,000 cases since 2009, but as the government website says, “There’s under-reporting because some cases are undetected or unreported.”
The Niagara Region reports a small number of reported cases on its website — less than five in the first quarter of 2023, with comparable numbers in 2022. It also says “reportable disease data are stored in and retrieved from the provincially mandated Integrated Public Health Information System. Only confirmed cases are provided. Infectious disease data may be underreported due to testing availability, case and contact management guidelines and delays in data entry.”
In an emailed response to questions from PelhamToday's sister publication the NOTL Local, Niagara Region Public Health says there were “24 confirmed or probable lyme disease cases in Niagara in 2022.”
Case definitions are provided in the Ontario Public Health Standards through the Ministry of Health, the region says. “A confirmed case has several potential definitions and a positive test result may not always be necessary to be considered a confirmed lyme disease case. Testing information/approaches are provided by Public Health Ontario.
Legros’ advice to others is not to take a chance on getting lyme disease in the first place and to take precautions when outdoors. While those measures are typically aimed at specific areas, such as when hiking in long grass or bogs, she is convinced tick prevention is necessary even if out walking her dog on pavement — ticks can be everywhere, not always hiding in tall grass, she says.
NOTL Lord Mayor Gary Zalepa shared his experience with ticks and lyme disease with The Local. He recently volunteered for the Glendale area cleanup, and walked around the stormwater management pond picking up garbage.
While still in the park at the end of the cleanup, he discovered two ticks on his body, and he wasn’t the only volunteer to be brushing them off. He found two more when he got home.
Finding the ticks didn’t surprise him, he says. “I went into what is literally a bog. That’s where these guys live.”
He had on long pants, but short sleeves. “I should have worn long sleeves,” he realized.
He agrees we are hearing more about ticks, and says he believes both the region and municipalities can play a role in prevention by doing more in the area of awareness and education.
He says he had some experience with a friend whose son had lyme disease. This was several years ago, “and it took quite a long time to identify lyme disease. The medical community may not be thinking of that. It’s very scary — if the medical community had been looking at it, if it had been identified much sooner, he would have got treatment much sooner and had much less impact.”
Zalepa says he hopes “it’s getting better” as far as diagnosis and treatment locally, but doesn’t have any way of knowing if it is.
“I do know if I had young kids playing outside now I’d be sure to be checking them. And we weren’t thinking of that 20 years ago.”
For more information on prevention visit lymeontario.com.
To help Legros, donations can be made at gofundme.com/f/46phdx-help-nicole-beat-lyme