‘Good first step’: N.B. mystery brain disease patients welcome new investigation

FREDERICTON — Melissa Hawkes began to feel unwell during a visit to a friend’s house in March 2021. All that she remembers before blacking out is that she went to the bathroom. When she opened her eyes, she found herself lying on the floor, her friends and fiancée looking on worriedly.

“They’re saying, ‘Oh no. You had a seizure,'” said Hawkes, 27, who lived in Moncton, N.B., when the symptoms began. “I’d never been to this person’s house before. I was just meeting them with my fiancée. I was so embarrassed.”

What started off with “mild” problems, she said, such as intense exhaustion and nausea, has turned into a serious illness: she had a second seizure in 2023, and has developed nerve damage in her wrist and necrotizing gingivitis — a painful gum infection.

She is one of nearly 400 New Brunswick residents who suffer from what the province calls a “neurological syndrome of unknown cause” — a mystery brain disease that seems to mostly affect people living in the Acadian Peninsula and Moncton areas. Her fiancé, Sarah Nesbitt, is also afflicted.

In February 2022, the Health Department under the Progressive Conservatives said a team of six neurologists and other health experts found no evidence a cluster of cases existed.

But patients, who reported symptoms such as memory problems, balance issues, behavioural changes, muscle spasms and bursts of intense pain, said the province should never have closed the probe. In response, the Liberals campaigned on a promise to reopen the investigation, and since winning the October election, New Brunswick’s new government is back on the case.

A lot has changed since 2022, Health Minister John Dornan said in a recent interview, noting that there were fewer than 50 patients who had presented with symptoms at the time. Now, he says, there are more than 400.

The Health Department’s report in 2022 said that 46 of the 48 cases were referred to the government by a single neurologist — Dr. Alier Marrero — and for 41 patients, experts found possible alternative diagnoses: Alzheimer’s disease, various forms of dementia, post-concussion syndrome and cancer. Ten of the 48 patients died and six had autopsies completed. “These diagnoses included such conditions as Alzheimer’s disease, Lewy body disease, or cancer,” the report said of the autopsy results.

But Dornan said that with the rise in the number of people presenting with symptoms, the Liberal government wants to look “deeper and more broadly.”

“We have not yet been able to easily identify a common denominator for a treatment, and that’s a real big challenge,” said Dornan, whose mandate letter from Premier Susan Holt asks him to conduct “a scientific review into the mystery brain disease.”

Marrero, who first began investigating the cases in early 2020, has given access to his files to provincial and federal health-care teams, including experts at the Public Health Agency of Canada, Dornan said.

Marrero did not return a request for an interview.

“It’s a new phenomena,” Dornan said. “Whether we characterize it as a disease or a syndrome or some other common denominator, our first step is to understand what is happening.”

“We’re doing that right now. So (the process) has begun. It has more than begun.”

Federal Health Minister Mark Holland called it a “great collaboration.”

“The Public Health Agency of Canada is deeply engaged. We’re working through that process to be able to understand what’s going on, and to make sure that we have the data and evidence to really understand what is occurring, and then how do we go after it,” he said.

Hawkes said she and some of the other patients have called on the government to test for “environmental toxins” such as the weed killer glyphosate. In January 2023 Marrero asked federal and provincial health authorities to look into the link between their symptoms and the herbicide.

Dornan said the investigation will be done one step at a time. “So we … find out what the common denominator could be first, before we would look at the environment, some of the testing that has been done on patients who are under the care of Dr. Marrero does include environmental factors. We’ll be looking at all that.”

Hawkes, who is also one of Marrero’s patients, called the reopening of the investigation a “good first step.”

But, she said, “I’m scared that it’s taking so long. People have died … I’m terrified, absolutely terrified,” she said.

Meanwhile, her 41-year-old fiancée said a few of the symptoms have started to ease, five years after they started.

The couple moved to a new town — Canaan Station, N.B. — and Nesbitt made lifestyle and dietary changes. Nesbitt has also started playing video games to improve hand-eye coordination. “There are some things that are still regressing or still degenerating, but many of the symptoms have started to relieve themselves,” she said.

She still has seizures and tremors, but they’re not as bad or frequent. She’s also able to stand for longer than a “couple of minutes,” and the nerve tingling on one side of her body is not as frequent. “A lot of things did get better. I’m just not better yet.”

It has been a long road since the government considered the matter closed in 2022.

“They are listening,” Nesbitt said of health officials. “We just need to now see the action.”

This report by The Canadian Press was first published Jan. 19, 2025.

Hina Alam, The Canadian Press