Terriline Porelle of Cocagne, New Brunswick says she is puzzled why health authorities no longer seem interested in finding out why she’s ill.VIKTOR PIVOVAROV/The Globe and Mail
Terriline Porelle is puzzling over two mysteries. The first is: what’s plaguing her? For the past two years, the formerly healthy, active, 34-year-old resident of Cocagne, N.B. has been experiencing many strange and alarming symptoms, including muscle twitches and blurred vision, auditory hallucinations, brain fog and loss of balance and co-ordination.
The second mystery is why health authorities no longer seem interested in finding out why she’s ill.
“It’s like nobody’s really looking to see what’s going on and it doesn’t make any sense,” she said.
Ms. Porelle is one of 48 people who were initially identified between late 2020 and May, 2021, as being part of a cluster of patients in New Brunswick who all had a mysterious brain illness, which the province referred to as a “potential neurological syndrome of unknown cause.” Doctors and researchers puzzled over the cases for months.
Then, in a February report, the province announced that there was no mystery illness, and that its investigation into the matter had concluded. An independent oversight committee had found that the 48 patients were likely suffering from various previously known diseases that had simply been misdiagnosed, the report said. But some of the patients and their families say their suffering remains very real – and that it’s made worse by the fact that they’re no closer to getting answers about what’s causing it.
The province’s report said neurologists on the oversight committee had provided potential alternative diagnoses for 41 of the 48 patients, including Alzheimer’s disease and other types of dementia, post-concussion syndrome, chronic severe anxiety disorder and cancer. It recommended that patients contact their primary caregivers for referrals to further treatment, or that they seek help from a specialized clinic in Moncton called the Moncton Interdisciplinary Neurodegenerative Diseases (MIND) Clinic.
Patients and their family members who spoke with The Globe and Mail said they were already being seen at the MIND Clinic even before the oversight committee began its review of cases. They had already taken the tests the committee recommended, and the alternative diagnoses the committee members proposed had already been ruled out.
And some said they no longer wish to continue their care at the MIND Clinic, now that it has replaced their neurologist, Alier Marrero.
Dr. Marrero identified 46 of the 48 cases of the mystery illness, after patients with inexplicable symptoms were referred to him by other doctors. And he was also the first to raise concerns publicly about the phenomenon. This summer, the Horizon Health Network, which oversees the clinic, said he would no longer be working at the clinic as of Aug. 1, and gave no reason why.
Derek Cuthbertson, 65, was included in the initial cluster. He said recently that he still doesn’t know the cause of his illness. “My logical mind says if you don’t have an unknown disorder, you have a known disorder,” he said. “Okay, what is it?”
Mr. Cuthbertson, who lives in Hopewell, N.B., said he has been tested for more conditions than he can keep track of. He has continued to see Dr. Marrero periodically. But all health care providers can do for him is monitor his condition.
“They can’t treat what they don’t know,” he said.
Unlike Ms. Porelle, Mr. Cuthbertson said his illness hasn’t affected him physically, aside from making him want to sleep all the time. One of his main symptoms is a dramatic loss of empathy. He said he manages to get through social interactions only because he knows from prior experience how he’s supposed to act, but that being around people has become a source of aggravation for him. He said he has also has lost his short-term memory.
Since Mr. Cuthbertson now has, as he put it, “no feelings at all,” his condition causes him no suffering. But he knows it’s terrible for his wife to live with. And his symptoms, he said, are getting worse. He said his stepdaughter, age 37, started experiencing unexplained symptoms too, about two years ago, and was also seeing Dr. Marrero. She was not part of the initial cluster.
In Ms. Porelle’s case, the oversight committee came up with an alternative diagnosis. It suggested that her symptoms were being caused by post-traumatic stress disorder. She said she was incredulous when a neuropsychologist, whom she met at the committee’s request, hypothesized that she had PTSD after evaluating her. She could think of no trauma that could have caused it.
Ms. Porelle said the committee then sent a letter to her family doctor. The letter recommended that she see a specialist for PTSD. But soon after, her doctor received another letter from the committee. It said that, after a review, the committee did not think she had PTSD after all. It advised her to get tested to rule out HIV and paraneoplastic syndrome, a rare condition related to cancer.
She said she is now in the process of doing the recommended tests and scans for those conditions, even though her family doctor had already ruled them out. And she continues to see Dr. Marrero, who has also ruled out the illnesses.
“It’s a waste of time for me. It’s a waste of resources for the province,” she said. “There’s such a lack of health care in this province and you have people waiting to get tests done, and they’re wasting time repeating tests that have already been done on me.”
In the meantime, Ms. Porelle said, her condition is getting worse. What started as a stabbing pain in her left leg in 2020 now includes extreme brain fog, difficulty sleeping and spasms in her right hand. And she has experienced phantom sounds, such as indecipherable whispers that wake her up at night.
Previously an avid cyclist, snorkeler and hiker, she can no longer use her bicycle without losing her balance. And she said she can no longer perform her job as a dental receptionist, because of the severity of her lack of memory and concentration. “I, at one point, forgot the letter Q,” she said.
For siblings Jill and Tim Beatty, the search for the cause of the illness that killed their father, Laurie Beatty, is as urgent as ever. Mr. Beatty died in May, 2019, at age 82. His case was later included in the initial cluster.
Jill and Tim said an autopsy report noted signs of Alzheimer’s disease in Mr. Beatty’s brain. But this explanation for his illness and death did not make sense to them. His doctors had ruled out Alzheimer’s disease while he was alive, and a spinal tap had shown he did not have the disease, they said.
Mr. Beatty’s condition had declined rapidly after he first showed signs of illness in January, 2019. While he had seemed more quiet than usual to the siblings weeks prior, he began suffering delusions that people had cheated him out of his construction company decades earlier. Suddenly, he lost his ability to locate items at a local hardware store where he worked as a retirement pastime.
He became uncharacteristically paranoid, violent and aggressive, both Jill and Tim said. He also experienced hallucinations and problems with balance. His eyes constantly moved around rapidly, and he grabbed at things that weren’t there.
“The downhill spiral was fast and violent,” Tim said. Mr. Beatty died about five months after he first began acting strangely.
Jill and Tim said they were relieved at first when they learned their father’s case was being included in the cluster. They were heartened that the province and oversight committee were investigating, and were hopeful that researchers would conduct tests of water and soil for environmental toxins that might have been responsible for the illnesses. They were confused and frustrated when those tests were not done.
Like other cluster patients and their family members who spoke with The Globe, Jill and Tim said they are not satisfied that the province’s probe – which included a questionnaire and the oversight committee’s review of cases – was sufficient. They said they will continue to press for answers.
Knowing why their father died will provide them with a sense of closure, they said, and it will also give them peace of mind. For now, they worry about whether there is something in their environment, or in their genes, that could sicken them as well.
Steve Ellis is still seeking explanations for the illness of his father, Roger Ellis, who was included in the cluster. Roger’s health rapidly declined after he first became ill in 2019. His symptoms have included delusions, aggressive and repetitive behaviours, seizures and weight loss.
Steve Ellis, left, with his father Roger, who is among the 48 cases with the mysterious brain disease in New Brunswick.Courtesy of Steve Ellis/Supplied
Like other patients and family members who spoke to The Globe, Steve described Dr. Marrero as caring, ethical and committed to his patients. He said he will have his father continue to see Dr. Marrero independently of the MIND Clinic. Dr. Marrero is the only neurologist he trusts, he said.
In June, 2021, Dr. Marrero told The Globe he required approval from the Vitalité Health Network, a provincial health authority, for any new communication with the media. Since then, he has not responded to requests for an interview.
New Brunswick’s Department of Health did not provide specific answers to The Globe’s questions, including about what steps it would take to help those still seeking explanations for their illnesses.
In an e-mail, the Department of Health said all cluster patients or their designates had received letters informing them of the oversight committee’s general findings, and were encouraged to contact their care providers or the MIND Clinic.
The department said the oversight committee’s objective was not to diagnose and manage individual cases, but to investigate whether cases were part of a common cluster of unknown cause. If a cluster was thought to exist, further investigation would have been warranted, it said, but the committee concluded there was no evidence of a common cluster.
“That meant the work of the committee and province was completed, and follow-up care and the management of these individuals now resides with their primary care providers.”
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