Small community demands answers as mysterious brain disease leaves residents paralyzed

A mysterious brain disease has caused 40 deaths and plagued hundreds of people in a small community for more than a decade. 

The new leader of the Canadian province of New Brunswick, Premier Susan Holt, has reopened an investigation into the illness that causes dementia-like symptoms and partial paralysis. 

Since DailyMail.com last reported on the cases, there have been over a dozen more who – affecting an estimated 450 people in the area, and mainly people on the Acadian peninsula. 

Local authorities had previously put the total case count at just 48 people. 

There have been 40 deaths, according to the premier. 

The Public Health Agency of Canada, a national organization under the purview of Prime Minister Justin Trudeau, had previously offered $5million in funding to the province to investigate the cases. 

The New Brunswick Public Health department conducted its own investigation without utilizing the funds, and concluded there was no cluster of brain disease in the area. Rather, the department said the patients had been misdiagnosed and actually had dementia and cancer.

Officials ceased investigations. 

The number of cases of the condition is disputed. A Canadian doctor said he’s seen around 450 patients that fall within the guidelines of the disease. In 2022, a government run investigation concluded there was no link between the 48 cases they included in their study

Now, Premier Holt announced she plans to relaunch an inquiry, using the $5million initially offered by federal authorities. 

She said: ‘I think we need to be doing everything we can to shed some light on this and find a way to stop what’s making people sick.’ 

This adds fuel to a vocal minority of health officials in the area, led by New Brunswick neurologist Dr Alier Marrero, who have publicly insisted something sinister is going on in the area. 

Premier Holt said: ‘The inexplicability of it is agony. Not knowing what’s caused it, what’s going to happen next, what the treatment path is. 

‘But knowing that it doesn’t seem to be treatable and people around you have died from this is terrifying. So, I think we need to be doing everything we can to shed some light on this and find a way to stop what’s making people sick.’ 

The unknown neurological disease, which was deemed The New Brunswick neurological syndrome of unknown etiology, causes people to develop problems with walking, balance, coordination, hallucinations, sleep, focus, memory and brain fog. 

The government was first notified of the cluster of diseases in late 2020 by the Dr Coulthart’s Creutzfeldt-Jakob Disease Surveillance System (CJDSS) when 40 residents were suffering from mysterious neurological symptoms, which presented similar to Creutzfeldt-Jakob disease.

CJD is a rare fatal disorder similar to mad cow disease that leads to rapid brain deterioration and muscle problems. 

However, an independent oversight committee concluded a year later the patients actually had known illnesses. 

But emails leaked two years after the close of the investigation revealed Dr Michael Coulthart, the head of a surveillance system, said: ‘My scientific opinion is that there is something real going on in NB [New Brunswick] that absolutely cannot be explained by the bias or agenda of an individual neurologist.

‘A few cases might be best explained by the latter, but there are just too many (now over 200).’ 

By a year later, 48 patients had been identified as part of the cluster. Most of the cases are clustered around Moncton, New Brunswick, a town with a population of 85,802. 

Many of the patients were referred to the Moncton interdisciplinary neurodegenerative diseases (MIND), where they were treated. MIND, which was formerly affiliated with Dr Marrero, placed the number of patients near 450 based on symptoms. 

This included Luc LeBlanc and Cody Gallant, who are some of the youngest residents suffering from the debilitating disease. 

LeBlanc, 39, was previously healthy, but has now been told by doctors his brain is ‘like somebody of an 80-year-old’, CBC reported.

He was one of the 48 patients that the government included in the cluster and has now had to stop working because of muscle spasms and brain fog. 

Luc LeBlanc, who has mobility issues and can no longer walk, and was counted as part of the government cluster. Cody Gallant was also treated at the MIND clinic. However, public health officials do not recognize him as part of the cluster. He can’t sleep, has muscle spasms and hallucinations

Gallant, 21, was a former high school football player, but he now has problems sleeping, has severe headaches, hallucinations and difficulties with coordination. 

He was not one of the 48 patients the government included in the cluster, but according to the MIND clinic, he has the condition.  

Prior to Premier Holt’s statement, the official position of the New Brunswick government has been the cases are not connected or linked to one cause. 

Dr Marrero is one of the only physicians who has publicly pushed back against this stance. 

He went so far as to conduct his own blood tests of some of the New Brunswick patients – finding that pesticides found within each of their blood could be the cause behind their illness. 

Dr Marrero told The New York Times Magazine ‘I am not concluding that this is the cause of what is happening.’

But, he added: ‘It is something that is telling me that something is wrong with the environment they live in.”

In December 2022, he found 90 percent of the patients he tested had elevated levels of an agricultural chemical called glyphosate in their blood.

He cautioned this could merely be commonplace in the area, and it’s not possible to conclude anything from these blood tests alone. 

In this area of New Brunswick, a number of chemicals – including glyphosate – are used to keep local forests healthy.

Glyphosate, an herbicide and the active ingredient in Monsanto’s Roundup, has been scrutinized by the public for decades.

Terriline Porelle was at work during the summer of 2020 when she had a sharp pain in her leg. Today, she has trouble walking and completing daily tasks without the help of her partner. She said she hopes that Premier Holt’s investigation will find answers 

Some studies link it Non-Hodgkin’s lymphoma and others link it to an increased risk for developing Parkinson’s.

It’s banned or restricted in parts of Canada. In Quebec, the herbicide is banned in forest management. In Vancouver, there is a ban on using the produce in public parks and outdoor gardens.

But not all health organizations agree the product is toxic.

The US EPA has repeatedly affirmed its approval of glyphosate. The most recent review of the product in 2020 stated: ‘There are no risks of concern to human health when glyphosate is used in accordance with its current label.’

It’s still used across North America. In New Brunswick, it’s used to maintain the forests.

Aside from pesticides, some have suggested the unknown illness could have to do with the local seafood supply. 

Many coastal New Brunswick residents reportedly eat fish caught in the area, and the economy in part depends on aqua-tourism. 

Toxic algae blooms, driven by pollution, sometimes pop up in the area, and the fish that feed in these ecosystems can sometimes be full of neurotoxic chemicals, linked in other parts of the world to Parkinson’s-like diseases. 

The lack of an explanation has been frustrating for patients in the cluster like Terriline Porelle. Porelle, who used to be an active person, told The Guardian she now has difficulty controlling her hands, problems with memory and walking. 

She only eats frozen meals because she is no longer able to cook for herself and has problems completing tasks.  

She said Premier Holt’s investigation is a welcome change, and hopes it will find something that explains her symptoms. 

Porelle said: ‘I am hopeful that Premier Holt will do the right thing by us patients and the people of New Brunswick.’