The Decibel - Medical mystery in New Brunswick leads to life-changing symptoms

Episode Date: April 6, 2023

Insomnia, dizziness, hallucinations – these are just a few of the life-changing symptoms that dozens of people have reported having in New Brunswick. After several years and a provincial investigation, patients are still left wondering what is going on. They want the federal government to step in and examine their situations further.The Globe’s health reporter Wency Leung joins the podcast to explain the fight patients have on their hands to get answers.Questions? Comments? Ideas? E-mail us at [e-mail]

Till 2020, I was active. I loved to walk, I loved to read. Carol Clark is 77 years old, and in 2020, she was living in Moncton, New Brunswick. I was as active as my daughter, and she's 53 now. So I could do things, I could run three levels of the house, vacuum, clean, you know, just busy. The garden, be out in the fresh air. And then it just, something happened. And I kept saying, it's like my nervous system shot. The hospital and walk-ins kept saying, you've got a flu.

There's a lot of people with a flu. Maybe you've got this double flu, whatever that was. I had so many bracelets from the hospital, it filled both hands. Carol is part of a medical mystery in New Brunswick. She's one of an initial group of 48 people sick with an unknown neurological disease. This could be your child, your mother, your sister, your brother. Tomorrow you could wake up with this.

The province has investigated, but several patients and their families want the federal government to do their own investigation. This month, they renewed those calls. We want the research. We don't want the lies anymore. If the provincial government can't do something, the federal has to step in and say, look at this, this is not right. Today, Globe Health reporter Wen-See Lee-Young, who's been following this story, is on the show. I'm Mainika Raman-Wilms, and this is The Decibel from The Globe and Mail. Wensi, thank you so much for being here today.

Thanks for having me on. I want to just start by talking about really what it's been like for people who are dealing with the realities of this medical mystery in New Brunswick. What kind of symptoms are people having? Their symptoms have been kind of a range of psychiatric issues like anxiety and depression and irritability. Many people have said that they've had pain, have lost tremendous amounts of weight and sort of muscle loss. Many of them also suffer from insomnia or like other kind of sleep problems. And, you know, there's really just sort of a constellation of other things like hallucinations, visual hallucinations, auditory hallucinations, loss of balance and coordination, and also like sort of

tremors and that kind of thing and weakness. Wow. I mean, some of these, these sound like really fairly dramatic things for people to have to deal with, like hallucinations, insomnia, and all these other neurological conditions that you're talking about. These are really life-changing things. What's been alarming for the patients is how suddenly they've kind of progressed. Some of these patients have been, you know, completely healthy and active. And then, you know, a year or two later, they're kind of not even able to do the sort of activities that they used to do. Yeah. So I know you've actually talked to some people,

Wensi, who are experiencing these kinds of symptoms. Can you tell me about them? Yeah. Last summer, I talked to Teraline Perel, who was formerly really healthy and active. She was in her early 30s when symptoms began. And she started getting like sort of muscle twitches and blurred vision. And that's kind of progressed to having like auditory hallucinations and brain fog and lack of balance and coordination. So, you know, she used to be like a really active cyclist and hiker. And she kind of got to the point where she couldn't even really do like a lot of the sort of day-to-day activities. She couldn't work anymore. You know, she had trouble

cooking for herself and had trouble even just navigating her around her own house. Like she'd bump into walls and things and lacked the coordination and balance to get on her bicycle anymore. Wow. And so it sounds like there's a range of different things people are experiencing, but is there something that I guess links them? Like, is there similar in terms of something that all of these people are experiencing together? Well, I think a couple of things are pretty concerning to the neurologist who is seeing them. Dr. Aliye Marrero, he's based in Moncton,

and to the patients themselves is how quickly the symptoms have developed over time. The other thing that's in common is like the things like the lack of coordination and loss of balance. Okay. And in terms of like the range of patients, like what are we talking about here in terms of age, gender? Is it kind of all across the board? There are, you know, male and female patients and the ages ranged from between 18 to 86. Wow. So huge range. Yeah. Okay. And so it sounds like these symptoms are pretty serious. These are, this is life-changing for these individuals. How serious has it gotten though though? Has anybody died from this? There have been actually six people, at least, who have died from that original group of 48 patients.

Wow. Okay. And can we say their deaths are attributed to what was going on with these neurological symptoms, or do we know? I can give you an example of one case. Jill and Tim Beattie, their father, Laurie, died in 2019. He was 82. With his case, you know, he kind of was fine, was even working part-time, and it was kind of really sudden over sort of a Christmas break. He started behaving strangely, very out of character. He started really rapidly developing all sorts of other symptoms.

And by May after that year, he was dead. Let's rewind here, Wensi. When did all of this start? When did the first cases appear here? It was around the fall of 2020 when Dr. Morrow had sought help for the cases that he was seeing. So it was kind of retrospectively, they started looking at unusual cases and kind of went back to the first case that kind of seemed to fit in with this group that occurred in 2015. These cases sort of came to the public attention in early 2021. And that was because of a memo that was sent to New Brunswick physicians about

to watch out for these potential cases and watch out for these sort of symptoms. And we know they're in New Brunswick, but I guess what part of the province are they centered around? Yeah, so among that sort of initial group, most were centered around the Moncton area and around the Acadian Peninsula. Okay. So this doctor is starting to notice that all these patients are presenting with these really strange symptoms. What were the initial thoughts in terms of what might actually be happening to these people? Yeah, so what kind of set it off is that he had thought that maybe they were a prion disease, like something like Kurzweil-Jakob disease, which is kind of the human variant of mad cow disease.

So because he kind of suspected that was the case, he had to alert these cases to the federal authorities. Because that's a pretty rare illness that you want reported. Yeah, exactly. It's a rare illness. It's very serious. What they found was that these patients did not have Kurtzfeld-Jakob disease, and they did not have like prion disease. So that kind of led them back to the initial question is like, what is going on with these patients? Yeah. Okay. So they think it's this one disease, they do some investigating, turns out it's not that. What else could it be? Well, that is something that from the start the sort of

clinicians and experts that were involved in this were wondering that you know whether it might be something in the environment could some some sort of environmental toxin be causing these illnesses. And what have they what have they found on that front? One of the sort of initial suspects that some of these national experts had wondered is that could it be something related to blue-green algae? And there's a toxin called BMAA that is created by blue-green algae. Actually, something that was also suspected in a different case of sort of mysterious illnesses that kind of occurred in Guam in the 1940s at the end of the Second World War. There were a bunch of residents in Guam who were experiencing strange sort of atypical neurological symptoms. And their symptoms kind of resembled Alzheimer's, Parkinson's, ALS, but they didn't really fit the typical profile. And so with the Guam case, it kind of garnered a lot of international attention

because the hope was that by understanding what was happening to these people in Guam, they might be able to kind of unlock the skeleton key behind what is behind all these different neurological illnesses that happen kind of elsewhere in the world. Okay. So this is an interesting thing. So it could be blue-green algae. Do we know, I mean, I would imagine this is kind of everywhere though, if you're in a coastal community. Was there, I don't know, something around New Brunswick that would relate to this? Around the Moncton area, there was a big sort of blue-green algae bloom, a really unusual bloom of blue-green algae in 2017.

Blue-green algae can create a lot of different types of toxins, among them BMAA. And we don't really know what the effects of all these different toxins that it creates. And I think this is what is really frustrating for patients is that no environmental tests were conducted. Wow. Okay. Okay. So that's one idea. I've also heard people wondering about pesticide exposure. Can you tell me about that? Yeah. So among the sort of pesticides that were found in some of the patients is glyphosate, which is used as a herbicide. It's used fairly commonly. I think the issue is, you know, whether or not these high levels of glyphosate that have been found in these

patients, whether they're tied to the neurological symptoms that they're experiencing. At least according to Health Canada, you know, glyphosate when used according to instructions, and when it's, you know, found in the levels that are normally found in food, should not pose a health issue. We'll be right back. Okay, so there's some ideas here of what maybe could be causing things. It doesn't sound like there's anything concrete yet. I wonder about the New Brunswick government's response here. So in 2020, 2021, when all of these strange cases started to emerge, what did the New Brunswick government do? Kind of at the start of when these cases came to light,

there were both provincial and federal experts who were kind of meeting together to try to figure out what was going on. By sort of the spring of 2021, the New Brunswick government said that they were putting together this oversight committee to take a look at these cases. And just before the oversight committee was announced, suddenly the regular meetings that were occurring between the provincial and the federal experts just sort of stopped. Just stopped. Right. So who would have stopped these meetings? According to documents that were provided to us by David Kuhn, who's the Green Party leader in New Brunswick, it appears that Public Health New Brunswick had asked

that these meetings be paused. This makes me wonder, because it sounds like there's people in this province who are clearly sick with something. I mean, wouldn't we want to figure out what's going on here? From the answers that we've gotten from New Brunswick, the idea was that they wanted to ensure that there is, in fact, a cluster. Like that there is, in fact, these cases that were distinct enough from other types of diseases that are already known. So when you say cluster, that's like linking all of these cases together. That's right, that they were all common enough to like be investigated further and were distinct enough from other types of unknown diseases. It sounded like the government was investigating if this was a cluster or not.

Like, where did they land on that? So in February 2022, the Oversight Committee came out with their report saying that they found there was no cluster, that there was essentially like no mystery disease, and that most of these patients they believed had illnesses that were already known, but simply misdiagnosed. Really? Okay. So the province comes to the conclusion that the cluster didn't exist. How does that change the investigation then into what's happening here? Essentially, that kind of put an end to the investigation by saying that there's really nothing to investigate here. Because if most of these patients have a known disease, then there really is no mystery. And thus, you know, there's nothing to investigate further. That's kind of what their answer was.

No need to search for a root cause because there's nothing being caused here, essentially. The oversight committee was not looking at what the root cause was, you know, that they weren't trying to answer the why, but they were trying to answer, you know, simply like, is this a cluster or not? One thing that's been really hard for the patients that I've talked to is that the oversight committee didn't examine the patients in person and gave... That seems like a big thing, like to not actually to say you don't have this, but we're not actually examining you in person in order to actually find out what's happening. Right. And that's what patients that I've talked to have been quite upset about.

They've also sent letters to some of these patients and to their doctors saying, like, we think that this person has like XYZ instead, like, you know, Alzheimer's or maybe post-concussion syndrome or PTSD, Alzheimer's. So what has been really frustrating is all these patients have said, like, no, we actually were tested for all these other things. All these diseases were ruled out. So, you know, you're saying that I have something that is known. Well, what is it? Because it isn't what you suggest it is. So you talked about Terralene earlier, one of the patients.

She was a 30-something-year-old. She used to be really active. Now she has trouble with really day-to-day stuff. What did they say that she had? If not this mystery illness, what is she sick with? For Terrileen Perel, she said that the oversight committee came up with these, like, you know, these alternative diagnoses and said her symptoms were possibly caused by post-traumatic stress disorder. And when she, yeah, PTSD. And when she, when she got the news of this, she's just like, you know,

incredulous. Like, she couldn't believe it because she couldn't think of anything that might have caused,, saying, actually, maybe she didn't have PTSD after all. But it's the letter asked her doctor to to to test her for HIV and this sort of rare condition that's related to cancer. This seems like a very strange way to go about this. When asked, the health department at New Brunswick had mentioned that, you know, the job of the oversight committee was not to actually diagnose the patients. It was to figure out whether, you know, whether this cluster existed or not. I have to wonder, I guess, about the quality of health care here, because from what you're saying, it sounds like these patients are kind of left. They're being given suggestions, but they're not actually being seen necessarily by people giving these suggestions.

It sounds like they're not getting the kind of health care that would actually help them here. Well, that's what is a big issue for them. And they don't feel like they've, you know, gotten straight answers from anybody. And most of the people that I've spoken to are sticking by their neurologist because here's somebody that they feel is actually trying to help and trying to find answers. This is Dr. Marrero. Right. And, you know, that is kind of like another issue. So the MIND Clinic was a specialized clinic set up for these patients. And Dr. Marrero was instrumental in creating the MIND Clinic. Last summer, he was replaced at that clinic, and the patients who were going there were given notice. Okay. And Dr. Marrero, I mean, he sounds like he's been kind of an advocate for these patients. What has he said in response to all of this?

Well, here's the thing. Dr. Marrero has not spoken publicly since the oversight committee was created, essentially. patient's perspective, they are worried that he's being muzzled and they want that the provincial authorities to kind of let him do his thing. Okay. So, Wincy, the report that we're talking about, that was 2022. That was a year ago. We're now in 2023. Are people getting any better? From the patients that I've spoken to, no, like I haven't yet found any patients who are better. Some patients are indeed getting worse. And for other patients, you know, their symptoms are being managed. And are we still just talking about that original group of 48 people then? actually more cases. And these concerns come from the neurologist himself, who has, you know, asked federal and provincial authorities to help him with additional cases. And he's written a letter that the patient group has kind of alerted us to, that there could be like 147 cases. And I've been in contact with some of these patients. And among them are people who are living in the same household.

So far, the Public Health Agency of Canada, PHAC, has said its role is to support the provincial public health agency. But a lot of these patients have said they actually want PHAC to be involved here. So what would it take for federal officials to investigate? So PHAC has said that they have received the province's report and they accept the report. So really, it seems like it takes the province to say, let's reopen the investigation for it to kind of happen again. Just very lastly here, Wensi, you've walked me through what we do know here and what we don't know. And honestly, I'm still kind of left wondering what's actually going on here. Like, you know, is something being covered up or are things being blown out of proportion?

And I mean, wouldn't the New Brunswick government be worried about trust between itself and its citizens? Wouldn't you want transparency and try to get to the bottom of this? At the root of this whole thing is the question of why. Why are these patients getting sick? And the patients want answers to what is plaguing them. Even for family members of patients who have died, there still is an urgency for them to understand what has happened to their loved ones. Because on the one hand, you know, if it's genetic, they want, they kind of

need to know, like if they're at risk of having the same sort of illness, if it's not genetic, and it's environmental, they also need to know, right, is there something that they're doing day to day that might put them at risk of dying like their loved one? So there's an urgency there too. Right. When it comes to trying to figure out like environmental causes, you know, it's a really difficult and arduous process. And, you know, if you even look back at what happened in Guam, we still don't have real answers to what happened there. And so it's possible that we might never find out what happened to these patients. But I think what they really need is to be taken seriously, you know, and what they're asking for is a chance to at least try and find out. Wensi, thank you so much for taking the time to speak with me today.

Thanks so much for having me, Manika. That's it for today. I'm Manika Raman-Wilms. Our producers are Madeline White, Cheryl Sutherland, and Rachel Levy-McLaughlin. Davidrosby edits the show Adrian Chung is our senior producer and Angela Pachenza is our executive editor Thanks so much for listening and I'll talk to you next week