BATH, N.Y., February 3 – “I’ve always been a fighter,” Bryan Tremblay says, and that’s not just a metaphor. Now 35 but still a slight 112 pounds at 5 foot 1, he was a bully magnet as a child and learned early to defend himself. That was an advantage when he wrestled for his high school team.
But now Tremblay, who lives in the Steuben County village of Bath in the Finger Lakes region, is battling a demon he can’t control. Since September, he’s suffered from a major tic disorder. It goes on, unpredictably, for hours a day. Even on three heavy-duty medicines, he has seizure-like episodes that leave him sitting dazed for half an hour.
The disorder keeps him at home. It makes it hard to study for his online degree in graphic design from the Art Institute of Pittsburgh – and well-nigh impossible to look for work after being laid off early last year from his job at a furniture factory. It creates inevitable fears for his health, his wife, his future.
“It’s so frustrating,” he says. “I just want an answer to what I’ve got.”
Whatever Bryan Tremblay’s got is remarkably similar to the tic-like illnesses that have afflicted 15 students at LeRoy Junior/Senior High School about 70 miles away. Many of the LeRoy students, all but one a girl, came down with the disorder about the same time Tremblay did (he didn’t hear about that until much later). Most were diagnosed with “conversion disorder,” and since so many cases were involved, medical experts have declared it a “mass psychogenic event,” in which stress or trauma is supposedly converted unconsciously into physical symptoms and spreads among affinity groups. School and state health officials say they’ve ruled out environmental or infectious causes and insisted again on Wednesday that the school the girls attend “is safe.”
No one is suggesting conversion disorder in Tremblay’s illness. No one he knows has anything like it. Extensive neurological workups have turned up nothing. He’s due for another follow-up in a couple of weeks at the University of Rochester Medical Center. Tremblay doesn’t drink or use prescription or recreational drugs, nor has he been to LeRoy.
He is no publicity seeker. His sister mentioned his situation in a comment on a story we wrote about LeRoy. She gave us his contact information when we asked, and we reached out to Tremblay.
In an e-mail, he responded: “The symptoms seemed to appear almost out of thin air. It started with uncontrollable body spasms and convulsions in my mid to upper body area. These convulsions lasted from approximately 15 minutes to a 30 minute span.
“Soon the spasms started moving to my head and neck area and the movement was similar to a strong neck-whip similar to that of whiplash, sharp and strong and completely random. I did seem to notice that the amount of stress was a factor in the strength of the tics. The problem is the stress level increases once it starts and the tics become stronger and increase as well.
“I noticed that after five months the tics have become vocal, more yelling and humming with points of time where I repeat noises over and over. I find myself spacing out for large amounts of time and daydreaming with difficulty recovering.
“I have also started hand and arm movements.”
In almost every way, Tremblay’s life circumstances could not be more different from the LeRoy cases. But one common factor was evident during a visit – water. Water everywhere. Tremblay lives in a low-lying area. His house backs up to a levee less than a football field’s length behind his house.
Tremblay’s water comes from a well sunk in the back yard. He said he’s been told his house sits on an old riverbed that ran through what is now levee, farmland, and swamps.
It’s hard not to wonder: Does water have something to do with this?
Before we met Tremblay and saw his environment, we raised this same question about the LeRoy school. Parts of playing fields – including the new girls’ softball field – are on a FEMA-designated flood hazard area. We were told that the softball field had to be dug up not long after it was built because flooding was such a problem. The school building has a history of flooding and settling.
Adding to the mystery – and the pattern -- is that two more tics cases have been identified in girls in Corinth, New York, above Albany. They reportedly began in May; the LeRoy girls apparently were affected starting in September, and Tremblay dates his onset to late August or early September – he’s not certain, because lacking health insurance he waited a couple of weeks to seek treatment.
If this were a case series – several patients appearing in a limited area, in close temporal proximity, with strikingly unusual symptoms – it would map like this:
The map is intriguing because all three areas fall under the umbrella of an unusually rainy year, followed by a winter in which the ground and water have not frozen. The big rains started in the spring – when the Corinth girls say they were affected – and deluges from late summer Hurricanes Irene and Lee followed.
Here are rainfall charts – we used Buffalo and Rochester to approximate LeRoy since it is in-between, and have added a second chart showing even higher and record rainfalls in Binghamton (for Bath), and Albany (for Corinth).
But what could rainfall have to do with a higher risk of a strange illness? We’ve suggested that excess water could move or concentrate dangerous chemicals, such as farm runoff, or cause molds to develop.
As one of us walked through the farm with him, Tremblay casually referred to the Salem witch trials after noting the field was planted in rye; some historians believe the women’s behavior was not demonic but poisoning by ergot, a mold that grows in rye and other grains. We both pondered that for a few moments as we walked, and then we started talking about ergot more seriously.
One intriguing possibility is that ergot poisoning – called ergotism – might be producing the kind of jerks, grunts, and other symptoms seen in these cases. Tremblay mentioned his “neck twitching like it’s been pulled around,” a phenomenon cited in literature on ergot poisoning:
“Convulsive ergotism might better be labeled ‘dystonic ergotism.’ It is characterized by nervous dysfunction, such as writhing tremors, and wry neck, which in the past were frequently reported as ‘convulsions’ or ‘fits,’” according to Poisons of the Past: Molds, Epidemics, and History,” by Mary Kilbourne Matossian (Yale University Press, 1989).
To be sure, ergotism is a very rare illness, but so is what’s happening in LeRoy, Bath, and Corinth. It’s fair to ask whether a very wet year and warm winter could create unusual conditions in three largely rural, agricultural areas in New York state that might affect human health.
If so, seemingly disparate facts could become clues: the playing fields in LeRoy, including the new girls’ softball field, sited on the flood hazard area; the two Corinth girls being avid players on their school softball team. The commonest grass planted on softball (and baseball) fields in the region is a half-and-half mixture of Bermuda grass – and ryegrass.
So could it be rye? That’s what’s called a hypothesis-generating question. We don’t know whether ergot is an issue, we don’t know how an exposure might occur, and we don’t know whether the wet weather and warm winter are anything more than a correlation, without any causative implications.
But taking a deeper look at the environment seems like an even better idea to us now than before our visit to Bryan Tremblay, despite the fact the experts have ruled it out. As he puts it, he just wants to find “anything I can offer that could help these girls.” If there’s any justice, that will help him, too.
Dan Olmsted is Editor and Mark Blaxill is Editor at Large of Age of Autism.com. They are co-authors of “The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic,” published in paperback in 2010 by Thomas Dunne Books. Contact: email@example.com.