Tics and Toxins: Similar Case in County Near LeRoy May Point to Environment
By Dan Olmsted and Mark Blaxill
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 protected].
Good grief, can Bryan pack up and MOVE or at least go and visit a relative or friend and see if he recovers some?
What are his Eosinophil numbers on his CBC? My understanding is that with mold exposure this number will be higher than what it should be.
Have they done allergy blood work on him? We need to start a Bryan Chip In to help with his medical bills and moving costs!!
Posted by: Liora Pearlman | February 20, 2012 at 12:08 AM
There is another case, unreported as far as I know. My mother works with a woman who has a 16 year old daughter in Dutchess County NY, same torrettes like symptoms and tics. The mother is afraid to report it to the Board of Health. ALARMING, and crazy.
Posted by: SK | February 06, 2012 at 10:33 AM
As impressed as I am by this detective work, vaccines have long been suspected of creating Tic disorders.
Has anyone even bothered to look at the vaccination records for these young victims, so see if maybe they were all involved in a recent vaccination campaign?
The timing of this cluster, and the overwhelming proportion of female victims, would drive me to investigate that possibility first.
Posted by: Barry | February 05, 2012 at 03:23 PM
I found one article that is very good from university of Nebraska http://www.ianrpubs.unl.edu/live/ec1880/build/ec1880.pdf
and here is a nice video too.
http://www.youtube.com/watch?v=2D9E4ZmkpJE&noredirect=1
Posted by: Lynn Tulumello | February 04, 2012 at 06:37 PM
I found a few more things on Erogot poisoning from the Canadian government because we don't have real illness from fugus and infections here in the US, they only diagnose fake 'mental illness'
http://www.agriculture.gov.sk.ca/ergot-of-cereal-grasses
http://www1.agric.gov.ab.ca/$department/deptdocs.nsf/all/prm2402
http://www.realagriculture.com/2011/11/under-the-microscope-ergot-on-the-rise-in-harvest-samples-across-the-west/
Posted by: Lynn Tulumello | February 04, 2012 at 06:18 PM
The NY DPH and school adminstrators shutting down further inquiry will not make this go away. I guarantee there will be more cases of Tourettes-like syndrome once pesticide spraying starts up next fall. They rushed this. They didn't test the soils on the adjoining fields because they know darn well they'll find pesticide residue. Organophosphates are pesticides used to prevent mold. They are neurotoxic. It's not rocket science that peticide exposure may be involved but officials very good at obfuscating and throwing out red herring explainations like "conversion disorder" knowing some will take the bait.
Posted by: Sarah | February 04, 2012 at 03:00 PM
It does not seem to matter now that they have shut down further inquiry, but for a point of clarifiaction I would like to correct asomething I mentioned in a previous post.
DRC-1339 is not Strychnine and does not contain Strychnine. Other avicides do contain Strychnine.
Posted by: Visitor | February 04, 2012 at 01:18 PM
Theresa O;
Lord knows I can't spell but -- when it comes to an official report that is exactly right! Gardasil" is misspelled ("Gardisil") looks sloppy.
But then having no answers at the end of a report looks very unprofessional in this day and age. I think in the clutches of demons sounds more reasonable than they all were just so stressed they all developed tics together. It is reported they don't even run in the same circles or do the same things.
Sue's comment was very good. I too have found some interesting articles from drug companies denying that Erythromycin antibiotic has had claims that it can cause ergot like symptoms. And the way the medical community is handeling it --- makes her as well as me wonder with suspicion.
Posted by: Benedetta | February 04, 2012 at 11:40 AM
I think it's very possible that pesticides used in agricultural are contamninating groundwater in the LeRoy, Corinth and Bath. Lots of farmland in the area. Likely their is spraying to control mold.
The link below is to summary table on various fungicides. Look at the remarks section where it talks about groundwater contamination and water table.
Environmental Health Effects of Pesticides Fungicides and/or nematicides
http://extension.umd.edu/publications/EB237online/PesticideSafety/EffectsFungicides.cfm?startrow=11
Also, I read the NY health report and didn't see any results or description of soil or surface water testing on fields in the area. They tested the drinking water but drinking water has to comply to the Safe Drinking Water Act so testing would be expected to show nothing unusual. The NYDPH is looking in the wrong place in other words not testing in the right areas.
Posted by: Sarah | February 04, 2012 at 11:21 AM
Im just noting the new england journal of medicine article linked by Theresa is no longer available hmmm..
Marty
Posted by: Marty | February 04, 2012 at 08:31 AM
I thought of ergot poisoning the moment I read the field was planted with rye and never harvested.
Anybody touch base with doctors in northern England/ southern Scotland where a lot of rye is planted?
Posted by: kim theilmann | February 04, 2012 at 07:02 AM
Posted by: Sue | February 04, 2012 at 01:18 AM
I just finished reading the press release (http://www.whec.com/whecimages/repository/cs/files/Investigation_letter.pdf) from the school district and noticed an interesting item in the references.
The school district report cites a CDC paper about kids at a Tennessee high school who smelled an unusual odor and got sick. Because the kids' blood came up negative for a few toxins (such as carbon monoxide--interesting choice to test for, as it has no odor), the illness was labeled a mass psychogenic event. OK. However, the NEJM (which printed the original CDC paper) also ran *several* well-written letters to the editor disagreeing with the diagnosis of mental illness. I guess the folks in LeRoy didn't bother reading those. (Here they are: http://www.nejm.org/doi/full/10.1056/NEJM200006013422213)
Another thing I noticed was the involvement of several government entities (a few at the local level, a few at the state level) in the investigation... and I have to say, if I were a parent, the last thing I'd want is for the state office of mental health to be deciding whether my kid is (pardon the layman's term) crazy.
When I was in college, my roommates and I made a pact that if we were ever assaulted on campus, we would skip the campus cops and go directly to Boston PD. No way would we allow a group whose salary was paid by the university to decide how to investigate a crime against us. (Thank God it never came to that.)
I'm not blaming the parents--they wanted answers, and they probably thought the folks at NYSDOH, NYSOMH, etc., would be in a position to know information that could help their kids. It doesn't, however, seem to have worked out that way. All the "investigation" did was to unleash the denial machine.
Oh, and not to be a nitpicker, but it's really hard to take the school district's report seriously when "Gardasil" is misspelled ("Gardisil") every time it's used (four times). In the rush to "allay community concerns," did no one take 30 seconds to verify the spelling at the Merck website?
Posted by: Theresa O | February 03, 2012 at 09:46 PM
Lynette;
Have you worked with someone who snuffs his nose or snorts like he is clearing his throat?
If so have you been successful getting them to stop?
It has not started up in another form when you do?
Posted by: Benedetta | February 03, 2012 at 07:14 PM
I work with this type of thing frequently. I use neurofeedback and it takes a couple years but we do seem to stop the tics.
Hope this helps deal with it while you try and understand the why.
Lynette Louise MS, CBS, BCN-T
brainbody.net
Posted by: Lynette Louise | February 03, 2012 at 06:26 PM
Superb work but not hard to find sadly to say I know several people in a population of 1000 with tics in the Uk..on we go nothing to do with vaccines ..wink !!
Angus
Posted by: Angus Files | February 03, 2012 at 06:25 PM
No doubt it would have almost comical historical resonances if it was ergotism, with conversion disorder being the 21st century equivalent of demonic possession. But you just wonder at all the agencies that do not want to find out what it really is. Perhaps the lesson is now that denial is simply the first resort, and that is our civil culture.
Posted by: John Stone | February 03, 2012 at 06:14 PM
Benedetta,
I think what you came across about geldings metabolizing ergot differently, thereby retaining the pathogen, is extremely significant. Just like kids with autism not eliminating as much mercury as non-autistic children, as evidenced by hair analysis. Where does it go? It stays in the body and affects the brain.
I lay money on ergot as the cause.
Should be very interesting to see how it all shakes out.
Posted by: pass the popcorn | February 03, 2012 at 06:01 PM
When are officials going to acknowledge that a 36-year-old nurs-practitioner has ALSO been affected? http://www.huffingtonpost.com/2012/02/03/marge-fitzsimmons-mystery-illness-leroy_n_1252514.html Or are they going to try to pin "conversion disorder" on her as well?
Posted by: Taximom | February 03, 2012 at 05:19 PM
Pass the Popcorn;
I looked for gender - on ergot and LSD and all that. All I can find is something about giving it to horses and they found that geldings put out less in their urine.
Quote: "for ruminants, ergovaline was not detected in the urine of geldings consuming the E+ tall fescue seed diet (Schultz et al., 2006). This would indicate that the remaining 60 to 65% of the ergovaline apparently were retained or metabolized to another form, perhaps lysergic acid."
All I could find. It was a good winter for Ergot cool, wet but how did it get from out of the field into some one's body?
Produced so much spore that they breathed it? I suppose it is possible. Allergies bad this winter up in the north-east? They were bad here.
Posted by: Benedetta | February 03, 2012 at 04:54 PM
Keep up the good work on this. Folks may have noticed that this is getting a lot of attention nationally.
It might be worth trying some natural detox regimens just to see what helps. I'd recommend first Vitamin C. Here's an article on how Vitamin C has helped with many toxic insults:
http://vitamincfoundation.org/stone/ch23-25/chap23-25.htm
(The section on lead mentions cessation of tremors.) Maybe minerals in conjunction with vitamins may help:
http://www.vitamincfoundation.org/forum/viewtopic.php?f=3&t=7718 (The 3rd and 4th posts are of interest.)
Posted by: Jerry | February 03, 2012 at 04:52 PM
Thanks for this investigation and thank you, Bryan, for sharing your experience. I hope answers and relief come soone for all those affected. It sounds like ergot should be looked into.
Posted by: Jeannette Bishop | February 03, 2012 at 04:03 PM
Hi there, I just wanted to say I found your article to be very informative and well written. Much better than the mass media articles. It also brings to light the cases in three different areas. I believe there are more as well. In watching the youtube videos of the girls I saw other videos from other girls in other regions who are probably accepting their "conversion disorder" diagnosis. Im very worried about these episodes. Also please note that tourettes it 3-4 times more likely in boys than girls so this concentration in females is odd. -Marty
Posted by: Marty | February 03, 2012 at 03:56 PM
Nice analysis. The discussion of dystonic ergotism is especially interesting. There is a portion of the ME/CFS community that is stricken with dystonia as well. Environmental insult appears to be a thread that wends its way through modern day neuroimmune illnesses.
Posted by: Khaly Castle | February 03, 2012 at 01:17 PM
I wonder also if 1,2-Dibromoethane or some termite spray normally forced underground could have been carried into standing waters and inhaled or even somehow ingested. They say immune and tox screens are showing nothing, but it is possible some of these effects might persist after the toxins are gone from the body and some nerve damage has occurred and some viral effects might not show in many immune tests. I hope this girls are not taking Tylenol for their symptoms. I wonder if there has been testing for Mercapturic acid in their urine outside of possible TYlenol use metabolites, although again, it may be missing if their was a past toxic asault.
Posted by: Visitor | February 03, 2012 at 12:19 PM
Great investigative work!
Also interesting is that the witch trial victims were women. I wonder if ergot for some reason disproportionately affects women.
Posted by: pass the popcorn | February 03, 2012 at 12:07 PM
Thanks for the reporting. I live north of the area and have got to say that it was unusually rainy all of last year. So much so that the water table rose and stayed that way for at least 3-4 months last spring/ summer and our basement was flooded repeatedly each time it rained a little more than usual. Could it be something that rose up from the ground that could be affecting these people? Now I am really freaked out!!! Are they testing the soil and water in the water logged areas?
Posted by: Autism mom | February 03, 2012 at 11:57 AM
at the initial description of what was going on with the tics, Salem/ergot came to mind as i live a few miles south of where the witch trials were held; the story is well known around here.
hope all your research uncovers the truth and treatment.
Posted by: Richie | February 03, 2012 at 11:55 AM
I meant to add a latent virus as a possiblility as in H1N1 latent virus. This could be activated by toxins and MIP2 could be a factor responding to the toxin/virus combo.
Posted by: Visitor | February 03, 2012 at 11:47 AM
How about a mxture of substances and conditions coupled with a virus? Take strychnine {DRC-1339 Bird spray used some in New York}, elevated benzene {natural gas wells}, glyphoste, and possible traces of TCE, ergot, or Trichothecene from Trichoderma or other species and mix in EBV or CMV and you could get a scenario where the virus is the possible factor that is promoted in those most effected or vulnerable to these toxins and creates the effect in some.
Posted by: Visitor | February 03, 2012 at 11:29 AM
My daughter with autism (age 13, nonverbal) has always had a lot of "stereotypy" which involves humming and nonsense talk, arm and head movement. It is the stereotypy that makes her stand out in public. It's not exactly like what I see on video with the LeRoy girls- theirs is more abrupt in onset; my daughter's is a little more gradual. Her hand movement is more writhing (with the fingers), and I don't see her doing the eye movements I see in the LeRoy girls. My daughter also has grand mal seizures, which are unmistakably different from the stereotypy. I have always felt that her quality of life would be improved if her movements were lessened- it would make people be more accepting, for one thing.
I am humbled by Mr. Tremblay's generosity, as well as the girls who have gone public with their symptoms- all trying to help others.
Soon our daughter will be starting steroids in an effort to get control of her terrible inflammatory bowel disease. If her stereotypy is improved as a result, it will suggest to me that she has autoimmunity to the basal ganglia of her brain- which is the pathology behind Sydenham's chorea (autoimmune involuntary movement after strep throat).
Perhaps the LeRoy girls ought to get testing for anti-basal ganglia antibodies?
Posted by: Topple | February 03, 2012 at 10:32 AM
LeRoy-Corinth-Bath...this is a wide area geographically.
Has any one checked for records of aerial spraying in the areaand what pesticides were sprayed?
I couldn't help but notice this man walking through a field. Pesticides are often sprayed aerially on hay to control mold. Aerial sprays can drift through the air.
Some common pesticides farmers use to control pest or mold:
Propionic acid- Found to cause autsitic behavior in rats (MAsFabe et al)
Round-up (Glyphosate)- Widely used by agribusiness and highly toxic
http://www.epa.gov/oppsrrd1/REDs/factsheets/0178fact.pdf
Armezon- new agricultural pestidce but also very toxic.
http://www.agproducts.basf.us/products/armezon-herbicide.html
More Pesticide fact sheets:
http://www.pesticide.org/get-the-facts/pesticide-factsheets/pesticide-factsheets
Hazards of the World Most Common Herbicide
http://www.motherearthnews.com/Organic-Gardening/2005-10-01/Hazards-of-the-Worlds-Most-Common-Herbicide.aspx
Posted by: Sarah | February 03, 2012 at 10:27 AM
Great investigative work, Dan and Mark. I hope it leads to the answers these children, adults, and communities need. There is definitely some kind of toxin in the air, soil and/or groundwater that is causing these tics.
All the best to everyone in these affected areas.
Posted by: Not an MD | February 03, 2012 at 09:54 AM
MSNBC just reported on another victim of the mysterious disorder in Le Roy.
http://dailynightly.msnbc.msn.com/_news/2012/02/02/10302534-mystery-teen-illness-grows-in-upstate-ny-more-cases-reported?chromedomain=usnews
Notice Brian Williams uses the word “several” when speaking of the number of affected girls and omits mentioning SEIZURES that affect them. From the sound of this, it’s all conversion disorder. So is the new case of the nurse practitioner also all in her head?
Williams says "Several girls from the same high school have tics and twitches..."
MSNBC: "A psychiatric disorder known as 'conversion disorder is to blame."
The mystery illness now producing Tourette’s-like symptoms in a more than a dozen girls from upstate New York is also affecting a 36-year-old who is experiencing the same tics as the teens.
Nurse practitioner Marge Fitzsimmons, who has spent her whole life in LeRoy, N.Y., lives just a few miles from the school the teens attend.
“It started out with sudden head jerks in the middle of October,” Fitzsimmons told NBC News, the tics occasionally interfering with her ability to talk.
Posted by: Anne McElroy Dachel | February 03, 2012 at 09:41 AM
Oh Vickie they accused my son of the same thing - even with his tongue bit almost into.
The Witch trials; Was caused by a group of girls with -- tics? Is that right?
and it ended when they finally accussed a well, respected, very Christian man of the community. They begged him to confess and they would not hang him. He told them for him to confess something like that would be a lie and it was in his case his Christian duty to tell the truth.
After they hung him, they were all sick of heart and ended the witch trials.
I wonder if these girls did get better on their own?
Posted by: Benedetta | February 03, 2012 at 09:08 AM
Last night on Dr. Drew a reporter for the show in LeRoy brought up a previously unreported leak of dangerous chemicals from the fracking process with the gas tanks outside the school. The leak occurred within weeks prior to the first girls reporting they had tics. And of course, school officials are not talking.
Posted by: Maurine Meleck | February 03, 2012 at 08:12 AM
Dan and Mark, I just want to say how super-impressed I am that you take the time and effort to actually listen to people, research, conjecture, and come up with possibilities. My son has Tourette and I led the local Tourette Syndrome Association chapter for several years, so I absolutely understand tics. It pains me to hear the "official" ideas such as conversion disorder and post-9/11 stress. I had too much experience years ago when my own son was accused of having psychogenic seizures...before test results proved conclusively that the seizures were real. My son was only 12 when he said, "Mom, I've been telling the doctors for years that there was something wrong in my brain...and they didn't believe me." These doctors who come up with these conversion disorder/post-9/11 stress hypotheses have no idea the damage they cause to their own patients when the write off the patients simply because they don't understand the symptoms they are seeing.
Posted by: Vicki Hill | February 03, 2012 at 08:11 AM