Tics and Toxins: Evidence Points to Environment, Infection in LeRoy Outbreak
By Dan Olmsted and Mark Blaxill
As the white-hot glare of attention begins to pull away from the outbreak of tics among students at LeRoy Junior/Senior High School in Western New York, most medical and media sources appear to have settled on “conversion disorder” as their default diagnosis.
Newsweek acknowledged the families’ belief that something physical must be wrong, but the author insisted on “a very inconvenient truth: the cluster in Le Roy is, by all reasonable judgment, a mass hallucination. Aided by media of all sorts, what the girls are suffering from is perhaps the ultimate disease of our era.”
The New York Times, without bothering to name LeRoy, published an article titled “Hysteria and the Teenage Girl”: “Female adolescence is — universally — an emotionally and psychologically intense period. It is during this time that girls become aware of the emergence of womanhood, with both the great joy and promise that come with it, and also the threat of danger.” As evidence, the writer noted that a LeRoy cheerleader – not a linebacker – was one of the first stricken.
“Well, that’s the kind of nutty story that only happens once, or so I briefly thought,” wrote Caitlin Flanagan, “until more focused Googling quickly led me to an almost identical episode, this one in 2002, in a high school in rural North Carolina. Once again, a cheerleader was first to manifest the strange symptoms, and once again other girls, some of them cheerleaders, were struck with the same condition.”
Though the writer is a woman, the supposed susceptibility of peppy, excitable female cheerleaders versus stolid, masculine football players is Freudian paternalism dressed up for a new century – a misogynist’s dream. (It was our skepticism of conversion disorder that drew us to this story, having addressed it in a chapter titled “The Age of Hysteria” in our book; we will have more to say about its shaky foundations in upcoming articles.)
Responding to community pressure, the LeRoy school district has grudgingly commissioned a new round of environmental tests while asserting “the school is safe,” a balancing act that left many in the community dissatisfied. (The school board this week approved the new tests, expected to cost as much as $75,000. Some parents and environmental groups are pushing for broader tests than are so far planned. ) Local TV stations have stopped airing videos that show the girls’ tics, concerned that might spawn more “psychogenic” cases. The neurologist in Buffalo who originally diagnosed conversion disorder has become more emphatic about the diagnosis, even as four more cases arose in the past week in and around LeRoy. He hints darkly that some of the girls have had such awful experiences that, if only we knew, we would understand – pinning responsibility on the families as well as the victims’ own psyches.
The National Institutes of Health offered to evaluate the students (about 15 total at the school, possibly including one boy) for PANDAS – an autoimmune neurological reaction to strep infection. But it is downplaying the idea in advance. The lead NIH researcher who coined the term told a local news site that simultaneous outbreaks among adolescent girls would be unprecedented and unlikely.
That appears to leave only the girls, their parents and a small corps of advocates – Erin Brokovich’s group, environmental and school safety activists, a doctor who found evidence of strep infection in most of the girls – to push for continued attention to physical causes.
Based on our own reporting and analysis, they are correct to do so. Real illness remains the likeliest explanation with the suggestion that these dramatic symptoms are provoked by stress a convenient excuse for avoiding a rigorous investigation of environmental risk factors . Here are six possible risks that need to be raised, followed by a key question that needs to be answered:
Mycotoxins on playing fields?
In any inquiry into a novel medical condition, identifying significant changes in the environment is a priority. In LeRoy, as we’ve reported, several new factors converged in May 2011, when the first girl was affected there, according to a report from the New York State health department.
That month, a statewide ban against pesticides – insecticides, herbicides, fungicides -- took effect for every school in the state. The ban coincided with the rainiest spring ever in Buffalo and the second rainiest in Rochester – LeRoy is located between them -- followed by more downpours in late summer. One of the warmest winters on record has followed.
The school district confirmed last week that it “has not applied pesticides to any of the high school athletic fields since September 2010.”
That month, a product called Turf Herbicide was “used to spray broadleaf weeds on varsity football and soccer field.” In summer 2009, Roundup Weed killer was used in mulch beds, but not in 2010. (The law banning pesticides was passed in April 2010 and may have affected spraying that summer.)
This probably explains the orange substance that cropped up on playing fields at the school last year – so thick that it coated students’ shoes and clothes, so widespread some thought it was pesticide sprayed from an airplane. Officials said it was a harmless grass fungus called rust. Ironically, these fungal outbeaks may point to a counterintuitive new development: the complete and sudden absence of pesticides on school grounds.
Based on that and a history of flooding and water problems at the school, which is partly sited on a FEMA flood hazard area and wetlands, we speculated that harmful metabolites of a fungus – otherwise known as a mycotoxin -- might also have gained a foothold. One possibility: ergot alkaloids, toxic products of fungi that can grow on rye and other grasses. We told the story of a man in the village of Bath, about 70 miles from LeRoy, who developed similar symptoms last September. He lives next to a field that was planted last summer in ryegrass and not harvested, adjacent to a swamp and a levee. He draws his water from a well in the back yard.
Since then, local news outlets have spoken to experts debunking the possibility of mycotoxins, but no specific tests have been done. (For Leroy a Fungal Theory and Expert Doesn't Buy Ergot Theory.)
In December, the school district tested several places inside the school for mold spores and found none, although they did not do “destructive” tests – cutting open walls and the like – to look for hidden sources. Many experts say that it is the only way to completely rule out mold. They also did one test of the air outside the building – location not given – as a “control” to see if inside readings were higher.
One negative test was for a fungus called a. fumigatus, which can produce ergot alkaloids. A June 2005 study in the journal Applied and Environmental Microbiology found, according to its title, “Abundant Respirable Ergot Alkaloids From the Common Airborne Fungus Aspergillus Fumigatus.”
“Ergot alkaloids are mycotoxins that interact with several monoamine receptors, negatively affecting cardiovascular, nervous, reproductive, and immune systems of exposed humans and animals,” the report said. The alkaloids develop in especially high quantities on maize (corn) and latex paint, according to the study. In a comparison chart, ergot alkaloid production was far higher in latex paint than in any other medium.
That is intriguing because one substance the LeRoy school sprays annually on its grounds is white latex paint, to create the lines that mark playing fields. In the buildings and grounds report, the district said it has used Super Stripe Athletic Paint and Field Marking Paint, two latex brands, every year including 2011.
That might offer an alternative explanation for the Cheerleader Syndrome others have noted. Simply put, cheerleaders spend their time on the sidelines. (And they wear fewer clothes than running backs.) At LeRoy, four of the first 12 girls affected were cheerleaders and two were soccer players, according to the state health department report. In the 2002 North Carolina cluster cited in the Times article, five of the 10 students were current or former cheerleaders.
In Corinth, N.Y., north of Albany, two girls who came down with similar tic disorders last year were described as avid members of the softball team, and at least one of them was also a lacrosse player. The first girl was affected last May when she collapsed and suffered a seizure on the pitcher’s mound during the first inning.
Another cheerleader connection: Desiree Jennings, a “cheerleader ambassador” for the Washington Redskins, was hit in 2009 by a severe movement disorder called dystonia that she attributed to a mercury-containing flu shot a few days earlier. Her symptoms began on September 7, 2009; the first girl affected last fall at LeRoy was the week of September 4.
LeRoy school officials and their new environmental consultant, Leader Professional Services, have said they will do further tests for airborne substances before deciding on any soil tests. “Soil sampling of the LCSD property will be conducted after the air quality assessment is completed,” according to Leader’s report. “Soil sampling for the purposes of an environmental investigation is a deliberative process with specific steps included so the data obtained is representative of conditions being sampled and is reliable. …”
Parents have been strongly critical of the lack of soil tests. “We request the LeRoy CSD direct Leader do soil sampling of the school property,” according to the letter to the district last week, “especially in the athletic field areas and around the perimeter of the school building …”
Clearly, ruling out an ergot alkaloid producing fungus or some other source of mycotoxins on playing fields would require more than the one outdoor air-quality sample taken in late December.
Toxic brine from gas wells?
The school has half a dozen gas wells on its grounds, and environmental advocates have raised concerns about the controversial process known as “fracking” that was used to develop them, as well as subsequent leaks of a liquid called brine from at least two of them.
We’ve now seen a report from the state Department of Environmental Conservation, obtained by the Sierra Club’s Roger Downs and provided by local activist Charley Tarr. Dated last July, it says:
“Located on west side of high school, behind right field fence of baseball field. Well head, separator, plastic brine tank. … Issues: Evidence of brine burns of brine discharge into ground around well head and down slope into baseball field. … Spoke with Ernie Whaley, facility supervisor, on July 14, 2011, and he will remove soil with brine and plant new grass when rains start. He agreed to watch brine levels in tanks more closely. Discussed w/mgr and no fines will be issued.”
The leak is clearly visible in this Google photo. We're told the area has since been cleaned up and replanted.
Another leak is visible near the school building. A close-up shows students gathered outside not far from the site in what may be a fire drill.
Whether the brine is toxic is unknown, of course, unless the school tests it. A report from Leader on February 7 said, “Based on the information that is available, the wells at the LCSD were properly permitted and the required maintenance is performed by experienced professionals in accordance with [environmental] regulations.”
Pesticide or other toxic residue from local farms?
Farms and orchards have carpeted Western New York for hundreds of years. The fertile land is a breadbasket for the crowded Northeast, sending produce first via the Erie Canal, then by train, and now by truck along Interstate 90. Much of that land is intensively farmed with chemicals.
The LeRoy school site was farmland before it was built in 2003 adjacent to playing fields directly to the north that have been used by students for decades. State law does not require notice to school districts about surrounding pesticide use, so exactly what pesticides might have leached or flowed onto school grounds is an open question.
We do know that over the years many farmers applied chemicals far more toxic than initially understood or acknowledged, and that they can persist indefinitely in soil and groundwater. Lead arsenate – yes, a simple combination of lead and arsenic – was sprayed on fruit and vegetable crops beginning in the 1890s, and would have been widespread on orchards. Aerial photographs from the 1950s show several small apple and cherry orchards just to the south of the current school site, and contour maps show groundwater would flow north before eventually draining into Oatka Creek, which runs through the center of LeRoy.
Lead arsenate was supplanted in the 1950s by DDT. But after Rachel Carson’s Silent Spring showed its lethal effects on wildlife, it was banned in the United States. One local resident we spoke to remembered DDT being sprayed by crop-dusters when she was young. Other pesticides in wide use included organic mercury, a fungicide for crops like cabbage and potatoes that are also grown in the area.
Many of these compounds do not readily degrade or disappear; they can congregate in low-lying areas with high water tables. One potentially problematic site on school grounds has been identified by Mary Sitton, president of CMS Environmental Research in Virginia.
“In 1985, I see an access road leading to a potential dump site,” she told us after analyzing old aerial photos in her files. “However, my aerial is small scale (1:58,000) so I can’t be positive what the potential dump contains, it might just be a stump dump,” where tree stumps from cleared land were discarded.
Ten years later, “it still shows up as a scarred area just north of the wetland and agricultural fields. By 1995 the area appears to have been covered and possibly graded. Today, the area still seems barren of trees or grass.”
David Lewis, a former EPA expert, looked at the maps at our request with a private contractor familiar with dumpsites in agricultural areas. Lewis reported:
“The contractor says the site in Mary's photo is typical of what he sees all of the time in agricultural areas. Every farmer has his own dumpsite. Twenty years ago, no one paid any attention. But now, construction companies and banks loaning the money deal with them upfront. They can easily be deal breakers as to whether proposed projects go forward.
The contractor said, unequivocally, this dumpsite should have been thoroughly investigated before the school was ever built. It's only 200 feet (less than the length of a football field) from home plate on the girls' softball field. With the dumpsite that close, one has to wonder whether some of the soil used to build up the girls' softball field came from the dumpsite.
“Maps showing floodplain areas indicate that the girls' softball field and the dump site together are subject to frequent flooding, but not the boys' baseball field. The whole area, including adjacent farms, is extremely flat. The school isn't collecting a lot of surface runoff from area farms. That suggests that the source of any environmental chemicals that may be affecting the children is in the school or its immediate surroundings where the children are being exposed.
“The contractor and I both feel that this dump site is highly significant and should be the focus of investigations including soil cores tested for chemical contaminants.”
Lewis also noted: “The first thing that hit me is the direct access this dump site had to South Street Road, which is a major highway. It's not your typical spot where farmers working the surrounding fields would just dump leftover agricultural chemicals. And it's not a site for just dumping stumps and other vegetation from clearing the surrounding land. For whatever reason, landowners either built - or allowed someone to build - a road that ran from the dump site straight to South Street Road.
“This gave potentially anyone - including Le Roy's wastewater treatment plant and local industries - easy access. It could contain anything from hazardous wastes from manufacturing plastics to sewage sludge that was too toxic for land application. The site has remained bare over the years, and nothing much has grown on it even after the access road was removed. Apparently, the dump site is still being regularly disturbed, or the soil to just too toxic for trees and other plants to grow in it.”
The potential issues involving this site suggest why solely relying on air samples to decide when and where to do soil tests could be an incomplete strategy.
Industrial chemicals in the groundwater?
An early concern raised by Brokovich and others was the 1970 derailment of train cars about three miles northeast of the school carrying a toxic manufacturing chemical, TCE, as well as cyanide, which needs no introduction as poisonous to humans.
Brokovich proposed that the chemicals might have gotten into groundwater and reached the school grounds, or that gravel from a nearby quarry had been used as fill on school grounds.
Her team tested three wells, and now says that TCE is not present in the water or a likely suspect in the outbreak, even as they continue to test for other possible toxins. “This is good news,” Brokovich lead investigator Bob Bowcock said. “It is one of the many areas we are investigating where we are able to reprioritize so we can focus our attention and resources on other environmental concerns.”
At the same time, the longterm presence of toxic chemicals at the derailment site, and the apparent lack of follow-through and communication by federal officials, points to a disturbing lack of vigilance in monitoring toxic risks.
In a lengthy piece, The New York Daily News reported, “Genesee County and the town of Le Roy have very few recent documents from the state and federal governments about a 1970 Lehigh Valley Railroad train derailment and spill of the chemical trichloroethene, a check of their files shows.
“Local officials said they aren’t sure why they don’t have the information or know if they were supposed to be kept in the loop. They also want to know the reason remediation work seems to ebb and flow at the site.”
The derailment aside, there are plenty of long-term toxic exposures in and around LeRoy. The village was once the center of a thriving industrial area, evidenced by the stately old homes along Main Street that once belonged to members of an affluent business class.
The most famous company with LeRoy roots is Jell-O, founded in 1897 by a resident who began making flavored gelatin. He soon sold it to a neighbor for $450. Kraft Foods now owns the brand, which has been gone from LeRoy since 1964.
Some products were considerably less appetizing. Patent medicines with ingredients that would now be deemed toxic, not therapeutic, were manufacted in LeRoy, as was an arsenic-based rat poison called “Rough on Rats.”
Leroy is the also the home of an insulator company that manufactures porcelain for power pole insulators. A man who worked there years ago told us: “A friend and I spent several weekends there digging in the dump of the LeRoy insulator company, where they put all the discarded imperfect insulators, many going back to the mid-1890s through the early teens.
“I would have guesses that the glazes, particularly if lead based glazes and the glass fluxes might play some role, chiefly because the dump is so large and exposed to the weathering forces of nature.
“I can also tell you that there were leaching ponds elsewhere in areas where we went to look for old insulators that were full of chemicals such that the water in these ponds did not freeze in the winter.”
Thus the soil and groundwater in LeRoy and the surrounding area may harbor any number of residual chemicals in the water table in addition to the TCE plume from the 1970 derailment.
One thing is for sure: If you don’t look, you won’t find. Ruling out an environmental factor simply because girls were mostly affected shuts down any search for toxins to which they might have had greater exposure, or any infections that might make them more susceptible.
Even though the search for TCE near the school turned up nothing, for example, Brockovich’s team did find the presence in water of MTBE in one well. The substance has been used as an additive to gasoline and might have been part of fluid used for fracking on gas wells. The state Department of Conservation said the amount detected in the sample is too low to be a concern for human health.
But given the apparent lack of attention to the cyanide and TCE derailment more than 40 years ago, it is hard to argue that new tests for toxins are a waste of time.
Infections that breach the blood-brain barrier?
The girls’ tic symptoms closely resemble the symptoms of PANDAS – shorthand for Pediatric Autoimmune Neurological Disorder Associated with strep. In the 1990s, a researcher at the National Institutes of Health, Dr. Sue Swedo, and her team identified a new subtype of pediatric obsessive-compulsive disorder. “Symptoms are triggered by cross-reactive antibodies produced in response to infections with Group A beta-hemolytic streptococci,” the NIH says – in other words, in some cases of common strep throat, something goes wrong that allows the infection to cause neurological damage manifesting as tics and psychological issues. (A video showing a young woman with the symptoms http://www.youtube.com/watch?feature=player_embedded&v=c6EyE7KWIPA.)
Recently, experts have broadened the diagnosis to any neurological condition that follows a fever and begun referring to it as PANS – Pediatric Acute-Onset Neuropsychiatric Syndrome.
After testing eight of the LeRoy girls, Dr. Rosario Trifiletti, a PANDAS expert, he reported, “Five of eight girls show evidence of carriage of Streptococcus Pyogenes and seven of eight show evidence of infection with Mycoplasma Pneumonia. All eight girls tested show evidence of infection with at least one of these pathogens. Both of these agents have been associated with a PANDAS-like illness with the sudden onset of motor and vocal tics. Thus, a PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder.”
He made the announcement on the HLN cable show Dr. Drew. But the idea drew a less than ringing endorsement from Dr. Swedo, who was quoted in the local Batavian.com questioning whether an autoimmune illness could trigger a mass outbreak in that demographic. http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364
She said she was unaware of any similar occurrence and “It would be unlikely, given that PANDAS requires both a genetic susceptibility to post-streptococcal autoimmunity and a particularly virulent strain of strep.” She said boys are more affected than girls. “If a mass outbreak of PANDAS occurred, it should follow the same rules as individual cases, in which boys outnumber girls by 3-4 cases to 1. So if you had 14 affected girls, you would expect to have at least 40 to 50 boys exhibiting symptoms at the same time.”
But Trifiletti, who was more careful to couch his observations as a working theory than many who have trumpeted the “mass hysteria” diagnosis, said other factors could be at work besides PANDAS. “Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the cluster will remain a mystery. I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply “the straw that broke the camel’s back.”
Trifiletti’s suggestion that an environmental factor could undercut a person’s immune system and render them more vulnerable to an infection is one that deserves closer attention: Among the possibilities in the LeRoy outbreak is that “the cause” is not just one thing.
A mycotoxin, to take one example, could weaken the blood-brain barrier and allow an infection like strep to create a neurological problem that otherwise would not have occurred.
That idea could help make sense of PANDAS as a possibility, even if its presentation is atypical. In our book, we proposed that a number of illnesses that have baffled medical experts may well be caused by at least two co-factors. For instance, one of the worst manifestations of syphilis was a disease called general paralysis of the insane. We proposed that it was actually an outcome from treating a syphilis infection with a type of mercury compound called mercuric chloride, administered either orally or through injection. The mercury allowed the syphilis bacteria to penetrate the blood-brain barrier and allowed syphilis to enter, where it caused neurological problems like paralysis and insanity that had not been observed before. More recently, we’ve argued that the epidemic outbreaks of poliomyelitis can only be explained by the interaction of the poliovirus with newly invented pesticides such as lead arsenate and DDT.
This idea – a microbe-toxin interaction – is a challenge to the germ theory that has ruled mainstream medicine since it was first proposed by Louis Pasteur in the 1860s. But this kind of complexity may be at the heart of much modern illness, and to rule it out by doing separate analyses of various toxins and microbes – without considering whether they could be acting together in a new and dangerous – may miss the point.
The key question: What is the real case series?
Given the media’s nanomolecular attention span and the rush to judgment by the medical community and school officials, clues that the LeRoy girls may be part of a larger, more encompassing pattern have been missed. The two girls in Corinth have received attention, but too much has been made of the fact that they may have stopped in LeRoy or nearby for a meal last summer on the way to a softball game – an unlikely vector in either direction.
National news outlets have shown a video of one of the Corinth girls’ tics in reports suggesting social media has fanned the flames. But the Corinth cases show the opposite. Whatever happened to them happened, it happened before most of the LeRoy cases, and well before any media attention. That could not be mass hysteria.
Separately, a 36-year-old woman in LeRoy, not connected to the high school, developed similar symptoms last October that were diagnosed as conversion disorder before the school cluster made news. And as we reported, the 33-year-old man from Bath had symptoms at the same time. He says none of his doctors have suggested he is suffering from conversion disorder.
So what is the real case series that ought to be investigated? It is all those stricken with tic disorders in New York state for no apparent reason in 2011, in search of a common toxin and/or infection that was strikingly prevalent at the LeRoy school, but not unique to it.
We have heard reports of other people in New York state with the same new disorder. We’re told they may be reluctant to come forward, in part because they might be accused of faking or looking for publicity. They could be scrutinized for evidence of stress or trauma, with the burden on them to prove they are not victims of their own personal history.
We would also suggest that “tics” is an inadequate description of what many of these people are enduring, which includes seizures, unconsciousness, headaches, temporary hearing loss, trouble walking, and breathing and sleep problems. The letter sent to the school district last week asking for more testing also requested a survey of all building occupants “for any new or worsening health symptoms since 8/2011, including headaches, migraines, fatigue, memory and concentration difficulties, confusion, coordination issues, shortness of breath/asthma exacerbation, GI symptoms, rashes and loss of appetite.”
Of course, all this uncertainty -- and possible liability -- disappears if the media glare fades, environmental and infectious concerns are ignored, and the mass hysteria diagnosis sticks. That, we believe, would be a historic default on our collective duty to prevent and treat real human suffering, especially in children.
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.
"Detection of Apple Juices and Cereals Which Exceed Permitted Levels of Mycotoxins"
Did any of the medical providers do a food tracking comparison on these girls? Could mycotoxins in food have contributed to the situation? Could athletes, for instance, have been drinking or eating the same types of foods and bought a bad batch of something? Did some of them hang at each others house and eat the same snack. Did mothers of girls who didn't know each other buy the same types of popular foods in the area, such as local apple juice? Could explain why a guy was showing same symptoms. Beer is also a source.
All the mycotoxins in the article are grains-based or sugary stuff. Speaks to another possible inadvertant good effect of paleo/primal/SCD/GF/getting-rid-of-fungal infection types of diets.
How does a body react to a present fungus or mycotoxin when injected with an adjuvent or thimer.? There is also now evidence that those with a more diverse gut microbiota are more resilient to certain infection. Were more people exposed to a mycotoxin in food, but only those with bad guts showed the symptoms of toxicity?
Posted by: Diggin | June 08, 2013 at 07:17 AM
Less than 6% of 1,400 chemicals that threaten human health are NOT tracked
Censored: U.S. Lags in Toxicity Data
Wednesday, May 3, 2000 Los Angeles Times, By SUNNY KAPLAN
is archived at
The Congressional Report in question at the above linked in archived newspaper article is
Testimony on Children's Health and the Environment by Richard J. Jackson, M.D., M.P.H.
Director, National Center for Environmental Health
Centers for Disease Control and Prevention
U.S. Department of Health and Human Services - posted at >
Posted by: The Toxic Reverend | February 21, 2012 at 10:16 PM
One advocate shows why there is a "lack of evidence" against chemical companies and how he gathered the evidence. If you really want to fight Monsanto, this is a must see video for the strategy that it contains in the 24 minute video.
It was used against another chemical company and should be a useful strategy and method of operation against Monsanto and other chemical companies.
The following is a copy / paste from the drop down "Show More" at the videos posting;
Uploaded by eon3 on Mar 27, 2008
Michael Lynberg authored a 'Review of 643 Documented Complaints of Adverse Reactions Following the California Dept. of Food & Agriculture's (CDFA's) Aerial Spraying of two Pesticides based on Pheromones over Densely Populated Neighborhoods in Santa Cruz and Monterey Counties in September, October and November 2007'
'Citizens complained of a variety of adverse reactions immediately and soon after the aerial spraying, including: Asthma attacks; Bronchial irritation; Lung congestion and soreness; Difficulty breathing and shortness of breath; Coughing or "wheezing;" Skin rashes (sometimes severe); Vision blurred; Eye irritation; Sore throats; Nasal congestion; Sinus bleeding; Chest pains and tightness; Heart arrhythmia and tachycardia (irregular and rapid heartbeat); Headaches (sometimes debilitating); An inability to concentrate and focus; Dizziness; Muscle aches; Body tremors; Intestinal pain and diarrhea; Nausea; Swollen glands and lymph nodes in neck and under arms; Feelings of lethargy and malaise; Menstrual cramping, an interruption to menstrual cycles, and in some cases a re-commencement of menstrual cycles after menopause....'
POB 1612, Pebble Beach, CA 94953POB 1612, Pebble Beach, CA 94953
Posted by: The Toxic Reverend | February 21, 2012 at 09:55 PM
Psychogenic illnesses (it is all in your head)used often
by doctors specially if they want to blame the patient or if they do not have the answers.Desiree Jennings had been detoxified and the heavy metals cleared from her body.As for
running or walking backwards,she was using a different area
of the brain,perhaps the damage free or lesion free area.
Doctors who did not personally assessed a client should not
be giving out diagnosis.Some of the dystonia cases disappeared from the Vaers database,pHARMA covers up the tracks. I am surpised soil test was not done yet!? They did
clean up the brine (evidence) and replanted (cover-up).
Posted by: oneVoice | February 21, 2012 at 11:25 AM
I talked to David Kirby, author of Evidence of Harm and Animal Factory, regarding the LeRoy case cluster. He said, “Most neurological impairments are due to a combination of genetic susceptibility and a vast array of environmental insults. One of those insults may come from an unusual practice called chemical stabilization of bio solids. Human waste, which is full of heavy metals and pharmaceutical products, is loaded onto giant trucks and hauled to a central processing facility near LeRoy, New York. It’s the only place in the state (and one of only twenty places in the world) where chemical stabilization of bio solids is practiced. I find that very interesting.”
Posted by: Dan E. Burns | February 20, 2012 at 01:06 PM
Nathan, I have seen the video and I don't believe it in any way 'busts' Desiree. To me she walks kind of funny even in the footage where she doesn't know she's being filmed- she kind of waddles. I also found that it didn't seem too odd for her to walk sideways between the two parked cars. When she said, "I don't think I should he driving," I actually find that consistent with someone who may be suffering neurological effects, but, understandably, wants to drive. If they saw her last in October and this was what 4 months later?, I do find it plausible that she had made progress in that time.
Steve Novella of Scienceblogs telling me that her reactions could never be due to a flu shot is kind of the same as me believing that Dent neurologist who quickly dismissed the Leroy girls' disorder as psychogenic ( and who was paid quite a bit by Merck etc. As a spokesman).
Posted by: Jen | February 19, 2012 at 09:59 PM
This story references Desiree Jennings. She was later proven to not have dystonia. Either she was faking it for publicity, or it was all in her head. She was busted by the same reporters who first broke her "story." Just watch this video: http://www.ebaumsworld.com/video/watch/82218395/
Posted by: Nathan Baker | February 19, 2012 at 07:23 PM
I’m not sure that Teresa Conrick’s discovery of a decade old, remarkably similar incident has received the attention it deserves. In a nutshell, 12 teenagers (11 girls and 1 boy) at a rural high school in North Carolina developed “episodes resembling seizures.” Ten were diagnosed with “mass hysteria.”
The introduction to the case study, presumably written from the bottom of a rabbit hole, concludes that “Prompt recognition of mass hysteria allows physicians to avoid unnecessary tests and treatment.” Read the jaw-dropping document at http://ow.ly/9a9fI
Here’s the point: How are these young adults faring a decade later. Still hysterical?
Posted by: Dan E. Burns | February 19, 2012 at 06:32 PM
Reading Patrick's blog is very thought provokinig!!!
More boys than girls is what we have always understood.
More boys than girls with autism
More boys than girls with Kawasakis, and more prone to heart disease from having Kawasakis.
Patrick makes the statement that -- Maybe the boys have already been harmed from way back and are sitting at home and not in school to be counted!!!!
Which made me think of my own family;
- My husband reacting to two vaccines at age 28 and 34. He went on to work each day with muscle pain, weakness, and stiffness. He cut back on things he did had home and I picked it up,but he succeeded very well in his career. But has grown worse -- In 1 year's time he developed aniexty and was on Xanax for years -- in 5 years time he developed myclonic jerks-- it use to be in his sleep, or just when he was falling asleep, but it took 20 years to develop into constant jerks if he was not on medication.
My daughter reacted to DPT with Kawasakis but it took 10 years to begin to show signs of depression and perhaps mild bipolar --- then it gets hard to know how she would have done for she was given additional booster tetanus and then in her mid 20s a Hep B and flu. developing into full blown bipolar and now on seizure medication ,
And my son had immediate reactions to the DPT shots -as a baby, and he did have seizures and was on medication for seizures up untill he was four years old. he had autism -not speaking - tourettes and tics, but he improved socially, verbally, intellectually but-- but--- but - his tics and his seizures became worse and worse and worse - by age 10 he had pretty bad myclonic jerks and full blown seizures became more common.
What does this mean??? Becoming more and more reactive??
I wish I had known about the Atkins diet back then would work. I wish that I had tried the Ketogenic diet all by myself and not tried to get medical assistence to that end.
I think it takes carbs to keep an immune system going.
I think back on why measles is such a scary disease -- and it was if a person with it was in a concentration camp - with few calories (carbs period)
Posted by: Benedetta | February 18, 2012 at 12:21 AM
So very true! We went from four years old to 17 years old trying to get a seizure diagnosis. Things were getting worse and worse and worse, - including falling down breaking his nose, to falling down at the top of the stairs with a seizure. All the while taking a breif EER every once in a while.
When it finally showed up on the EEG -- I cried with relief to the neurologist's amazment! Fortunally he was a kind person and said that he guessed after going through so much it was finally a relief and it was!
Posted by: Benedetta | February 17, 2012 at 08:16 PM
Linda, Patrick and anyone else affected by neurological problems that the neuros don't or won't get a handle on, I sure hope you feel better, one way or another-prayers to you all. Patrick you make some interesting points about the girl's cohorts that should be looked into. I know the right people are on the case, though!
Posted by: Jen | February 17, 2012 at 08:00 PM
For all that is known about the brain, there is still vastly more that is not known. I would much rather have a clinician tell me truthfully they don't know the answer than insist on a dismissive, judgmental diagnosis that cannot be proven. Sadly, such clinicians--especially in neurology, it seems--are few and far between.
The Le Roy story has a flavor that is all too familiar. I have a daughter with seizures that don't show up clearly on EEG and have therefore done a lot of reading about EEG as a diagnostic tool. Although seizures are supposed to be diagnosed on the basis of the patient's history, the clinician's observations and judgment, and any testing that may provide guidance, many neurologists routinely rule out seizures when they can't find definite proof on the EEG.
Posted by: JSolodar | February 17, 2012 at 07:29 PM
It makes me very sad to read all these stories and the kids suffering this tic. I have had it for many years and my doctor has treated me with medication. I did get ill from indoor mold and am now very sensitive to everyday products especially fragrance, cleaning products, some food odors, gasoline, tar, the list goes on and on.
I had to have sinus surgery when living in a home with indoor mold. When I reported it the landlord just had her sons paint for a month on and off and remove old wallpaper. The air system was bothering me so I suspect indoor mold was in the system. I had lived in the home for many years but cracks in the foundation allowed the water damage to get into the walls in the basement. The heatlh department discovered it when I called to see if something was wrong with the house. I suddenly became very weak one Spring and was treated with antibiotics and was a little better in the Winter. Then the next Spring the same thing happened very weak, migraines, chest pain then they came in and painted and the next thing I had to get sinus surgery. The tic thing had already started but became worse when we moved and sadly moved into an apartment. Only there three months and we had rain after a drought and wet carpet and discovered mold underneath and suddenly black spots on the walls. Sadly no one did anything to help so I guess the indoor mold and all the stress of not getting help made the tics get worse. The neurologist did MRI's but coultn't tell what the problem was and we tried different medications. It was like my blood was surging and I was doing this tic thing probably thousands of time within hours. At least it felt like that. The medication does help and you can't tell I do it but when it wears off I can feel it is still there. I hope the kids can get help and they don't blow this off as conversion disorder or what ever. Goodness. There are so many things we are exposed to as I have learned and educated myself during the years. I got sick about 14 years ago and have worked on it and written our leaders many times to do something about helping people with indoor mold issues and the chemicals in our products that contain many untested and unrevealed chemicals. There is legislation regarding making companies have to tell the EPA what goes into shampoos, fragrance, lotions, everything. Apparently they don't have to tell what is in sometthing like fragrance which can contain hundreds of chemicals.
The kids would be using these products so maybe they were getting weakenend by one thing and a combination of things hurt the blood brain barrier or what ever they call it. I just know it hurt and at one time I thought it was tourettes.
I hope they do bulk samples in the school just to make sure it isn't indoor mold somewhere in the school. I did bulk tests at both locations and both places have many dangerous indoor molds.
I haven't heard if the kids are very weak as that was one of my first symptoms along with severe uticaria, asthma, head and chest pain. No matter what we all should be able to live in a world that you are not exposed to so many things we have noc control over. Linda
Posted by: Linda Delp | February 17, 2012 at 06:35 PM
I am always suspicious of negative mold tests. Mold is ubiquitous and completely negative tests might indicate improper testing.
Mycotoxins are fully capable of eliciting neurological anomalies. Many are neurotoxic. Penicillium, as a matter of fact, is neurotoxic in extreme doses.
If this were my school, I'd have a reputable firm do proper mold testing and remediate as needed. This has been my field of endeavor for many years and I'm still amazed at how little is know about the role of fungal poisons in the human symptom and disease process.
Posted by: Doug | February 17, 2012 at 06:24 PM
Telling the affected girls to stay out of the media to help them get better and to keep the symptoms from "spreading" is just the latest form of censorship - dressed up as "treatment" for "conversion disorder."
Please keep the pressure on until the cause is clear and the cover-up is fully exposed.
Posted by: pass the popcorn | February 17, 2012 at 03:24 PM
I missed this part as it is just "hysterical" in its presentation of blame, guilt, denial - a hefty amount of pressure to stop attention to cause-- to avoid the true picture here - that these girls are being blamed for their illness and that the very lack of testing, real environmental testing, shows the lack of concern for their well-being and the entire school. This , "to reassure both
the affected individuals and the public" is clearly code for the desire of public health and any derelict responsible parties to avoid scrutiny and blame. It is a hundred years of paradigm shifting that is connected to these girls and they have a right to real investigations and not this "pseudoseizure" bullshit.
"These attacks caused a considerable burden on the students
and their families. Eight of the students reported
some type of adverse social or psychological consequence
to their attacks, such as ridicule from other students,
inability to drive, and strained family and interpersonal
relationships. In at least 1 family, anger generated
by differing interpretations of the daughter’s attacks contributed
to the parents’ separation and pending divorce.
Additionally, the frequent occurrence of the episodes during
school placed a strain on school personnel and disrupted
the education of the other students.
Delayed recognition of mass hysteria in these students
led several individuals to have diagnostic procedures
and receive treatment that could have been
avoided had the similarities between these individuals
been noted earlier. Fragmentation of the students’
medical care probably contributed to the delayed recognition.
Another factor may have been the reluctance
of some families to consider psychological explanations
for the episodes when suggested by their physician.
Although the underlying dynamics that initiate
and perpetuate mass hysteria are poorly understood,
its prompt recognition allows physicians to avoid
unnecessary tests and treatments and to reassure both
the affected individuals and the public."
Posted by: Teresa Conrick | February 17, 2012 at 01:24 PM
The symptoms and health concerns of the girls from the North Carolina high school, 2002 incident are rapidly dismissed:
"All 10 students were girls, and 5 were currently or formerly
cheerleaders. Otherwise they seemed fairly typical
of students in the school. One student was African
American, similar to the racial mixture of the school. Four
students were in the 9th grade, 3 were in the 10th grade,
and 3 were in the 11th grade. Thus, it is not surprising
that only 2 students shared a classroom. One girl had experienced
febrile seizures as a young child; none of the
others had a history of epileptic seizures. Two girls had
taken over-the-counter diet pills at some point prior to
the onset of the episodes, and another admitted to having
tried alcohol, but none of the other students admitted
to drug use. A few had tried smoking tobacco, and at
least 1 used tobacco regularly. Potentially stressful factors
(eg, divorced parents, parental substance abuse, history
of depression, and a recent argument with a brother)....Mass hysteria is strongly suggested in these 10 students
because of the tendency for the episodes to occur at school,
the absence of an adequate organic explanation for them,
the fact that video-EEG proved 4 of the girls to have pseudoseizures, and the near simultaneous development and
resolution of the attacks. A strong female predominance
has been noted in previous reports of mass hysteria, and
children and adolescents are affected more often than
adults.1,2....Although we did not
identify specific environmental triggers in the school, the
fact that the index subject and several other girls were
cheerleaders could have encouraged additional students
to develop similar episodes."
Wow, and this got published?
Posted by: Teresa Conrick | February 17, 2012 at 12:45 PM
>In December, the school district tested several places inside the school for mold spores and found none, although they did not do “destructive” tests – cutting open walls and the like – to look for hidden sources. Many experts say that it is the only way to completely rule out mold. They also did one test of the air outside the building – location not given – as a “control” to see if inside readings were higher.
This would be an air test, which is notoriously inaccurate in revealing problems with some of the worst molds. For instance, Stachybotrys (also known as black mold) makes a heavy spore that quickly falls to the ground and thus is almost never found on an air test. This mold quickly disintegrates into spore fragments, which look like dust and are easily blown or carried all around the structure (especially through HVAC ducts) -- causing the toxins from the spores to be spread everywhere.
Insofar as the individuals from the school are unwilling to do testing that involves looking inside walls, the ERMI test is a much better bet.
Another possibility is that the affected individuals are getting mold exposure elsewhere (such as in their homes or a workplace), and that this is making them more susceptible to the whatever toxins are present in the school and whatever pathogens they encountered there. Because people who already have biotoxin illness tend to be especially hypersensitive to any additional biotoxin exposures, your hypothesis about the ergot poisoning seems especially relevant here.
Posted by: Lisa Petrison | February 17, 2012 at 11:52 AM
Le Roy’s Scientific Minds
Since the recent outbreak of neurological symptoms in a cluster of young women in Leroy, NY, numerous medical doctors have appeared in the media to say that anyone who rejects the diagnosis of conversion disorder ought not to appear in the media, as this is making the patients even sicker.
This position is hypocritical, unscientific, and dangerous. It is founded on fallacies. For example, the failure to identify an organic cause does not constitute proof that there is none; the fact that stress exacerbates symptoms does not constitute proof that the symptoms emanate from stress; and the historical record of diagnoses of “mass hysteria” (at least some of which were in all probability mistaken) does not constitute proof that this particular diagnosis of “mass psychogenic illness” is sound. Insistence that any further inquiry into the cause of the Le Roy outbreak would be harmful to its victims, and that, what’s more, there couldn’t possibly be any valid inquiry left to be made in the first place, serves only those doing the insisting, not the victims or the community. Furthermore, diagnoses of “conversion disorder” should never be made by default, since, when they are wrong, they do harm to patients by disenfranchising them, impeding their access to medical help, and inflicting the very sort of psychological trauma they (the diagnoses) purport to identify.
Other writers have pointed out thought-provoking parallels between the Salem Witch Trials and the ongoing turmoil surrounding the Le Roy outbreak. The Encephalitis Lethargica Epidemic of the early 20th century is similarly relevant to Le Roy. Many of its victims’ first disturbing symptoms were sudden-onset abnormal movements and/or behaviors. Many were initially diagnosed with “hysteria.” Some got better, some were ultimately incapacitated and institutionalized, and some were killed. Now, nearly 100 years later, there is still no clear or complete scientific understanding of this illness. Researchers continue to wonder, investigate, hypothesize, and debate. But numerous autopsies of victims of the epidemic revealed specific types of brain damage. No one believes any longer that the people stricken by this mysterious illness suffered “hysteria” – a thing no more visible under a microscope than “possession by witchcraft.”
One theory to receive more attention of late is that Encephalitis Lethargica was not infectious, but post-infectious, i.e., an autoimmune disease. If this is true, the WWI era, during which so many people were inundated by so many germs, vaccines, poisons, injuries, and hardships, may have created the kind of “perfect [immunological] storm,” in the face of which “the pathogen is nothing, the terrain everything….”
Ironically, it is local authorities who have been fanatic in their defense of the conversion disorder diagnosis, while the young Le Roy patients themselves have applied scientific minds to their own frightening case. Their dogged search for answers is neither foolish nor “hysterical,” but intelligent and courageous. May that search lead to genuine learning, help, and healing.
Posted by: Anonymous | February 17, 2012 at 11:39 AM
My son has this condition and after 2 years of recovery he is showing mild signs of OCD along with problems with hand writing without the tics so I brought him in yesterday to talk about PANDAS. Although he fits all the criteria for diagnosis his ped. was not concerned. I think he was trying to tell me that unless symptoms are severe that specialists won't do anything. Also as I read the new diagnosis criteria that came out a couple days ago I see that if there are any co-morbid conditions along with PANDAS symptoms that the Doctor is to contribute symptoms to the co-morbid condition...one example was if the child had the co-morbid condition of tourettes. I don't get it, but my child does have other mystery conditions, one of which concerns a "leaky" blood/spinal fluid barrier. The cause according to new research for his symptoms are due to abnormally high NKKC1 protein levels. Apparently these "leakages" can cause allergies, arthritis etc... This explains why he reacted with extreme side effects from every seizure drug we tried. There are clear indications that 10%-15% have this genetic defect. Apparently vitamin D3 and vitamin B3 have been shown to reduce symptoms. It is something I have heard about but have not researched yet, but all the more reason to be concerned about PANDAS. Interestingly a big part of his condition involves reacting to milk.
The point Dr. Swedo makes confuses me..."She said boys are more affected than girls. “If a mass outbreak of PANDAS occurred, it should follow the same rules as individual cases, in which boys outnumber girls by 3-4 cases to 1. So if you had 14 affected girls, you would expect to have at least 40 to 50 boys exhibiting symptoms at the same time.”"
The age group of these effected Leroy teen girl's boy peers would occur normally when these boys were age 9 and under (it would have happened most likely in the boys between K-4th grade if not earlier). The way PANDAS symtoms are showing up in the adolescent girls shows that they are unable to attend school. My point being that you would have to look at peers of these effected teen girls going back 11+ years to determine the number of boys effected but now not able to attend school. Erin B. pointed out that currently there is a large number of 2 1/2 year old boys with tic disorder. These boys may not go on to jr. high due to their condition. My son with his condition was unable to learn through kindergarten which was 4 years when including pre-school. Until major interventions, was I able to get him healthy and able to learn. If I did not intervene I don't beleive w/ the medical treatment (drugs) he was receiving that he would be able to attend school, let alone survive (he had stroke like incidents).
Also I found it curious in the paper- From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) they discuss other labels they considered using instead of PANDAS including : "Childhood Acute-onset Neuropsychiatric Syndrome (CANS) was also proposed, but was not favored because "childhood" would exclude adolescents, while "pediatric" extends to at least age 18 years (and in some definitions, 21 years). Because adolescent cases were not uncommon in the clinicians' experience, the conference participants decided that the new syndrome should not exclude cases with post-pubertal onset, as the PANDAS criteria had done." This seems to be at odds with many Doctors stating that PANDAS only occurs in age 9 and under.
I'm disappointed and obviously very confused. I'm curious if the Leroy girls also have pertussis as I have seen the pertussis and strep. co-infection this year.
I hope those effected find answers.
Posted by: Patrick | February 17, 2012 at 11:10 AM
'LeRoy school officials and their new environmental consultant, Leader Professional Services, have said they will do further tests for airborne substances before deciding on any soil tests.'
I would feel a lot more comfortable if I knew the "work product - track record" of "Leader Professional Services" .. such as .. have they ever found an industry .. for arguments sake .. say the "coal or fracking industries" .. guilty of causing health problems in rural areas?
I hope Leader Professional Services is a truly reliable .. independent company .. and .. their scientists have no close affilations with industries throughout NYS.
Posted by: Bob Moffitt | February 17, 2012 at 07:09 AM