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.
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.
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.”
“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 protected].