LeRoy neurological disorders – PANDAS, vaccines, and whatever?

In spring 2012, I had written a few articles about a mystery neurological ailment that had struck about 20 teenagers at a high school and surrounding area in LeRoy, NY, a small town about 30 minutes from the city of Rochester. They suffered tics that mimicked Tourette syndrome, but was never diagnosed as such. Most of them have recovered, although two new cases have appeared. It’s been five years, so let’s update the news about the LeRoy neurological disorders.

I first wrote this article in 2013, yet it continues to be one of the top read articles on this blog. I’m not sure why, it may be because the outbreak was blamed on many factors that cross paths with internet conspiracies about health. Like vaccines.

Since this article about the LeRoy neurological disorders is so popular, I decided to update it (and clean up the huge number of broken links). I have also looked at the recent news about “outbreak,” and I will post links to some of the more intriguing hypotheses here.

Entering the Way-back Machine, let’s see what has happened in the past, just to catch everyone up.

 LeRoy neurological disorders rejected hypotheses

First, Erin Brockovich, yes THAT Erin Brockovich, decided to get involved. In an announcement in August, they announced that they found nothing:

There is no link specifically that I can draw to environmental exposure because there are so many environmental exposures that occurred at the high school.

As I reported in April, the EPA found nothing:

…the EPA has tested the groundwater around the high school, and it shows no contaminants including tricholoroethylene (TCE) that was spilled from a 1970′s train derailment nearby. Whatever the cause of the symptoms are, it is probably not pollutants.

The New York State Department of Health found nothing:

The findings in this report do not identify a need for the school district to restrict any school-related activities or take any special health-related precautions because of this situation. The investigation did not find infectious or environmental causes for these illnesses. NYSDOH will continue to work with National Institutes of Health (NIH) to provide interested families with an independent expert third-party evaluation. Our primary concern continues to be the well-being of the affected students and their families.

PANDAS and the LeRoy neurological disorders

Then there was the diagnosis of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) made by Dr. Rosario Trifiletti, apparently by analyzing some laboratory data over the internet. He presented his diagnosis on the Dr. Drew show, not in a peer-reviewed publication. A few journals have rapid communications which would have allowed him to rapidly present newsworthy data, so there’s no excuse to not have done this properly. Others, like Dr. Susan Swedo, who is the branch chief of pediatrics and developmental neuropsychiatry at the National Institute on Mental Health, are skeptical of Trifiletti’s diagnosis:

For one thing, PANDAS doesn’t usually occur in clusters. Indeed, Swedo says that she is “not aware” of any epidemics of PANDAS ever occurring. The last epidemic of illness following strep infections — a cluster of rheumatic fever, which is an inflammatory disorder — happened in the 1980s. (Both PANDAS and rheumatic fever are caused by overzealous immune responses to infections; immune cells mistakenly attack particular organs or tissues, in addition to the infectious agents.)

Furthermore, a recent review of research in PANDAS came to this conclusion: “Despite continued research in the field, the relationship between GAS and specific neuropsychiatric disorders (PANDAS) remains elusive. It is possible that GAS infection may be but one of the many stressors that can exacerbate tic/Tourette’s or OCD in a subset of such patients.” In other words, this “diagnosis” never had much going for it.

One last point – Dr. Trifiletti has entered the anti-vaccine world, attempting to tie PANDAS, vaccines, and autism. In the attempt to blame vaccines for autism (for the millionth time, they aren’t linked), any port in the storm is adequate, including PANDAS. There is no scientific evidence that PANDAS actually exists, there’s no scientific evidence that PANDAS is linked to autism, and there is no scientific evidence that PANDAS and vaccines are linked to autism.

Speaking of vaccines

The anti-vaccination world, including the pseudoscientific website, Age of Autism, who are always sniffing around stories in vain attempts to make illogical links to vaccines, tried to link the LeRoy neurological disorders to HPV vaccines. And added a junk medicine review of the situation.

Then another anti-vaccine website jumped into the fray with their own take on how the LeRoy neurological disorders were linked to Gardasil, the HPV cancer preventing vaccine. There must be some rule in the anti-vaccine world – blame it on Gardasil before any other vaccine.

This link was easily ruled out, mainly because we actually didn’t have information that all of these kids had the HPV vaccine (or any common vaccination). But then fellow blogger SkewedDistribution easily destroyed the illogical beliefs of the anti-vaccination cult, mainly because not all of the individuals got the vaccine, and it was up to 4 years between the vaccination and the onset of “symptoms.” I’m not sure if SkewedDistribution laughed hysterically when he wrote that article, but I did when I read it.

Chronic Lyme disease

Chronic Lyme disease (CLD) is a belief that antibiotics do not destroy the Lyme disease, and it hides out somewhere causing a lot of issues. Chronic Lyme disease does not exist – it is essentially a scam for some healthcare providers to take money from those who believe they are suffering from it. And those treatments can be seriously dangerous.

However, long term CLD symptoms seem to exist in some individuals, even after the actual Lyme disease has been successfully treated. So calling it “chronic Lyme disease” is inaccurate.

In the search of a “theory” to explain the LeRoy neurological disorders, CLD was implicated. However, Dr. William Shaffner, an infectious disease researcher and chair of Preventive Medicine at Vanderbilt University, said this about CLD and the LeRoy teens:

The short answer is you won’t find that in medical texts. Since Lyme disease has been studied with enormous care and thoroughness, the literature on Lyme first described 35 or 40 years ago now fills half a room. Its clinical manifestations are extremely well known. I think this is an unlikely cause of this single girl’s illness.

We can conclude that chronic Lyme disease does not exist (at least as an infectious disease), and it probably has nothing to do with the LeRoy neurological disorders.

So where does this leave us?

, in his blog post, “Hysteria” in LeRoy: A Skeptic’s View, has stated that “my colleague and CNN mental health expert, Dr. Charles Raison, recently reviewed this story in a thoughtful commentary. He concluded—quite reasonably—that ‘conversion disorder is a plausible explanation for the tics, verbal outbursts, and apparent seizures afflicting this group of 12 or more adolescent females.”  Dr. Pies also makes a thoughtful analysis of the diagnosis of conversion disorder, which explains “what it is”, but fails miserably at explaining “why” or what causes it.

Parsimony would lead us to conclude that the simplest diagnosis is the best, which, in this case, is conversion disorder. Whenever something like this cluster occurs, many individuals attempt to invent a complex diagnosis, sometimes to further their own causes.  As frustrating as it might be, conversion disorder may make sense, and that will help these individuals get the appropriate psychological and psychiatric help.

Dr. Pies also concluded:

Whatever the ultimate cause or causes of conversion, it seems clear that this condition does not represent “malingering” or an attempt to deceive others. Unfortunately, individuals diagnosed with conversion symptoms are often written off as “crocks” or “fakers” and denied a thorough medical evaluation. For some patients with apparent conversion symptoms, “hysteria” is indeed the last diagnosis they are likely to receive. In time, we may discover a number of distinct causes for the symptoms experienced by the LeRoy students, varying from person to person. For now, we need to keep an open mind about whatever is afflicting these young people, and treat them with respect, understanding, and patience.

In other words, there is a serious issue here, not one we should ignore because these young men and women were faking it. In the words of SkewedDistribution again, “The one thing about the LeRoy tics that remains clear is that the majority of the officials involved remain convinced that the phenomenon was caused by conversion disorder.”

Dr. Jennifer McVige, a pediatric neurologist, who has been treating most of the LeRoy students,  said “four of her 12 patients are symptom-free and another four or five are nearly at that point.” Dr. McVige and the state Department of Health agree on a diagnosis of mass psychogenic illness for the Le Roy students. The LeRoy neurological disorders are a psychological disorder, similar to conversion disorder, linked to stress in the patients’ lives. It was not PANDAS, environmental problems, vaccines, or alien visitations.

I think we can close out this story with a statement from the LeRoy School District:

With the beginning of the new school year, we are asking all media outlets and other individuals, to please respect that the Le Roy School District will no longer be commenting on student health issues within our schools. We have been warned by medical experts that the continued media attention on the Le Roy School District and greater community runs the risk of negatively impacting the students previously diagnosed with conversion disorder that have recovered and can also serve as a catalyst for new symptoms to develop.

And in the immortal words of Forrest Gump, “And that’s all I have to say about that.”

Update October 2013

I guess that’s not all I have to say about that. Two teenagers in another Upstate New York town, Corinth, have come down with the so-called Tourette-like symptoms. One parent sent their child to UCLA to be tested (wow that’s a long trip from a state that has world-class medical research facilities). They found nothing. In lieu of any physiological or obvious psychiatric issues, maybe the parents ought to read the various articles about LeRoy. Here come the conspiracies.

Update November 2017

It’s been five years since I originally looked into the LeRoy neurological disorders. And it’s been four years since I last updated this article. Let’s check if there’s any recent news that will change the conclusions from Drs. McVige and Pies.

And I found nothing new, except occasional articles that claim that science hasn’t uncovered the cause. Except that it has.

Ironically, despite the thorough debunking of the hypothesis, Erin Brokovich’s focus on the train derailment 47 years ago that dumped toxic chemicals has lead to environmental agencies, like the EPA, to start cleaning up the waste. But again, it had nothing to do with the LeRoy teens. So that’s a good thing.

Right now, we have no other evidence that would lead a reasonable scientist to an alternative diagnosis to conversion disorder. It’s not related to vaccines. It’s not related to environmental issues. It’s not related to the nonexistent chronic Lyme disease. It was not PANDAS.

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Lifetime lover of science, especially biomedical research. Spent years in academics, business development, research, and traveling the world shilling for Big Pharma. I love sports, mostly college basketball and football, hockey, and baseball. I enjoy great food and intelligent conversation. And a delicious morning coffee!

55 Replies to “LeRoy neurological disorders – PANDAS, vaccines, and whatever?”

  1. Also mass psychogenic illnesses are REAL. HOWEVER, almost by definition they come in a small group of people and do not last a long time. For example. You are in a classroom and people are feeling sick, someone smells an odor and others feel sick as well. That type stuff. I challenge any of these mass psychogenic illness folks to name ONE SINGLE DOCUMENTED CASE of any mass psychogenic illness last months, 6 months, a year? ? Lets see them put up or shut up

  2. I am sorry but conversion disorder is complete bullshit in this case. How do I know this for a fact? Well, for starters the last big case they blamed on conversion disorder was the Mystery rashes. They appeared in 2001-current times in 32 states. I know because my daughter had this rash and I saw it with my own two eyes and they claim all these kids made it up in their heads. The cases continue to this day. Schools were closed, opened, closed again, even faculty got them. But if you read the article “Hysteria, Hysteria” they pawn it off as mass psychogenic illness. Read it. You wont believe it. Second, there were cases of the tourettes like illness in other towns, one from a girl that just visited for a softball tournament. AND others from another state that were in ny for a band get together. Do not believe this crap . If you dont believe me google mystery rashes, google that article I mentioned and read all the schools that have been closed. Some recently in Florida.

  3. Hi, I just saw the documentary on the teenagers who suffered the same Tourette- liked symptoms. I think that there are poisons in the paint that they use for there pitches when drawing lines on the grass or grounds. Part of the paint mixture is a pesticide to kill bugs. That dust that gets on the skin gets absorbed and can cause various illnesses like ALS. In South Africa we have a person by the name of Joost van der Westhuizen who were one of our best rugby players-who are really seriously ill with a terminal disease. I think the same thing happened there- some people’s body’s are more succeptable to toxin overload. I am only a mother and not a medical person, but when your body gets bombarded with chemicals, toxins it attacks your immune system and can even make changes in your brains chemicals and how it works. I hope that schools will stop using these sort of paint on, school fields and also use people who know how to use and mix these paints. Have tests on this been ruled out? Has the girls been tested for this? I feel that everything should be done to make sure things like this does not happen again. My comment is made not to stir the pot but to help and find a solution. My name is Roxy van den Berg. I am Afrikaans speaking and live in South Africa.

  4. Often drug use, bath salts, laced substances,
    vaccines, etc can open a person up to evil spirits and can be exacerbated with
    things on the wall like the vid in 4:07 (pasted from the leroy youtube vid) shows a skull with bat wings and the
    phrase “avenged sevenfold” just like the Bible tells us about a demon
    leaving and bringing 7 more back with it. Pharmakeia is a Bible
    term pharmacists probably don’t want these kids knowing about. Here’s a link.
    http://www.ukapologetics.net/pharmakeia.html These are demon
    manifestations and can be dealt with but the info below is needed for fighting
    demons enough for them to be evicted from their “human” homes. Many
    parents and victims will shrug off that these are demons so the demons get to
    stay until the victim dies and sometimes tragically. Remember the pigs
    running over a cliff in the Bible. Even pigs don’t like demons in them.
    Know your enemies. Demons, want to
    steal, kill and destroy you and if they can keep you Bible dumb, then they
    usually get to stay and make one’s life miserable. All Christians have
    authority over all demons but just like bible stories, many don’t know their
    authority. Demons like to pick easy targets which is families that are
    not Bible smart.

    I’m praying for you.
    I’ve seen many miracles and won’t go into it all. Visualize the
    blood of Jesus over your life and body. Say “I cover the blood of
    Jesus over my body soul and spirit.” Jesus is my Savior (or I make
    Him my Savior to heal me in Jesus’ Name body soul and spirit)

    Say every hour of
    every day – “I cover the blood of Jesus over my body soul and

    Say every hour of
    every day – “I cover the blood of Jesus over my body soul and
    spirit.” (yes keep repeating that phrase on an index card. Your time
    has come for breakthroughs.)

    Please just do that as
    a favor from someone who does not want to go into all the reasons why until you
    start getting results. Read St. John’s Gospel and Mark chapter 9 over and
    over. Please do it. This is exactly what I would do if I had what
    you have (and more) but that’s all for now. – SW in California. here’s a
    link too http://www.pinterest.com/omega40/god-winning-warfare/

  5. Kelly M. Bray You are correct. I am sorry if my comments were misleading. I purposely called it a disorder, not a disease.The NIMH is currently classifying this as a syndrome, so that is probably the better terminology to use. Research on the syndrome is progressing quickly with many changes since 2010, and a current NIMH supported research study on IVIG with PANDAS just finished the data collection phase. All of this – the human research, animal research, and intervention research is helping professionals to fine-tune their understanding of the syndrome. There are certainly many questions about exactly what is happening in the immune system, who is affected, and why antibiotics and immune modulating treatments seem to help with these children. Clearly this is not ALL children with neuropsychiatric symptoms, but a subgroup of children with OCD and other symptoms. This is not, however, "psuedoscience". This process is how disorders are identified and diseases become classified. Like skeptical raptor, I also dismissed this disorder a few years ago after reading the abstract of one article, but have since read more studies and have been impressed with the very careful and deliberate research by a group of reputable scientists from well-regarded institutions that has led to the evolution of understanding of this illness.

  6. Jan Trigilio Tona PANDAS has not been validated as a disease entity;[4] it is not listed as a diagnosis by the International Statistical Classification of Diseases and Related Health Problems (ICD) or the Diagnostic and Statistical Manual of Mental Disorders (DSM).

  7. You neglected to note that they were treated for PANDAS or PANS (non strep infection) and they recovered quickly. Treatment for conversion disorder had not helped at all. . Each child was found to have an infection or virus known to produce antibodies, which in certain individuals can cause movement disorders and psychiatric illness (Think Sydenham's Chorea?). Report all the facts please. Also Dr. Swedo may have said PANDAS usually doesn't occur in a group, but it does not mean she does not firmly believe in PANDAS or PANS. This disorder does not affect every individual, only those with specific immune profiles, as does cancer, MS.

  8. Skeptical Raptor As I stated upfront, I do not know if the LeRoy girls had PANDAS and even Sue Swedo questioned it. Also – You are confusing your doctors. The doctor from Buffalo was the one that diagnosed conversion disorder and is a well-respected neurologist. The doctor from "the web" was a doctor from New Jersey who went to Leroy to evaluate some of the girls. He did not evaluate them on the web. Two doctors. Two different opinions.

    My comments were about YOUR use of poor evidence to claim decades of research is "junk medicine", potentially putting children at risk.

    Will this do from the JOURNAL OF CHILD AND ADOLESCENT PSYCHOPHARMACOLOGY http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf or this from the LANCET (it is one of the original ones, so it is old but a classic) http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf
    or this from the JOURNAL OF NEURIMMUNOLOGY http://pandasnetwork.org/CunninghamJNICaMKinase.pdf or this from MOLECULAR PSYCHIATRY? http://www.ncbi.nlm.nih.gov/pubmed/19668249

    Thats just the start. I could give you dozens more if you could read them (not just the abstracts and title of the journal). I've given you a historical piece that is a randomized controlled trial, a current antibody study, a recent review piece authored by researchers who are "pro" PANDAS along with a researcher who is considered to be a nay sayer, and a piece showing passive transfer in mice.

    Now please STOP the irresponsible rhetoric and recognize that your actions are public and could be putting children and families in danger. I am happy to correspond further if you would like.

  9. Jan Trigilio Tona I'm going to stop you right now. Unless you have some evidence that states very specifically that this pseudoscience you're promoting has been shown to be related to these children in LeRoy, please stop. I can cherry pick the shit out of this, and provide you with tons of real peer-reviewed articles that solidly dispute the belief (it's not evidence) that PANDAS and related junk medicine actually exist. Unless you have a real peer-reviewed journal article that shows something to do with the disorder attributed to the kids in LeRoy, further discussion is useless. I'm not at all interested in this field of medicine, not even slightly. I was only interested in the LeRoy story because so much bullshit was passed around by it, like vaccines, or 1972 train wrecks, or whatever. All that's been debunked. And real psychiatrists, not some dude on the web in Buffalo, NY, have called it conversion disorder AFTER actually seeing the patients.

    I'd be very interested in real journal articles that have something to do with LeRoy. Otherwise, time to move on.

  10. Michael Simpson jPlease see my comments (above). PANDAS is a disorder "accepted" by the National Institute of Mental Health. Researchers do not know everything about it, and it really involves more than just strep… but post infectious neuropsychiatric symptoms are well supported in many research papers.

  11. I agree that we do not know if these girls had PANDAS or conversion disorder – even Dr. Swedo agrees that their symptoms were not consistent with PANDAS. However, I am skeptical of "skeptics" who select one "opinion" paper (lowest level of evidence) that is over 4 years to state that that PANDAS is not a "real" diagnosis There are over 200 scientific papers that have been written on topic of post-infectious neuropsychiatric symptoms, the vast majority of which support evidence of this in humans, mice, and rats, and Thomas Insel, the director of NIMH has called this a "new frontier" in mental illness in 2010 and posted about the promise this may hold for mental health in 2012. Perhaps this skeptic author knows more than Dr. Insel?

  12. Lyme disease? Another one of those junk medicine beliefs totally lacking real scientific evidence. People are always searching for things to blame, when maybe your child has a mental illness that actually could be treated if you were actually an openminded person. But no. Let's blame a bacteria.

  13. @Michael Simpson, "Maybe I'll return to the story if something pops up in the future."
    Please don't, you don't add anything but nay say.

  14. As this condition seems to be only affecting females at the school (is that accurate?), did anyone think to look into the feminine hygiene products that the girls may be using?

  15. The towns people when looking for similarities of the people infected, cited the playing field of the high school where all those infected spent time. Perhaps the area was sprayed with a pesticide or herbicide mixed too strongly by the exterminator? These chemicals are supposed to break down rapidly after application, so would be difficult to detect but are known neurotoxins if exposed. I wonder if the adult who wasn't a student used the same pest control company?

    1. The problem with your type of analysis is that you're ignoring the hundreds of individuals who went to that same field and showed nothing. Maybe you could make the same sort of correlation with visits to the local burger joint. Or gas station. Or movie theatre. In other words, it's a form of confirmation bias to just say that X group of individuals got these neurological symptoms without counting all those who don't. Even if there is a correlation, and there is insufficient data to even guess that there might be, you would be miles away from showing causation.

  16. With just a handful of people with these mystery symptoms, you could probably find 100 common factors, none of which can be shown to be causal. And what about the hundreds of kids who used the soccer field and are quite normal? How about that? Oh, yeah, you haven't a clue as to how epidemiology is studied. Once again, bring peer-reviewed articles published in high impact factor journals or STFU.

  17. PARENTS! Has your child had a urine test to measure the levels of metal toxins in their body's? Vaccines include these metals as well the cause nurological damage. Their ARE FDA websites with thousands of reports to back this up. The very ones who brainwash us to believe they are safe;) good luck to all of you.

  18. Do me a favor look up "conversion disorder" and "mass hysteria" They are usually short lived things, like a bunch of people In a room smell gas and all feel sick etc. It doesn't last 6 months, involve people that just visited the town but live 100 miles away etc. Just look it up. Second, from 2001-the current time there were outbreaks of rashes in females in schools. Hundreds of schools… called "mystery rashes" these were also made to be "mass hysteria" absolutely not true. School nurses who know their kids resigned from that.

    1. If it was just me dude, sure, you'd be possibly right. But guess what? It's real psychiatrists with real degrees who have studied for a real amount of time. I'm going to defer to them rather than to you. But if you can prove to me that you have a medical degree, significant research in this area, published papers, and are willing to debate the real doctors on science alone, not rhetorical flourishes, I'd find that fascinating.

  19. I agree with most of the parents that its either an infection…. enviromental issue..or my input from an immunization..Failing any of these..guinea pigs comes to mind!

  20. Hearing the parents and the affected children, I have empathy. One of my children was supposedly treated by Mechtler, McVige and one other Neuro Doc at Dent and all were quick to pin an increasing headache problem and ill health on "psychological" issues after the MRI showed nothing. After we left Dent, we found it was Lyme and co-infections and we are on the path to better health and less pain with antibiotics. Counseling was not the cure they advocated, although needed after they "blamed" the child for being ill from psychosomatic causes. If I were those parents and children, I'd look elsewhere for help.

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