By Teresa Conrick
I have been following all of the news and reports on the teens and now two adults who have developed sudden onset tics and Tourette-like symptoms in upper NY. It is an unanswered medical phenomenon still and one that is devastating. One thing that seems certain -- the issue of Conversion Disorder vs Immune Disorder needs a further analysis. A report titled, "Investigation of Neurologic Symptoms among Le Roy Jr/Sr High School Students, October 2011 – January 2012" has been made available for viewing and some interesting pieces of information seem worthy of our attention:
All cases were female. Three of the 12 cases were identified as having pre-existing medical conditions associated with tic disorders. Two of the three cases, who were tic free for a period of time, experienced an exacerbation of tic symptoms during this time period. The third case was identified as having a previous diagnosis of Tourette’s disorder and did not have a new onset of tic symptoms, but rather an acceleration of on-going tics during this time period. Onsets of tic symptoms ranged from May 2011 to December 2011 for the nine new onsets.
My good and learned friends here at Age of Autism, Mark Blaxill and Dan Olmsted, have been writing about LeRoy and some of the intriguing (AofA Tics and Toxins A History of Building Woes) and significant environmental factors that may be at play. (AofA Tics and Toxins Playing Fields on FEMA Flood Hazard) Kevin Barry, an avid Age of Autism reader and researcher, also included some historical, pertinent pieces as to what could be making some of the teens so ill. Having my own daughter with similar issues of sudden onset motor and vocal tics, seizures and a history of repeated Strep infections, parasites, and lengthy viral illnesses has made the search for the source of this mystery all the more important to me.
Since Dan, Mark and Kevin all mentioned WATER as an important variable as to what was different in the LeRoy area this past Spring, I agree and also wondered if that played into another source of illness -- STREP. PANDAS/PANS - Pediatric Acute-onset Neuropsychiatric Syndrome has been denied and dismissed quickly by many of the NY investigators and medical personnel. Doctor Rosario Trifiletti, who specializes in PANS, visited Le Roy to take blood and tissue samples from some of the affected teen girls, so he could test for PANS. The results are pending. A very thorough article from Scientific Scientific American - "Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls?" echoes that possibility:
"PANS is a new name for an old idea: that infections by bacteria, viruses or parasites can cause the sudden onset of neuropsychiatric ailments such as Tourette's and obsessive-compulsive disorder OCD. (Tic disorders like Tourette's are closely related to OCD, sharing many symptoms and often coexisting in patients. PANS is more commonly known by its former name, PANDAS—pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection—because the first known cases were in kids who had strep throat and then suddenly developed OCD. But researchers have realized in recent years that a variety of infectious agents—not just strep—can cause mental illness..... OCD expert, Michael Jenike, a professor of psychiatry at Harvard Medical School, explains what PANS is and why it might account for the mysterious illness in Le Roy......It's the sudden onset of a neuropsychiatric disorder: OCD, anorexia or psychosis, cognitive problems. Initially, PANDAS was associated with strep. It turns out that other infections like mycoplasma, certain viruses, Lyme disease—these also produce the same thing. So it's not necessarily associated with strep, and they changed the name to reflect that. Now it's any sudden-onset neuropsychiatric disease.
I've even seen it in old people after they have mono, they suddenly have OCD. I've seen a lot of it after Lyme disease now, too....It's an autoimmune issue.....Mady Hornig at Columbia University has a mouse model that shows how it works. They give strep to mice, then give them another agent that breaks down the blood–brain barrier, and that induces a neuropsychiatric syndrome: the mice have trouble running mazes, and so on. Then they purify the antibodies from those mice, inject them in another mouse that never had strep, and that mouse gets the neuropsychiatric symptoms, too. That shows it's the antibodies doing the damage.....I used to think it was very rare, too. I've work on OCD my whole career, and I couldn't figure out why no one could pin down what was going on with these kids who had had strep. Then the parents got me involved, and I learned a lot more. I now think PANS is extremely common—way, way more common than we thought. I get e-mails from parents every day whose kids have it. I don't think it is rare, is the bottom line. The problem is, some doctors don't know about it, and some don't even think it exists, so it isn't diagnosed."
That seems like a scientific and current understanding of PANS as well as giving us a sense of how Conversion Disorder seems like a generic, old, Freudian school excuse for an unusual autoimmune response. So why in LeRoy, NY is there a cluster of girls with possible PANS? Let's look at some evidence to see if it fits:
WATER: The fact that heavy rain fell from late Spring and into the Fall adds the possibility of bacteria. Remember too, this - Onsets of tic symptoms ranged from May 2011 to December 2011 - which fits that rainy time period This comment from an AoA reader also illustrates this point -"Thanks for the reporting. I live north of the area and have got to say that it was unusually rainy all of last year. So much so that the water table rose and stayed that way for at least 3-4 months last spring/ summer and our basement was flooded repeatedly each time it rained a little more than usual."
STREP: Did any of the girls show signs of Strep? Yes. (ASO) titers were ordered on six of the cases. Four were elevated above the normal range and two were normal. From Dr. Jenike: "Unless you have a really good medical history, it's easy to miss signs of many of these infections. Parents say no, the kid hasn't been sick, but maybe there was a fever one day that nobody could explain and they forgot about it. Often these infections are very subtle. If strep is in the sinuses, for instance, a throat culture might come back negative. But if you do the blood test and get the patient's antibodies, you can often figure out if there was some sort of infection without symptoms. That's what Trifiletti will be able to do."
Could Strep be a possible culprit with the rain and flooding issues? Yes, it seems there is science to show that-
"Explosive food - and waterborne infections are are well documented."
Pharyngitis Due to Non–Group A (HERE) Streptococci - Streptococci of serogroups C and G have been responsible for foodborne and waterborne outbreaks of pharyngitis and for cases that led to acute glomerulonephritis. These organisms may also cause sporadic cases of pharyngitis that mimic group A streptococcal pharyngitis" That seems significant as Group A had been the known culprit in the history of PANDAS - "Allen, Leonard, and Swedo (1995) published the earliest description of a newly recognized clinical phenomenon in which tics and Obsessive-Compulsive Disorder (OCD) seemed to be provoked by a preceding streptococcal infection."
And here was more evidence that Group C and G Streptococci could behave like Group A Streptococci:
"An increase in ASO or anti-DNase-B antibody titres in a patient with a sore throat followed by arthritis does not automatically mean that GAS [ Group-A beta hemolytic streptococcus ] is the causative microbe. Group C and G b-haemolytic streptococci also are capable of evoking reactive arthritis [11–14], and may also cause a significant rise in ASO and anti-DNase-B antibody titres [9, 14]."
"Non–group A streptococci and the ASO and ADB antibody responses. Group A, group C, and group G streptococci all produce antigenically identical streptolysin O , and all 3 can stimulate ASO response." (HERE)
Report of a WHO Expert Consultation Geneva, 29 October–1 November 2001
"Other streptococcal groups (e.g. B, C, G and F) have been isolated from human subjects and are sometimes associated with infection; and streptococci in groups C and G can produce extracellular antigens (including streptolysin-O) with similar characteristics to that produced by group A streptococci (7–9). Nevertheless, the available evidence does not link streptococci in non-group A types with the pathogenesis of RF and RHD, although further studies are warranted into the role of groups C and G in the pathogenesis of RF (1, 2, 7–9)." RF is the abbreviation of Rheumatic Fever, a connection to Sydenham's Chorea, and then to PANS [formerly called PANDAS in this study] (HERE)
Back to the water issue. Horrible flooding happened in Queensland, Australia in 2010. An article, "Mystery infection linked to floods" caught my attention -- The news comes as concern mounts for thousands of people cleaning up after the floods and exposing themselves to bacteria and viruses....People become infected through a break in the skin or inhaling the bacterium presenting initially with a fever, cough and chest pain that can develop into pneumonia....."I am worried about people getting staphylococcal infections," she said. "Staph is in the water. If people can avoid going into it, they should. "People will get cuts from debris and they will have staph and strep infections because of the bacteria in the water."...."The public health message at this point has been inadequate. If it turns out we have significant bacterial infections then this needs to be managed better," he said....Meanwhile, a warning has been issued to GPs by their peak body that up to 70 per cent of people associated with Queensland floods are expected to become ill either physically or mentally.
Could LeRoy and the surrounding flooding have exposed some people to bacteria capable of causing them to develop PANS? It's a good question but an even better one would be why just these people now? The mention by Dr. Jenike that " other infections like mycoplasma, certain viruses, Lyme disease" can cause PANS opens up more doors to culprits. It is very possible that some or all of these people were very vulnerable by individual medical past history and then to a perfect storm of factors - flooding and bacterial or viral exposure.
In an interesting parallel, the high school in Virginia, William Byrd , had a similar cluster in 2007:
School officials say they have heard from roughly 10 people at William Byrd complaining of the twitching symptoms, including one female teacher. Students and parents have said that all the students affected are also female. Young women who are living with a great deal of pent-up stress are more susceptible to psychogenic illnesses, according to Bartholomew, a sociologist in Australia who has been following the case at William Byrd via the Internet. "The symptoms aren't just 'all in their heads.' They're real, though the cause is psychological," he wrote....."If I'm wrong I'll be the first one to eat a bowl of crow," he said.....It's been a busy few months for the Roanoke County Public Schools. School officials had to deal with loose asbestos at Northside High School, confirmed staph infections around the region and repeated warnings about Methicillin-resistant Staphylococcus aureus, also known as MRSA, after a Bedford County mother said her son died of the disease last month.
Could there be any connection to these "confirmed staph infections" and what happened at William Byrd? Again though, why a cluster at another high school and again - females? Many have questioned if Gardasil, a vaccine historically given to pre-teen and young adult females, as being THE reason. In that, "Investigation of Neurologic Symptoms among Le Roy Jr/Sr High School Students," we are told -
According to the New York State Immunization Information System (NYSIIS), seven of the [EIGHT] cases received Gardisil, human
papillomavirus (HPV) vaccine. Five cases received the recommended three doses while two cases received two of three doses. Six of seven cases who received Gardisil had onset of tic symptoms greater than one year after their last dose of vaccine. One case received her third dose after her tic symptom onset (Table 1). No temporal relationship between vaccine administration and symptom onset was identified. A post-licensure safety study of HPV vaccine among 189,629 females completed by an independent safety team of experts, identified no association between vaccination with Gardisil and neurologic disorders (1).
And here is that part of the perfect storm where I can say deception and deep conflict of interest come into play. That number (1) takes you to a CDC slideshow that cheerfully tells you, the consumer, that HPV vaccines are so safe. No worries. No concerns. Now if you read the study on the internet, "Surveillance of autoimmune conditions following routine use of quadrivalent human papillomavirus vaccine," you will read this, not in the CDC version presented by the New York State Department of Health (NYSDOH), New York State Office of Mental Health (NYSOMH), Genesee County Health Department (GCHD), Le Roy Central School District (LRCSD), and its medical contractor, Work Fit Medical (WFM) concerning these teens:
This study was funded by Merck & Co. C. Chao, S. J. Jacobsen and J. M. Slezak received research funding from Merck & Co for another study related to the quadrivalent human papillomavirus vaccine. C. Chao also receives research funding from Merck & Co, Pfizer and Amgen for other unrelated studies. S. J. Jacobsen served as an unpaid consultant to Merck & Co. N. P. Klein receives research funding from Merck & Co., GlaxoSmithKline, Novartis, Wyeth (Pfizer) and Sanofi Pasteur. C. M. Velicer and K. L. Liaw are employees at Merck Research Laboratories. The sponsor had significant input into the study design and analytic plan, all pre-specified in a protocol that was approved by the FDA, and took part in the review of analyses and drafting and revising the manuscript. All data were collected and analyzed at Kaiser Permanente and Kaiser Permanente authors held final decision power about all editorial suggestions.
That seems very deceptive and not too reassuring about not only safety issues with Gardasil but the possible lengths undertaken to not reveal inconvenient truths. More inconvenient truths exposed -- this school has an extensive history of being waterlogged. From Dan Olmsted and Mark Blaxill's investigations: "The school where 12 girls developed tics attributed to "conversion disorder" has a history of water and structural problems, and an outbreak of rashes and sores occurred among students playing sports on land where the school is now sitting, according to a student who went there." "The tics broke out after an unusual pattern of heavy rain, followed by a mild winter that has kept the ground from freezing and left lots of standing water at Leroy Junior/Senior High School. That should be no surprise. Part of the school grounds -- including athletic fields -- are right on top of of a federally designated FEMA Flood Hazard Area. While a county official told us that the school itself sits on a slope just above the hazard area, the zone cuts right across the girls’ softball diamond, as well as the football/track field and another, larger baseball field.
We are also not told about any other vaccines that may have been given. Could it be that Gardasil and any other vaccinations could have set these vulnerable teens and adults into a position with a compromised immune system?
Many children who have had regression or exacerbation due to vaccines may not show signs immediately. Like regression in autism, there can be subtle signs and worsening of both medical and behavioral symptoms with both future vaccination and illness. Both of these are connected to the immune system so it is not a giant leap into the unknown.
I do believe there is enough evidence to make the Conversion Disorder eat crow. Here is one more bite for it: "Dyskinesias and associated psychiatric disorders following streptococcal infections"
All of the tic patients fulfilled a diagnosis of PANDAS.5 Although there was evidence of streptococcal infections during the majority of exacerbations, two patients had relapses after apparent viral infections, and one patient had an exacerbation after a routine vaccination. Nine of the 16 patients with motor tics (56%) fulfill a diagnosis of Tourette syndrome ICD-10.