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LeRoy, PANDAS, Autism and EL - Will the real "Mystery Illness" Please Stand Up?- Part 1

AUTISM PANDAS  teresa conrick- graphic adriana gamondesBy Teresa Conrick

I have always thought that the best research looks not only at the evidence in front of you but takes a look back into the past to see if history holds a key.  It is true with Autism, as we saw in Mark Blaxill and Dan Olmsted's chronology of MERCURY and its trail to the first cases of Autism in, The Age of Autism Mercury Medicine and a Manmade Epidemic and similar searching may also be needed for some newer, rising childhood neuropsychiatric disorders, like PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection )- soon to be PANS ( Pediatric Acute-Onset Neuropsychiatric Syndrome infection).  In LeRoy, NY, there appears to be a cluster of cases that has evidence pointing to PANDAS/PANS.

Let me elaborate more on the PANDAS to PANS piece. “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)”.  A group of researchers and clinicians, headed by NIMH investigators, collaborated back in 2010 on the issues of acute onset tics and ocd as factors in PANDAS and especially the fact that many cases of PANDAS were turning up to not be caused by only Streptococcus.  As a result, there are new criteria to match the new name for this increasing medical condition.  From that White Paper:

Diagnostic Criteria Proposed for Pediatric Acute-onset Neuropsychiatric
Syndrome (PANS). PANDAS to PANS

I. Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake

II. Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following
    seven categories (see text for full description):

1. Anxiety
2. Emotional lability and/or depression
3. Irritability, aggression and/or severely oppositional behaviors
4. Behavioral (developmental) regression
5. Deterioration in school performance
6. Sensory or motor abnormalities
7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency

III. Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others.Note: The diagnostic work-up of patients suspected of PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

So what does that mean?  Here are some possibilities:

1. Not only Strep but also Lyme bacteria, Mononucleosis (Epstein Barr Virus), and Mycoplasma bacteria ("Walking Pneumonia,") are  added to the list of infectious triggers.  Good news for many who have children who have suffered yet were often lost or dismissed due to absent Strep symptoms.

2. The very important word, "Autoimmune" is now gone from both title and description.  "Acute" replaced it which may be problematic, especially as PANS increases in numbers, severity and chronic presentation.

3. A huge change and one I think is significant moving forward - "including not only disorders  potentially associated with a preceding infection, but also acute onset neuropsychiatric disorders without an apparent environmental precipitant or immune dysfunction."  That further takes old PANDAS away from its immune epicenter, muddying the waters more for those trying to get proper medical treatments (IVIG, antibiotics, antiviral etc) and paving the way to more of a behavioral-targeting drug treatment.

4. This definition may make PANS seem to fit more into a behavioral, psychiatric diagnosis , ie -- DSM-5.  That could not only change the perception of immune-mediated disorders but also delay proper research into why so many children are not able to handle illnesses and what types of medical treatments could help.  Clearly this is an immune/autoimmune process yet there seems to be a backing away from that direction.

It seems important to keep the focus on the immune system as many of the children's issues originate from that area. Here are some studies that accentuate that point:

- "Infectious and immune factors are broadly implicated in the pathogenesis of childhood neuropsychiatric conditions, including   Sydenham’s chorea (SC), Tourette’s syndrome (TS), obsessive-compulsive disorder (OCD), attention-deficit/ hyperactivity disorder (AD/HD) and autism spectrum disorders (ASD).1–5"  .......

- "Altered humoral immunity, including higher autoantibody levels, is reported in a wide range of behavioral syndromes,including movement disorders,43,49 schizophrenia, 50,51 autism 52 and neuropsychiatric SLE"......



 Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection   (Here from SARNet)

- "In a study investigating D8/17 in PANDAS, Swedo and colleagues compared 27 children who met the diagnostic criteria with 9 patients with Sydenham's chorea and 24 healthy controls, and found a significantly higher percentage of B cells that bind D8/17 monoclonal antibody in children with both diseases than in controls (89% in Sydenham's chorea, 85% in PANDAS, 17% in controls) [65]. Another study of patients with child-onset OCD or Tourette disorder found 100% positive reactions for D8/17 in patients compared with 5% in the control group [13]. Subsequent studies investigated D8/17 positive B-cells in obsessive-compulsive spectrum disorders, as well as in other neuropsychiatric disorders. High percentages of B-cells expressing D8/17 were found in patients with autism (78%) [15], anorexia nervosa (100%–81%) [66,67], adult OCD (59%–92%) [68,69], tics (61%) [70] and trichotillomania (59%." ....... 

- ......"
GABHS [ group A beta-hemolytic streptococcus] has also been implicated in the development of Tourette syndrome [12-14] and autism in children [15]......"

-....... " Streptococci are not the only infectious agents implicated in Tourette syndrome, other pathogens putatively involved include Borrelia burgdorferi and Mycoplasma pneumoniae [51]."....  What every psychiatrist should know about PANDAS: a review. 

- "By definition, PANDAS has a relapsing remitting course with temporal association with further infections 12 Although streptococcal infections appear to be the initiators of disease, other infective triggers may be responsible for relapses 27, 28....."

- "Similar investigations in a PANDAS cohort found an increased incidence of anti‐neuronal antibodies and positive streptococcal serology in patients with tics or choreiform movements , 4 ..... We have found similar anti‐neuronal antibody findings in post‐streptococcal autoimmune dystonia, and propose that the same auto‐antigens are involved in all post‐streptococcal CNS syndromes (chorea, tics, dystonia and autoimmune encephalitis) 14. 25, 27...."

- "Anti‐neuronal antibody findings in TS [Tourette's Syndrome] have been generally supportive of the autoimmune hypothesis in TS; two studies have demonstrated the presence of anti‐basal ganglia antibodies in TS compared to control groups," .... Autoimmunity and the basal ganglia: new insights into old diseases

- "A large number of autoimmune disorders have a gastrointestinal (GI) dysfunction component that may interplay with genetic, hormonal, environmental and/or stress factors..... Sufficient evidence exists to support that a subgroup of children with autism may suffer from concomitant immune-related GI symptoms."   Autoimmune and gastrointestinal dysfunctions: does a subset of children with autism reveal a broader connection

My point, that the growing numbers of children presenting with these types of disorders - Autism, Adhd, Tourette's, - tics - OCD, and then the newer named--PANS,  are increasing.  In much of the research, we do not often hear about why this might be.  It is critical to know how such debilitating disorders or diseases develop because as much as the word "acute" is stressed, many of them become acutely chronic.

Looking at their unique pictures, each presents with odd, unusual motor and/or vocal movements, repetitive actions, and often behaviors that show a regression of function. If we go back to that important statement, “If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever, "  then it seems to make sense that what we see in these children is often times the manifestation of the immune system, or more importantly, the dysfunction of it, affecting these children in similar yet different ways. Unfortunately, some do not see that, and that is curious.  An example is what has been developing in LeRoy, NY and nearby areas where currently, a group of teens, mostly girls, and two adults have developed severe Tourette-like vocal and motor tics. Some have been told that they have a diagnosis of Conversion Disorder, a psychological diagnosis formerly known as hysteria.  There has been concern of a possible conflict of interest on that diagnosis:

"Two pharmaceutical companies that make HPV vaccine have hired Dr. Laszlo Mechtler in the past as a speaker, paying him more than $150,000 in fees in 2009 through 2011, according to a ProPublica database.

Mechtler is the neurologist who reportedly diagnosed 11 teenage girls in Le Roy who have been displaying tics and verbal outbursts with "conversion disorder."

State public health officials relied, at least in part, on Mechtler's diagnosis to rule out vaccines [Gardasil and Cervarix] for the sexually transmitted human papillomavirus as a cause."

I have no idea if that is remotely part of this debate but it is something that has been brought up as a possibility as both Gardasil and Cervarix, sold by Merck and GlaxoSmithKline, contain significant amounts of aluminum:

-"Mechanisms of aluminum adjuvant toxicity and autoimmunity in pediatric populations": Immune challenges during early development, including those vaccine-induced, can lead to permanent detrimental alterations of the brain and immune function. Experimental evidence also shows that simultaneous administration of as little as two to three immune adjuvants can overcome genetic resistance to autoimmunity. In some developed countries, by the time children are 4 to 6 years old, they will have received a total of 126 antigenic compounds along with high amounts of aluminum (Al) adjuvants through routine vaccinations. According to the US Food and Drug Administration, safety assessments for vaccines have often not included appropriate toxicity studies because vaccines have not been viewed as inherently toxic. Taken together, these observations raise plausible concerns about the overall safety of current childhood vaccination programs.  HERE

- "Aluminum-induced neurotoxicity: alterations in membrane function at the blood-brain barrier." : Aluminum affects some of the membrane-like functions of the BBB.  It increases the rate of transmembrane diffusion and selectively changes saturable transport systems without disrupting the integrity of the membranes or altering CNS hemodynamics. Such alterations in the access to the brain of nutrients, hormones, toxins, and drugs could be the basis of CNS dysfunction. Aluminum is capable of altering membrane function at the BBB; many of its effects on the CNS as well as peripheral tissues can be explained by its actions as a membrane toxin.

As I had posted above, another diagnosis for some of the teens has been "PANDAS-like"  - “We have some early results on some of the children,” Trifiletti said. “We’ve gotten the results, so far, [for] 6 of the 9 children back. I can tell you that they are testing positive – each one is testing for either Streptococcus or Mycoplasma, which are known triggers of the PANDAS syndrome....All we have done here is provided evidence for exposure to two infectious agents as potential environmental factors.  I would encourage efforts to further genetic and other environmental factors that likely are playing an additional role here." 

Yet the centuries-long hysteria shadow still has its fans.  This is not the first time a medical "mystery" presenting with unusual behaviors has happened. Parents who have had children diagnosed over the decades as "autistic" have had the double tragedy of seeing their child lost in unusual and often painful neurological behaviors but also they, the parents, were then branded as cold and indifferent by those same "men of science."  It does not appear that all of the LeRoy parents have been convinced that Conversion is accurate.  This from The Today Show; "Obviously we are all not just accepting that this is a stress thing," Jim Dupont, father of one of the affected girls, told TODAY. "It's heart wrenching, you fear your daughter's not going to have a normal life."

Another medical mystery that became epidemic occurred ninety-five years ago.  Encephalitis Lethargica [EL] was a horrifying disease that affected people around the world.  The book and later, film, Awakenings, by Dr. Oliver Sacks, was based on victims of EL. :

"Encephalitis lethargica is characterized by high fever, sore throat, headache, lethargy, double vision, delayed physical and mental response, sleep inversion and catatonia[3] In severe cases, patients may enter a coma-like state (akinetic mutism). Patients may also experience abnormal eye movements ("oculogyric crises"). [7[ parkinsonism, upper body weakness, muscular pains, tremors, neck rigidity, and behavioral changes including psychosis. Klazomania (a vocal tic) is sometimes present. [8]

Postencephalitic parkinsonism may develop after a bout of encephalitis, sometimes as long as a year after the start of the illness."

Many thought because it began a little before the Great Influenza of 1918 that it was a related illness. I bring it up as it is pertinent in that it too, was a mystery, also with unusual movements, tics, sleep issues and this:

"Encephalitis lethargica: part of a spectrum of post‐streptococcal autoimmune diseases?" HERE

"Encephalitis lethargica (EL) was first described by von Economo in 1917, shortly after the start of the 1916–1927 epidemic. The patients, mostly children of either sex, characteristically presented with headache and malaise, lethargy, insomnia, and ophthalmoplegia. Some recovered but the others either died during an acute fulminating disorder or developed, insidiously or after a variable period of time, movement and/or psychiatric disorders including Parkinsonism, oculogyric crises, chorea, myoclonus, mutism, catatonia or behavioural problems. Although linked by many observers to the influenza epidemic, the epidemic of EL began earlier and lasted longer, and flu virus has not been found in archival post‐mortem tissue... Sporadic cases are still reported, but the acute fulminating form seems to have disappeared, and there have been no further reported epidemics... The paper by Dale and colleagues in this issue of Brain describes 20 patients with a condition presenting with sleep disorder, lethargy, Parkinsonism and neuropsychiatric disorders, including mutism, anxiety, depression, obsessions and compulsions...The main emphasis in their paper is the evidence for an autoimmune, possibly post‐streptococal, aetiology.... Indeed about half of the patients had a previous infection, either of the upper respiratory tract or tonsillitis, and raised titres of anti‐streptolysin‐O antibodies were present in 65%. Streptococcal infections were also present in some of the original patients with EL, and similarities to Sydenham’s chorea were noted during the epidemic. Remarkably, an EL like illness was induced in dogs by vaccination against streptococcus...Several authors have previously detected antibodies to neuronal antigens in neurological diseases associated, at least in part, with streptococcal infections including Sydenham’s chorea and PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections."

This one is alarming as well: Mystery of the forgotten plague HERE

"Two young doctors had tracked down the probable cause of one of the most baffling epidemics of the 20th Century - a disease called Encephalitis Lethargica. Encephalitis Lethargica was a devastating illness that swept the world in the 1920's. It attacked the brain, leaving victims like living statues, speechless and motionless. During the outbreak, nearly a million died, and millions more were left frozen inside their useless bodies, in institutions. No-one knew what had caused it, or how to treat it...

For virologist Professor John Oxford, the disease was not just a disease of the past. As an expert on the condition, he was convinced that it could reappear...And in 1993, it seemed his fears were being realised. Becky Howells was 23 years old, when she suddenly became very ill. She started shaking, becoming feverish, hallucinating. Within hours she had become critically ill and was rushed to hospital. Doctors had no idea what was wrong. They knew her brain was dangerously inflamed, but had no idea what was causing it. Professor Oxford was convinced that the solution lay in the past. He tracked down brain tissue samples from the original 1920 victims and tested them, looking for traces of a virus that could have been responsible for the outbreak all those years ago...

At the time, an unusually severe strain of influenza, Spanish flu, had swept the world, and it seemed possible that both epidemics were linked.  But despite exhaustive testing with the latest molecular probes, there was no evidence of any virus - flu or anything else... And Becky was not an isolated case. Since then more and more patients have been discovered. All suffering from the same bizarre symptoms... So the two doctors started looking for evidence of bacterial infection - and particularly streptococcus bacteria which is a common cause of sore throats. Together with a colleague, Dr Andrew Church, the two doctors began analysing all their patients to see if they had anything in common.

They had discovered evidence of a rare form of streptococcus bacteria in all their patients. The bacteria that can cause a simple sore throat had mutated into a much more severe form and triggered the attacks of encaphilitis lethargica. First, many of the original victims had also presented with sore throats, and secondly, in the detail was a reference to a particular bacteria - diplococcus. Diplococcus is a form of streptococcus bacteria."

Teresa Conrick is a Contributing Editor for Age of Autism.

Comments

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Thank-you Teresa for covering the LeRoy issue.
As someone commented above, the vaccine records of the affected kids need to be examined - and not just with regard to the HPV vaccine.
Sadly, it does not appear that will happen.

Atari;
I just read a little about it, so you know how much I know. But it sure sounds like some form of Narcolepsy

Atai,

I have read some of the articles about "Nodding Disease" and it is devastating. Do you have any information that suggests vaccines are involved?

could Nodding disease in Uganda and Sudan be linked to vaccines?

" ......This makes me wonder whether this could be the result of bacterial contamination in the vaccine manufacturing process that cause the so-called hot-lots, etc..."

********

Absolutely. If you know anything about the Lymerix vaccine, then you already know that GSK has some unique experience with getting lyme bacteria into a vaccine.

Lymerix was the Lyme disease vaccine that GSK pulled off the market in 2002, citing ....poor sales. As if there was ever a vaccine "market" that wasn't completely fabricated by a vaccine company!

The much lesser told story, is that the FDA had received numerous reports of severe reactions from people who had received the Lymerix vaccine.....side effects that included Lyme Disease itself.

Someone should DEFINITELY be looking at the vaccine records for these kids

Hi GennyGC,

Yes -- thanks. Suffice to say that you will be interested in Part 2 for sure!

Very interesting info which made me wonder about narcolepsy as it has been in the news recently as a side effect in children of the swine flu vaccine Pandemrix from GSK and found this study: http://med.stanford.edu/school/Psychiatry/narcolepsy/articles/Elevated_Anti-Streptococcal_Antibodies_in_Patients_with_Recent_Narcolepsy_Onset.pdf
"Streptococcal infections are probably a significant environmental trigger for narcolepsy".

"Importantly, post-streptococcal diseases have also
been linked to brain autoimmune diseases, most notably Sydenham chorea, and more controversially encephalitis lethargica,14
obsessive-compulsive disorder, and tics.15 In this context, the
presence of streptococcal infections may initiate or catalyze an
autoimmune response against hypocretin cells in narcolepsy.
Interestingly, although narcolepsy is associated with HLA and
TCRA polymorphisms, direct proof for autoimmunity is still
lacking."

This makes me wonder whether this could be the result of bacterial contamination in the vaccine manufacturing process that cause the so-called hot-lots, etc...

Incredibly interesting report, Teresa. The abrupt onset part is troublesome. -especially if a child has had the symptoms for so many years-dating back to age 2. It seems a doctor spoke last year at A1(my memory leaves me as to his name) discussed 2 types of PANDAS-one with the quick onset and the other-occurring over a longer period of time. Anyway-this subject consumes me daily and I thank you. Waiting for part 2.
Maurine

People can be strep carriers without showing signs and infect others (or keep re-infecting our own kids). Our new PANDAS doctor is testing us all.

He also said Lyme is another cause & its really prevelant in the Northeast.

Teresa, thank you so much for keeping onto this story/issue. I have a gut feeling that it's really important. It seems so obvious that something is happening to people whose behaviour changes so suddenly. The neurologists (like Mechtler and his cohorts) should be ashamed of themselves for not getting up to speed on this.

I find it strange that I only caught strep twice in my life,and it was horrible enough but----

But my two kids kept it going all the time, not just as children but on and on and on as adults. That said let me repeat "MY KIDS REACTED TO THEIR VACCINES AND THAT STARTED IT ALL!" and if they were not sick with strep then it was some other kind of cold, virus -- pathogen!

And my husband a few years after his vaccine reaction at age 35 -- started complaining that he was aching. I asked him - didn't he ache already -- and he said it was worse!!! So now around 39 or so - he went to the same doctor that sent him down to Emory clinic to be tested by Shoffner -- tested him for strep, and it was in his blood - it had gone septic! He was around 39.

Then my daughter misses out on a whole semester of college - she slept through it, at home. The next semester she becomes sick easy/often, and I had to drive down to get her many times. I remember One Friday in particula, we had just rolled into home when she startd running a fever of 104 - so we just stopped at the emergency room on the way home --- and she tested postive for strep.

Seeing the immediate reactions of vaccines, and then within the next following short weeks, and few months afterwards my kids having constant ear infections, sinus infections, pneumona --- what is the problem here???
I want some answers -- how can a vaccine that is suppose to fix the immune system againest diptheria, tetanus, whooping cough, Hep B, measles, mumps, hib ----how (because it is) linked to the body being unable to handle anything that it has not been vaccinated againest?

So ---- mental illness just might be catching afterall????

All interesting info, A known effect of mercury, and several other toxins, is reducing immunity and altering immune function. I suspect blaming microbes for illness may be a great way to avert attention from the real underlying problem--a polluted environment and poisoned bodies. I think we are being led to fear, and are often attempting to treat, the wrong things. We need a cleaner environment and less toxic food and pharmaceuticals for us, our kids, and future generations to be able to enjoy good health.
.

That phrase acutely chronic reminds me of diseases that are caused by a virus. Also, as in Auto Immune Disease Syndrome or AIDS due to the retrovirus the immune system is left vulnerable to secondary infection such as pneumonia or candida which end up causing the damage.
PANDAS I suspect is just the symptom of a retrovirus which cannot be detected with "the latest molecular probes" as the virologist searchiGreat article

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