Archive for the ‘Autism’ Category

MCAS & Lyme/MSIDS – 2018 ILADS Convention

Please go to link above to read The Better Health Guy’s summary on MCAS presentations at the Chicago ILADS convention.  Scott has requested people go to the link as there may be future corrections to the information.

He summarizes Dr. Afrin and Dr. Mozayeni’s presentions.

Afrin:  “Mast Cell Activation Disease: Foundation and Application in Tick Borne Disease Management”

Mozayeni:  “Mast Cells: Considerations in the Lyme or Bartonella Patient”

For those of you suffering from MCAS, I highly recommend Dr. Afrin’s book, “Never Bet Against Occam:  Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity”

For more on MCAS:  Dr. Afrin recently related the story of a patient,

“who in the first year of his life had been perfectly normal and then, within hours of his first DTP vaccine at age one, developed into just a terrible multi-system inflammatory mess, including essentially acute onset autism.”

When he was 20 years old, biopsies tested positive for mast cells. He was subsequently treated for MCAS with remarkable improvement.73

Most babies in the U.S. are being given 25 doses of nine different vaccines (or more) by their first birthday and can receive eight or more vaccines simultaneously.74 As mentioned previously, there are ingredients in vaccines that provoke inflammatory responses in the body that involve mast cell activation.75


Danish Study Shows Association Between Treated Infections and Risk of Mental Disorders in Children

December 5, 2018

A Nationwide Study in Denmark of the Association Between Treated Infections and the Subsequent Risk of Treated Mental Disorders in Children and Adolescents

JAMA Psychiatry. Published online December 5, 2018. doi:10.1001/jamapsychiatry.2018.3428


Importance  Infections have been associated with increased risks for mental disorders, such as schizophrenia and depression. However, the association between all infections requiring treatment and the wide range of mental disorders is unknown to date.

Objective  To investigate the association between all treated infections since birth and the subsequent risk of development of any treated mental disorder during childhood and adolescence.

Design, Setting, and Participants  Population-based cohort study using Danish nationwide registers. Participants were all individuals born in Denmark between January 1, 1995, and June 30, 2012 (N = 1 098 930). Dates of analysis were November 2017 to February 2018.

Exposures  All treated infections were identified in a time-varying manner from birth until June 30, 2013, including severe infections requiring hospitalizations and less severe infection treated with anti-infective agents in the primary care sector.

Main Outcomes and Measures  This study identified all mental disorders diagnosed in a hospital setting and any redeemed prescription for psychotropic medication. Cox proportional hazards regression was performed reporting hazard rate ratios (HRRs), including 95% CIs, adjusted for age, sex, somatic comorbidity, parental education, and parental mental disorders.

Results  A total of 1 098 930 individuals (51.3% male) were followed up for 9 620 807.7 person-years until a mean (SD) age of 9.76 (4.91) years. Infections requiring hospitalizations were associated with subsequent increased risk of having a diagnosis of any mental disorder (n = 42 462) by an HRR of 1.84 (95% CI, 1.69-1.99) and with increased risk of redeeming a prescription for psychotropic medication (n = 56 847) by an HRR of 1.42 (95% CI, 1.37-1.46). Infection treated with anti-infective agents was associated with increased risk of having a diagnosis of any mental disorder (HRR, 1.40; 95% CI, 1.29-1.51) and with increased risk of redeeming a prescription for psychotropic medication (HRR, 1.22; 95% CI, 1.18-1.26). Antibiotic use was associated with particularly increased risk estimates. The risk of mental disorders after infections increased in a dose-response association and with the temporal proximity of the last infection. The following were associated with the highest risks after infections:

  • schizophrenia spectrum disorders
  • obsessive-compulsive disorder
  • personality and behavior disorders
  • mental retardation
  • autistic spectrum disorder
  • attention-deficit/hyperactivity disorder
  • oppositional defiant disorder
  • conduct disorder
  • tic disorders

Conclusions and Relevance  Although the results cannot prove causality, these findings provide evidence for the involvement of infections and the immune system in the etiology of a wide range of mental disorders in children and adolescents.


For more:

Naturally Recovering Autism, Lyme Disease, & Coinfections

 58 Min

November, 2018

Naturally Recovering Autism (18) Lyme Disease and its Co-infections

With Karen Thomas and Dr. Jodie A. Dashore:

Want to hear Thomas’ weekly radio show?  Go here and sign up:


Gone Baby Gone – Christopher Gillberg on PANDAS/PANS


Gone baby gone

post by Christopher Gillberg 2nd October 2018

It has been 25 years since Susan Swedo described the condition now referred to as PANDAS* (which, more recently, has come to be included as a subgroup of the somewhat larger group PANS**). Swedo had herself previously examined children who after bouts of rheumatic fever (brought on by streptococcus infection) had developed Sydenham’s chorea, a condition characterised by abnormal motor movements of the face, hands and feet, and in many cases speech difficulties, slowed cognitive processing, obsessive-compulsive thoughts, concentration difficulties, hyperactivity and other psychiatric symptoms as well. Onset of Sydenham’s chorea is usually quite acute, but typically only occurs many months after a streptococcus infection has concluded.

PANDAS/PANS is similar to Sydenham’s chorea in all relevant aspects where mental symptoms are concerned, but they manifest more dramatically; motor control issues, however, are much less pronounced or completely absent. Onset is often extremely acute – from one day to the next, or at the very least from one week to the next. A child who has previously only shown minimal or moderate signs of autism, ADHD or other ESSENCE problems (problems mild enough to generally not warrant any diagnosis) are suddenly stricken with severe separation anxiety, obsessive-compulsive thoughts and actions, tics, concentration difficulties, emotional withdrawal, tantrums, crying spells or even severe psychosis-like symptoms. Quite often they also start wetting themselves and acting as though their development has regressed by several years. Some children with this dramatic symptomatology have recently gone through a streptococcus infection (in which case it might be reasonable to consider PANDAS), whereas in other cases there is no proven link to infection whatsoever (whether streptococcus or otherwise). There are some cases where, even without any clear link to streptococcus infection, penicillin treatment still appears to reduce symptoms. However, the reason for this is unknown.

The CNC/GNC is conducting a research study on PANS in children and adolescents and the first results are currently being published.

There are a number of things that I would like to strongly emphasise now that we have completed this study on PANS, the first Swedish study of its kind aimed only at children, adolescents and their families:

1. PANS exists and is not “a hoax” or “fabricated”.
2. PANS has nothing to do with Münchhausen syndrome, which is to say that this is not something that sick or weird parents have come up with.
3. The child has usually had some minor problems before the frightening deterioration occurs.
4. Immune diseases among close family members are not uncommon.
5. We know almost nothing about the causes behind it.
6. We do not know how common it is.
7. We do not know how closely related it is to regressive autism, Sydenham’s chorea or Landau-Kleffner syndrome.

All of this means that continued research on PANS should be a top priority, especially at institutions equipped with both knowledge and an interest in expanding that knowledge base, such as the CNC/GNC in Gothenburg and the OCD team/Astrid Lindgren Children’s Hospital in Stockholm.

Anyone who feels that their child has suddenly been “spirited away” without any explanation must have some avenue towards help and understanding. Most importantly, we need to figure out what is best for all the children who one day start acting in an unrecognisable manner, almost as if their old selves were “gone”. Almost nothing can be worse in this situation than to meet so-called experts who do nothing but mistrust and question one’s account of the symptoms and the circumstances surrounding their onset.

Families living with PANS know how terrible it can be to suddenly feel as though they have “lost a healthy child”. By allowing these families to meet doctors and psychologists who are knowledgeable in the field, we can at least give them a chance to feel like they “got their child back”.

*PANDAS=Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection
**PANS=Pediatric Acute-onset Neuropsychiatric Syndrome

Christopher Gillberg will be one of the speakers at the SANE Sweden 2019 PANS Conference. For more information, please visit the following link!







Neuropsych Disorders in Kids: An Interview with Co-Founder of The Stanford PANS Clinic – Dr. Kiki Chang


​Dr. Kiki Chang, is a child psychiatrist with over 22 years of experience in working with younger children, adolescents, adults and families. Formerly, Dr. Chang was Professor of Psychiatry and Behavioral Sciences at Stanford University School of Medicine and co-founder of the Stanford PANS Clinic. 
His specialty is working with youth and young adults who have or are at risk for serious mood disorders, such as depression or bipolar disorder as well as PANS/PANDAS and related neuropsychiatric disorders. Dr. Chang will be presenting a webinar August 27, 2019 for Continuing Medical Education Credit.

Thank you to Dr. Chang for allowing Foundation For Children With Neuroimmune Disorders president and founder, Anna Conkey to interview him. 

How did you first learn of PANS/PANDAS and what motivated you to begin treating children with PANS/PANDAS?

I first became interested when I realized that some patients who were referred to me for consultation with presumed bipolar disorder had an unusual onset and/or course.  These patients were also treatment resistant to standard treatments for bipolar disorder.  I discovered that many of them either met PANS criteria or had a periodic mood disorder that included elements of catatonia, or unusual mental status changes.  It made sense that underlying immunologic factors were at least partially responsible.  These patients responded to immunomodulatory treatments rather than typical psychotropics.

I also started collaborating with a pediatric rheumatologist, Dr Jennifer Frankovich, who was interested in the same patients from the other end – many of her patients with rheumatologic disorders also had psychiatric symptoms including OCD.  When we realized our shared interests and that these patients fell under the PANS rubric, we decided to join forces with Margo Thienemann and start the PANS Clinic at Stanford.

Do you ever treat children who did not have an abrupt or acute onset, and if so, do they respond similarly to children who did have an abrupt onset?

Yes I do, and not always.  Abrupt is an arbitrary but necessary concept – is it 48 hours? 72 hours?  In our 2013 Expert Consensus Diagnostic meeting we agreed on 72 hours but many kids with sub-acute onset, say one week, will still likely have the same underlying issues – it’s just that if you keep stretching out that onset time, then it becomes a gray area and muddies the research waters.  The longer and more gradual the onset, the less likely it will fit clear PANS criteria and also have the same treatment response.

How do you determine which patients with PANS would benefits from psychiatric medications and when to introduce them? 

I think our guidelines present this issue fairly well (first author Dr Margo Thienemann, JCAP 2017).  If needed, psychiatric support is always indicated – to help alleviate severe anxiety, agitation, sleeplessness, etc.  If patients are functioning OK without them, then I prefer to treat medically as long as possible before using psychotropics.  At some point, whether due to only partial treatment response medically, or other factors, psychotropics make a lot of sense.

Is there a particular class of psychotropic medication that tends to be more effective in children with PANS?

I have a particular fondness for lithium, in that for youth with severe mood disruption, including a bipolar like picture, even in a PANS context, it can be very useful.  Yes, lithium has potential side effects, but if it works, it works great.  I could go on and on about the benefits of lithium and how it is missing in our soil, water, and diets, but you probably have a word limit.

Are there any anomalies you see when treating children with PANS with psychotropic medications? 

Not sure what you mean – do you mean do SSRI’s sometimes worsen their course?  Sure, but not always.  Also antipsychotics sometimes cause EPS symptoms more so than would be expected.  Probably due to the dopamine dysregulation going on in the basal ganglia being compounded by a dopamine receptor antagonist.

Many medical providers have interpreted the JCAP treatment guidelines as step one, “Psychiatric and Behavioral Interventions,” step two, “Use of Immunomodulatory Therapies,” and step three, “Treatment and Prevention of Infections.” As one of the authors, was the intent to suggest psychiatric and behavioral interventions prior to other interventions or has this been misinterpreted? 

Yes, that would be a misinterpretation of the treatment guideline!  It’s really based on the patient’s presenting issues.  All three approaches should be considered initially.  The order depends on what’s going on with the individual patient.  If there is clear infection, then of course treat it first.  If psychiatric symptoms are severe and need urgent stabilization, then do that.  I had no idea people were interpreting the guidelines that way, I think the introduction paper to the guidelines explains the overall approach well.

Have you treated any patients with longstanding diagnoses of bipolar, schizophrenia, depression, or any mood disorders whose symptoms resolved with immunomodulatory therapies? 

Yes, on occasion.  I saw the recent report from Japan about the patient with schizophrenia whose symptoms resolved with bone marrow transplantation after a subsequently diagnosed cancer.  Absolutely make sense in SOME cases.  Great example – clozapine has a long history of working where other antispychotics have failed – for schizophrenia or bipolar disorder.  Why?  The receptor profile is similar to other atypical antipsychotics – so what sets it apart?  Well, the one main side effect people have to check for is agranulocytosis, or basically suppressing the body’s production of white blood cells.  Hmm…so a potential “side effect” is suppressing the immune system? Seems like not a coincidence to me – it probably affects the immune system in some way even when not having full suppression of neutrophil production…and that is in my opinion probably why it works when other medications don’t…that perhaps those patients have a more immune-mediated illness.

What is your approach to managing children with autism who develop neuropsychiatric symptoms? How does this differ from your approach to those without autism? 

Tough question.  Certainly just because you are diagnosed with an autism spectrum disorder doesn’t mean you CAN’T develop a PANS condition. Some might argue that these kids might be actually MORE susceptible to such a condition, given the propensity of kids with ASD to have OC symptoms and/or tics.  My approach does not differ really for treatment, but for diagnosis there must be a clear acute onset meeting PANS criteria in order to say, yes this is PANS and let’s treat accordingly.

If you could snap your fingers and have any research on PANS completed tomorrow, what would you most like to see studied?

Egads, great question, there are so many studies I would like to see done.  I’d have to say probably first to have placebo controlled steroid trials in youth with PANS.  Clearly clinically steroids can be effective, but it would help tremendously to have this proven in a RDBCT.  Oh and having a cleaner and longer IVIG trial completed – and if positive then getting an indication so that insurance companies will all have to cover it for these kids.

_____________________  According to Dr. Brown, 80% of his PANS patients have Lyme/MSIDS.





Autism Spectrum Disorder (ASD) The Question Every Parent Should Ask….Why is This Not Medical?

Autism Spectrum Disorder (ASD) The Question Every Parent should ask.… Why is This Not Medical?

Michael Goldberg, MD

There are different kinds of childhood disorders, yet none scientifically or medically can remotely affect the CDC reported 1:36 children and be thought of as genetic or developmental in origin, unless, medical science is ignored and that child is NOW labeled, ASD Autistic! However, given the horrific and increasing numbers of ASD affected children, there must be an underlying unidentified medical disease presenting with autistic like symptoms and behaviors i.e. an ASD “PHENOTYPE”!  

It is scientifically impossible to have an epidemic without a disease origin. Mistakenly labeling and then treating children as “psychiatric Autistic” is the failure of our medical system to recognize these children are really part of an enlarging, unrecognized medical pandemic affecting children and young adults. ASD (1:36) today is worse than the Polio epidemic (1:1500 – 1:2000) of the 1950’s.

As early as the 1960s, certainly in the 1970s, pediatricians were being taught at UCLA and other excellent medical schools that Psychiatric, DSM autism affected 1 – 2 in 10,000 children. Further, those 1-2 children, in order to be labeled Autistic must never be affectionate/ never normal! To have that number mysteriously begin to increase in the 1990s to the astounding level of 1 in 36 otherwise affectionate children begs the questions; “Is this epidemic? And if so “Why is this condition not considered and treated as medical?”  

Instead of being excited about the arrival of new baby, watching a child grow and prosper, sadly many mother’s today (expressed constantly when meeting new parents) live with perhaps worse fears than parents and families of the 40s and 50s. At that time the polio epidemic was a real threat, affecting 1:1500 – 1:2000 children, and the world mobilized to find a cure. Today ASD affects 1:36 and climbing! Where is the medical community? You cannot have an epidemic of psychiatric or developmental conditions!

I am proposing an answer to the question, nobody in public health, academic research or the pediatric medical community dare to acknowledge or ask: Is ASD in children and young adults a medical condition? Are they medically ill and thus treatable? 

 My answer: YES and the medically treatable symptoms and manifestations are directly related to Herpes viruses (potentially others) and the immune system! 

Medical School of the 1970s was eventful.  Professors opined we were entering a “golden age” of medicine, because “common” pathogens were being identified and eradicated. As new physicians we recognized we live in a sea of viruses. We were protected by our immune system and its adaption over thousands of years.

Nobel level professors taught there were differences between “normal” viral titers (markers) and “elevated” viral titers, indicating the presence of an active virus. Then in the early – mid 1980s very powerful medical leaders (CDC, NIH) unexplainably decided elevated Herpes viral titers in children and adults were meaningless! Lab evaluations of “normal” vs. elevated, are still carried over today, but “ignored” when elevated. As a practicing pediatrician, to suddenly be required to ignore the role of the Herpes virus was and still is beyond comprehension.  

The Medical Literature still support the significance of a fourfold change in viral titers. However, if a pediatrician does not consider or is precluded from testing for viral titers, how can the physician begin to evaluate or “rule out” if there is treatable viral activity? She/he cannot! How does that benefit the child or the family? It does not! For a physician to leave a child with overwhelming sensory issues, without a complete medical work up is unconscionable. In my opinion, to discount and ignore elevated viral titers in children and young adults remains one of the biggest travesties being perpetrated upon our children by the current medical system.

All of the ASD labeled children I am working up are affectionate. Many present with this ASD “phenotype”. Typically, their blood tests show elevated viral titers for the HHV6 herpes virus, Epstein Barr and/or CMV virus. In addition, many of these children also present with outright early developmental delays and motor issues. For these issues, I was taught by excellent professors to think of viruses, “rule-out viruses.”  

Most children having issues today become labeled as “on the ASD spectrum” without a proper medical workup and investigation for illness, chronic viral activation issues, etc. By artificially removing the medical criteria developed over decades past, the current “system” too quickly, attaches the label of ASD. The pediatrician unwittingly abandons the children and parents to the psychiatric community for behavior training and a life of isolation and despair. Parents are told to cope and forego their focus or desire to pursue real medical answers and real potential help for their children. How much worse can this get before parents and others step up and declare “enough is enough”!

In my professional opinion based upon over 40+ years of clinical experience, “Autism spectrum disorder” (not meeting strict Kanner criteria) with accompanying language impairment is in reality a medical disease (complex immune – complex viral) presenting as an encephalopathy (often viral) with “autistic” symptoms.

The language impairment in these ASD labeled children is part of the disease, not secondary to Autism Spectrum Disorder. Many of my patients (approx. 75+%) respond favorably to a medical protocol of anti-viral medications and diet modifications, eliminating known allergenic foods. This anti-viral component mitigates the effects of the viruses to the brain, while the diet changes reduce stress on the body, the brain, and the immune system. Additional improvement is achieved with the use of an SSRI (Selective Serotonin Reuptake Inhibitor). The SSRI is introduced not for “depression,” but as a pharmaceutical/medical way to treat temporal lobe hypo perfusion; a real, medically definable, physiologic CNS dysfunction evidenced on a NeuroSPECT scan

This medical protocol results in the elimination or severe abatement of the “autistic” like symptoms and behaviors and allows an increase in, a return of, higher cognitive function. The most common phrase I hear from parents of improving children is,

“It is as if a fog has lifted.”

and from speech and other therapists,

“This is not the same child I have been working with.”

These otherwise affectionate “typical/normal” (now much brighter cognitively) children are now placed in a position to be taught (not trained), allowed to “catch up” and progress with their peers. For whatever reasons, those in positions of authority refuse to acknowledge or investigate this treatable complex immune, complex viral medical problem. Instead, current focus and research is on “causation” with activated “gene expressions” or “complex genetic” ideas being proffered as the origin. The reality is a treatable underlying viral/immune process is being ignored! The “system” has become so biased, against the obvious, that good professors wishing to pursue research into a readily treatable complex immune, complex viral causation, have not only been refused funding, but fear losing their positions. These short-sighted money decisions at the clinical level mean the loss of the near immediate relief from ASD behaviors and mannerisms, improved, often excellent cognitive abilities, and improvement in the future quality of life for the child and family. Why?

Recently I met with a group of educators discussing the “differences” working with a medically treated ASD child (stressing an ASD “phenotype,” not developmental “autism”). They were aware the medically treated child was able to understand and be taught! These educators realized this was an emerging potentially regular child, not a child mysteriously born “miss-wired.” Thankfully, there are excellent academic professors who also know something is seriously wrong, literally acknowledging we are in a missed medical “pandemic”.

An appropriately focused and engaged medical community together with key medical and academic researchers, could create a pathway for a healthier future for the children and reduce the financial costs to all affected, including our social and educational systems.



The Duke study is remarkable in that 60-70% or more of children with Autism have de novo gene mutations (not found in either parent) that must have occurred after birth according to the results, not in the egg, sperm or early utero development as previously, and erroneously assumed.  This new finding reveals research should now be geared to finding out what environmental damage after birth leads to these mutations and/or what pathogens are acting as triggers.  Autism like Lyme/MSIDS is a pandemic and according to one Wisconsin LLMD, 80% of his Autistic patients are also infected with Lyme/MSIDS.

More and more is coming out about the pathogenic aspect of disease (even mental illness).  This is certainly true for Alzheimer’s & Dementia, as well as other autoimmune issues such as in this story:  While Susannah Cahalan’s issue was truly autoimmune, we learn of Patrik, who had Lyme:

Boy’s Lyme Disease Morphs into Autoimmune encephalopathy. It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain. Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.

This is another great read regarding the pathogen element within Alzheimer’s:

Then there’s this gem:  (Excerpt below)

MacDonald states that both worms and borrelia can cause devastating brain damage and that,


“while patients are wrongly declared free of Lyme and other tick-borne infections, in reality, too often they contract serious neurodegenerative diseases which can kill them.”

MacDonald made his discovery from 10 specimens from the Rocky Mountain Multiple Sclerosis Center Tissue Bank. All 10 showed evidence of borrelia infected nematodes. Five patients who died of Glioblastoma multiforme, a malignant brain tumor, and four patients who died of Lewy Body dementia also showed infected nematodes.  MacDonald used FISH, Fluorescent In Situ Hybridization, which uses molecular beacon DNA probes to identify pieces of borrelia’s genetic material which fluoresce under the microscope with a 100% DNA match.

In other words, this is no mistake.






Approx 4 Min

Excerpt from the documentary “My Kid Is not Crazy.”

PANS/PANDAS Awareness Day was yesterday but I didn’t get the memo until today.  🙂

While disturbing at the beginning, look how antibiotics made all the difference.  Less than four minutes of film that shows how devastating PANS can be.

How many children are slipping through the cracks and are being labeled “mentally ill?”

A prominent Lyme literate doctor in Wisconsin states that approximately 80% of his Autistic, and PANS/PANDAS patients have Lyme/MSIDS.  


Please note the estimate that 1 in 200 children in the USA are affected by it.

You as a family member, friend, or alert medical professional have the ability to share this information when you suspect it.  Speak up.  These kids need our help.

For more:  Despite the fact that published diagnostic guidelines for PANS/PANDAS were created in 2015, but some physicians still feel it’s not legit.

Physicians need to take this disease seriously.

According to Margo Thienemann, MD, clinical professor of psychiatry and behavioral sciences at Stanford, and the lead author of the portion of the guidelines that address psychiatric and behavioral interventions, treatment is at least tri-part:  

  • if infection is present, treat the infection
  • treat close contacts who may be exposing the child to infection
  • treat inflammation, which is thought to cause the brain symptoms