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BRAIN ON FIRE - From Autoimmunity To Madness

Brain on fireBy Teresa Conrick

I just finished Susannah Cahalan's superb book,  BRAIN ON FIRE - MY MONTH OF MADNESS,  chronicling her bizarre and frightening trip into, and then out of the disease, Anti-NMDA Receptor Encephalitis.  I have been writing about Anti-NMDA Receptor Encephalitis  for the past two years, as it seemed to me, to have connections to my daughter's Autism diagnosis.  Megan had, these past years, exhibited odd seizures, strange movements with vocal tics and aggression.  Testing did not show antibodies to NMDA receptors but did show antibodies to GAD65, though the two appear connected.

Susannah vividly takes us along her journey from healthy twenty-four-year-old to seizures, hallucinations and entrance into the land of psychosis, with a very possible one-way ticket, to the end of the line.  With loving parents and two brilliant neurologists,  Josep Dalmau, M.D. and Souhel Najjar.M.D, throwing her a lifeline, Susannah ascends from Dante's hell from the immune treatments targeted at reversing the disease.  It is a read that will keep you moving from page to page voraciously as you see the monster coming and want to see how it is ultimately killed.  It truly seemed like a miracle as it is a horrific disease, seemingly on the increase  and some don't make it out with one hundred percent of themselves, and some don't make it out at all.

Like daffodils in the early days of spring, my neurons were resprouting receptors as the winter of the illness ebbed.     Susannah Cahalan   p197

I want to thank Susannah  for sharing her story and making the plea that so many cases are going unnoticed  -- "How many children throughout history have been exorcised and then left to die when they did not improve? How many people are currently in psychiatric wards and nursing homes denied the relatively simple cure of steroids and immune therapy treatments that brought me back from the brink?"  

She also brings up Autism and autoimmunity:

Two particular fields of study, schizophrenia and autism, will likely gain the most from this landscaping of the elephant.  Dr. Balice-Gordon [Dr. Dalmau's colleague] believes that a percentage, albeit a small one, of those diagnosed with autism and schizophrenia might in fact have an autoimmune disease.  Many children ultimately diagnosed with anti-NMDA autoimmune encephalitis were first determined to be autistic.  How many children originally first diagnosed with autism weren't able to find their autoimmune diagnosis?  p 224   

My daughter, Megan, may be one of those children and I know that she is not alone.  Some common denominators that I have written about regarding Autism seem to have a possible connection to Susannah's story --- infections, hormones and cancer, with a specific focus on Melanoma.  I have discussed Melanoma  as some families seem to have a vulnerability to both Autism and Melanoma and how that may be, as they related to glutamate signalling.  Owning a cat, something Susannah also did, seems to put people at a higher risk for schizophrenia due to infection with Toxoplasma gondii, a parasite Susannah had a history of Melanoma, had recently been on hormones via birth control and there was the possibility of a bug bite [bedbug], too, all clues into causation.  Hormones seemed to be a trigger for Megan' s symptoms, as well. Susannah, in her book, further describes the changing landscape of autoimmune diagnoses:

Dr. Najjar, for one, is taking the link between autoimmune diseases and mental illnesses one step further through his cutting-edge research, he posits that some forms of schizophrenia, bipolar disorder, obsessive-compulsive disorder, and depression are actually caused by inflammatory conditions in the brain.



Dr. Najjar is in the midst of groundbreaking work that might finally sever the barrier separating immunology, neurology, and psychiatry.  A recent case of his centers on a nineteen-year-old woman who had been diagnosed with schizophrenia by six leading psychiatrists over the course of two years.....Her parents did not believe the schizophrenia diagnosis and eventually made their way to New York University, where they met with Dr. Najjar.  He ordered a right frontal brain biopsy--something he had learned from my case--that showed the presence of inflammation and antibodies targeting the glutamate receptors in the brain.  She was treated with steroids, plasma exchange, and IVIG treatment, which helped with the hallucinations and paranoia, but because the treatment was started so late, it is unclear if she ever will return to her former self. 

"Just because it seems like schizophrenia doesn't mean that it is,"  Dr, Najjar told me.  "We have to keep humble and keep our eyes open."
   p225

I  think that PANDAS, another immune system illness, is also part of this increasing landscape.  I am hopeful that we have some more supporters in the paradigm shift, that these illnesses that present as neuropsychiatric, really have their roots in the immune system.  To elaborate more on the young woman above "with antibodies targeting the glutamate receptors in the brain,"  here is a full article about her and here is the study by Dr. Najjar et al:

Glutamic acid decarboxylase autoantibody syndrome presenting as schizophrenia 

INTRODUCTION:

Glutamic acid decarboxylase (GAD) is the rate-limiting enzyme converting glutamate into γ-aminobutyric acid. Impaired GAD function can alter motor, cognitive, and behavioral function. Anti-GAD antibodies (GADAbs) can cause several neurological disorders. However, the association between anti-GADAbs and pure psychosis, without seizures or focal neurological deficits, is not well defined.

CASE REPORT:

A 19-year-old woman with recent-onset psychotic disorder was diagnosed with schizophrenia. Brain magnetic resonance imaging and cerebrospinal fluid analysis were normal. Serum anti-GADAb titers were elevated. Brain biopsy showed subcortical gliosis and microglia-macrophage infiltration. The clinical syndrome improved with immune therapy.

CONCLUSIONS:

Severe psychosis and mild cognitive decline without other neurological features, meeting the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision diagnostic criteria for schizophrenia, can result from brain inflammation associated with elevated serum anti-GADAbs.


Since my daughter's labs show a similar pattern with antibodies against glutamic acid decarboxylase 65 (GAD65), I am hoping we can have these honorable, brilliant doctors join us in helping our very ill children and see them in their true light  --  as children stricken with immune and autoimmune illness and disease  --  needing proper testing and treatments.  It has been almost seventy years since Dr. Leo Kanner and the field of Psychiatry took Autism under lock and key.  It is finally time for the truth to be known.:

"Presence of GAD65 autoantibodies in the serum of children with autism or ADHD.


Abstract

Antibodies against glutamic acid decarboxylase 65 (GAD65) have been detected in the serum of patients with several neurological disorders. The presence of antibodies against GAD65 has not yet been examined in the serum of patients with neurodevelopmental disorders such as autism or attention-deficit/hyperactivity disorder (ADHD). In this study, GAD65 antibodies and total IgG were assayed in the serum of normal subjects and patients diagnosed with autism or ADHD. GAD65 antibodies were detected in the serum of 15% of children with autism (N = 20), 27% of children with ADHD (N = 15) and of none of the controls (N = 14). The serum of 60% of autistic and 53% of ADHD patients reacted with Purkinje neurons in mouse cerebellum. Serum from 20% of ADHD patients reacted also with the cells in the molecular and granule cell layers and cells in the vicinity of the Purkinje neurons. No association was found between the titer of GAD65 antibodies and total IgG levels, and presence of seizures or mental retardation. None of the ADHD patients were diagnosed with mental retardation. Serum anti-GAD65 antibodies may be a common marker of subgroups of patients with autism and ADHD. Reactions of serum antibodies with the cells in the cerebellum in these patients suggest direct effects on brain function. The subgroup of children with autism and ADHD that tests positive for GAD65 antibodies needs further characterization in a larger study."

How many thousands of children continue to be labeled "Autistic" and are receiving no immune workup, no labs, no immune treatments and no hope for recovery or for improvement in their quality of life ? 

Teresa Conrick is Contributing Editor to Age of Autism.

Comments

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But 24 is when it all starts they say.
See - according to the scientists just like when you have a normal baby and it regresses at age 9 months or 18 months when ever it gets a vaccine: it is the same or these 20 to 30 years old when they regress -- it is just the way it was meant to be when they slipped out of womb.

Same with alzhiemers.

Reresstion is no big deal.

Anyone who has read this book knows the author was 24 at the time her psychosis began and had just seen her OB-GYN to begin birth control pills and for a general check up. One must wonder if the author received HPV vaccination at those visits. Any information on this?
24 years is also the appropriate timing for a TDaP booster. I'd like to know for sure that the author didn't receive either of these vaccines prior to her medical event.

What about Alzheimer's and Parkinson's?

Susannah and her doctors should be invited to speak at Autism One. I think the interest in her story among autism parents and practictioners would be huge.

Thank You Teresa for this book suggestion.
I couldn't wait for the 27 holds at the library and bought it today. I can't hardly put it down. Thinking of all the subjects problems and wondering if children like my son ( and other children with autism ) displaying similar symptoms are having autoimmune issues.

also Laura, Would You mind mentioning the formula of Xymogen ? It may be a possible Pandas treatment that would be more affordable compared to IVIG.
PANDAS book typo " Joshua's Missing Peace " - sorry

Cherry Sperlin Misra,
Unlike men, women are seen for well visits during child bearing years where they are given several medical interventions. I was diagnosed with auto-immune disease 2 years after giving birth.

Barry, additionally to that which you have mentioned- is the presence of aluminum in many vaccines which is difficult for the body to excrete, and it goes on stimulating the immune system , resulting in autoimmune disorder and probably some of the cancers. Mercury can be involved in that as well.
Does anyone here have an opinion as to why autoimmune disease is more common in women. This is not typical for mercury-related diseases, which are more common in men- Could it be that more women than men accept flu vaccines? Just a wild guess there. Any ideas?

This article is from AS (even though we parents have known this for a while- I'm glad science is catching up)

Immune Cells Linked to Regression, GI Distress & Repetitive Behaviors - Autism Speaks Science News

http://www.autismspeaks.org/science/science-news/immune-cells-linked-regression-gi-distress-repetitive-behaviors

Well I guess that it makes a differnce with the Yogurt because Greek Yogurt is thicker and that is because they took out the liquid and thus the carbohydrates -- and it has more proteins and -- and - and it has more differnt types of strains of bacteria in it.

http://sanfrancisco.cbslocal.com/2012/05/22/healthwatch-is-greek-yogurt-really-better-for-you/

So I suppose Keifer would be too?

Still eating nothing but brown rice -- just thinking about it makes my belly hurt.

Tereasa I did not mean to get off topic with brown rice, but it sounds like a good book to sit by the fire and read this winter.

Barry;
I hope you don't mean you will stop blogging because I get a lot out of your blogs; and I would miss you way too much! AND they way you put things are so true!.

I think Nick was paying you a compliment; and believe me if we don't speak out who will?

What is that saying if all good men stay silent -- besides they don't have to kill us --- we are just a fringe group of nuts to be made fun of.

Patrick: I looked at the rice diet. They also are sticking kiefer grains up the other end.

One of my favorite Uncles esd Bob Keifer - his family were Germans that settled in Ohio.

I did not know that Keifer was buttermilk or I would have teased him. Uncle Bob Buttermilk--sounds like a good name for some food brand.


What is with all the keifer grains - every one is talking about???? Is it because it is a way to get straight Lacillus type bacteria that have not been killed or pasterized?


Keifer is a name butter milk was given by those living in the Caucasus Mountains -- North of the Black Sea. They hung a bag of milk on the door, so it would get shook up when they opened the door. That is all it is- buttermilk?

I suppose that it could easily contain another kind of safe bacteria besides what is in regular buttermilk, or even active yogurt today-- that could help recolonize the colon.
We might go to pub med and see if other researchers have try to repeat this experiment?

Then there is the arsenic thing found in rice; that Hera is talkig about. It is true -- I don't know where this rice has been raised ? Lousiana is the top grower of rice and they did also grow a lot of cotton.

Arkansas also grows a lot of rice and I wonder if their rice too has arsenci?
At the time this all came out, I was not too interested because we rarely eat rice -- but after reading about the rice bran I might reconsider. It sure beats the endocet my daughter is using to dull her stomach pains. My son does alright as long as he stays on a fairly free carb diet.

Barry,

I don't care anymore because all they can do is kill me, but you are risking the same future by your accurate description of what "they" are doing.

**************

Nick,

I hadn't been looking at it that way. But if what you say is right, then none of my opinions are worth bringing that to my family or myself.

And with that comment, I think the smartest thing I can do is just stop blogging about vaccines altogether. Thanks for the advice

Here are two more studies on Anti NMDA receptor encephalitis. The first study (below) links it to late-onset autism:

Anti-NMDA-receptor encephalitis: a new axis-III disorder in the differential diagnosis of childhood disintegrative disorder, early onset schizophrenia and late onset autism.

http://www.ncbi.nlm.nih.gov/pubmed/22588963

Clinical Features, Treatment, and Outcome of 500 Patients with Anti-NMDA Receptor Encephalitis (PL01.001)

http://www.neurology.org/cgi/content/meeting_abstract/78/1_MeetingAbstracts/PL01.001

Hi Laura,

Are those drugs (Xymogen and luecovorin)by prescription? Did you have antibodies tests done prior to starting your son on those drugs? If so what tests did you have done? I'd like to ask my sons neuro about this. Thanks

Hi Benedetta, Patrick
One thing you may want to be careful of, is where you get your brown rice from .
Apparently a lot of brown rice now has very high levels of arsenic.It seems that rice which is grown in or near old cotton fields is particularly at risk.
Scary when you start wondering whether rice from India may be safer than rice from the US!

"Psychiatry is to medicine .. what astrology is to astronomy."

Vaccination is to Hippocrates as nuclear war is to Gandhi.

Please let us stop bombing our children!

Science is fine but we should know by now that the "science" of autism and the ASDs is political science, hijacked by those who are bringing us autism and the ASDs.

Simply stopping the insane barbaric practice of "vaccination" has a demonstrated GOOD chance of radically reducing the problem we the people have with our increasingly sickening children.

No one else will do this but us.

My son did not qualify for IVIG. So i started him on an oral IG product by Xymogen. His health has been much improved. In addition, his reading comprehension has skyrocketed. Before the oral IG, we had also started luecovorin for folate autoantibodies with some slight improvement. But the addition of the oral IG seems to have really kicked things up a notch. He is losing many of his autistic/adhd symptoms since starting IG therapy.

Benedetta,
I have been wondering about this 7 day brown rice diet that can correct bowel issues. You can also combine this diet with probiotics:
http://users.sa.chariot.net.au/~dna/IBD/index.htm

The connection between mental illness and immune dysfunction is well know according to Dr. Mario Capecchi. Dr. Capecchi is a genetics researcher who won the Nobel prize for his research on knockout mice. He said to properly treat mental illness we should treat the immune system. He said immune dysfunction in the brain leads to behavioral dysfunction. He does not advocate SSRI's nas a treatment.

Please watch this excellent interview with Dr. Capecchi here:

Utah scientist makes breakthrough in mental illness research

http://www.ksl.com/?nid=148&sid=10947928


Cherry Sperlin Misra
I have been trying to figure out how it works for a long time too.

It troubles me that they put the mercury in the IVIGs too - so that no staph can grow - as a persevative.

And IVIGs can cause an immune responses that can be dangerous too. It can cause meningitis immune response. But it will pass.

IVIG is made up of the blood of a 1000 donors -- it is spun down and the IgGs are extracted.

I have heard a simple explaination that these IgGs retrain the immune system of the person receiving them.
And I have read some research papers that say there are different sub types of IgGs and these IgGs are attacking mitochondria.

However; I also know that my sister-in-law is missing a lot of IgGs she does not have them. I wonder if she does not have any, or just not the right kind? She cannot fight off any pathogens right now, and yet something is still attacking her ATP (energy produced by the mitochondria).

I have also found research papers saying that the hypothamus calls for the production of IgGs and IgGs do repress and controll the production of T cells produced by the thymus. Thymus is lymph tissue but considered part of the endocrine system.

I almost think that perhaps no IgGs are being made and T cells are running wild?

All of this again involves the endocrine system.
This is also the place where most psych drugs do work, Psych drugs do work on the HPA axis -- HPA stands for hypothalmus, pituitary and Adrenal.

And I have read research that the biggest endocrine organ of all is the stomach or GI track. It has lymphs lining it. It also can produce IgGs!!!!

And I have been reading a lot of reasearch papers of what kind of foods causes the production of more IgGs. It is mostly fiber that does it.
Guar Gum does - it is used in foods as a thickener, but to buy it out right is no longer possible because it has been banned now in the United states. At one time people use to use it to lose weight. It was taken with water were it swelled up in the GI track giving a feeling of fullness but it could also block up the GI track.

Wheat Bran -- research indicated that it did not produce IgGs --and darn -now I have a bunch of it I bought from Krogers -- what do I do with it now?

Rice bran does cause the production of IgGs and I am going to try to get some of that. It might be as good as Guar Gum.

That is about all I have found. I do wonder about flax seed flour and oat bran? But I have yet to find any research done on those.

Meanwhile though; This article is great and the title says it all "Brain on Fire".


Thanks for writing about this - very interesting!

Inappropriate over-focus on aberrant behaviors in autism, rather than their medical root causes, is such an unscientific and unethical response to the problem. This odd "blame the victim" approach is part Calvinism and part avoidance.

Some people want so badly to believe that one's individual will is at least partly to blame for mental afflictions -- the way stomach ulcer victims once were told they simply responded incorrectly to stressors.

Think of all the parents "celebrating autism" who don't realize the ludicrousness of their medical ignorance. One day they'll realize their sad folly of celebrating neuroinflammation, rather than alleviating its torment.

Cherry,

Mercury in addition to being a neurotoxin is also a potent immune stimulator or adjuvant.
Pink disease was the result of mercury ingestion, Kawasakis is the result of injection.

Barry,

I don't care anymore because all they can do is kill me, but you are risking the same future by your accurate description of what "they" are doing.

Another great piece from Dr. Conrick (I will call her that because she knows more than any doctor who has treated my children). Also, Bob Moffitt is right on the mark - - six psychiatric diagnoses and four bucks will get you a cup of coffee (and not much else). This is the paradigm that needs to shift in our country/culture. People need to understand these "clinical" diagnoses by the psychiatry/psychology field are nothing more than structured guesses with no biological basis whatsoever.

raising serious questions .. regarding the long-over due paradigm shift, that illnesses presenting as neuropsychiatric, really have their roots in the immune system."

**************

I agree, but I believe the paradigm shift needs to be MUCH broader in scale.

Because immune dysfunction is not just behind neuropsychiatric disorders... its behind everything from childhood cancers, to childhood autoimmune disorders that are fast becoming too numerous to list.

And behind all that childhood immune dysfunction, is a vaccine schedule too insane to comprehend ... that's literally chock full of vaccines that have been cultured on aborted human foetal tissue.

Our children's immune systems are intentionally being jacked into hyperdrive.... at EXACTLY the same time as a variety of human cells (.. including, but in no way limited to the central nervous system) are being injected into their blood streams.

Isn't it odd that the "medical experts" who came up with strategy, .... have no idea whatsoever why our children's immune systems have suddenly started to make antibodies to the own bodily tissues?? Tissues which, coincidentally, are identical to the ones that THEY injected into the blood stream of those same children??

The health of our children is in tatters, and it's a 100% man made problem. Made by very, very sick men.

Mary I want to know how you got a doctor to do this?
They have a new treatment for Kaswaskis,that is not IVIGs, but it also given by IVs too.
it is an immune reducer.

Thanks for the book suggestion. Since we think our child has PANDAS this will be interesting reading. Just wish doctors would
read all that we do. AND run the tests we want.

Another book about PANDAS is "Joshuas Missing Piece" , but the child is NT. but even my childs teacher said "I thought you wrote
this book, because the child acts like yours"
Wish we could do IVIG, but no dr. here and HBOT seems to help our child greatly.

No doubt that psychiatry needs an overhaul. Dr. Amen has made an interesting statement that psychiatry is the only field of medicine in which "we dont look at the organ involved" (the brain). There is a very interesting interview of Dr. Amen by Dr. Mercola- for those who are interested.

Mary R- Thankyou for your additional comment. Teresa Conrick- Thankyou for this interesting piece. Lets keep up this thread.I would like to go a bit further and ask- Could there be any further connection to the presence of metals in the child's body?
This relates to something that puzzles me. There are many people who are convinced that Kawasaki Disease is a mercury-caused disorder. Indeed it has so many features consistent with Pink Disease. However, one pediatrician I enquired from seemed to discount the mercury theory "because it responds so well to IVIG" I believe that it is nearly impossible that Kawasaki is not related to mercury, so then what is the relationship with IVIG?
Mary R- How did you even think of giving your son IVIG for autism symptoms?

This illustrates the reason why IVIG was a great first treatment plan. We started before my son was three, meaning he had the chance to heal the immune system while the brain was still developing. It all worked. Healthy, recovered boy today but I shudder to think what might have happened if we did not do what we did, when we did.

I ran into a 70 year old woman that had been on Dilantin all her life up untill menopuase.

I think that the Kanner kids were just the tip of the iceberg -- but then we all do don't we.

The lady said she had her seizures at midnight on the full moon - she did not mean that literally - she just meant she had her seizures in her sleep around her period.

Catamenial epilepsy

She only had four grand mals in her entire life. She knew she had a seizure when she would not wake up in the morning but slept 12 hours -- and when she did wake up had a metallic taste in her mouth.

And goodness knows it is like Bob Moffitt said what is this barrier even exits???
And he could add to these three -- just general medicine and common sense.

I had my time to think on all this as I watched over my daughter in the hospital in a state of psychosis and her legs killing her.

The psychologist ran me out of the room to talk to her, and then the doctor told me he was releasing her but this was an emergency and she needed help - he stayed just long enough to make sure that I made an appointment with her regular doctor for that very day and left.
Emergency and he did not prescribe seroquil all night long???

I look forward to reading this book. Thank you for posting this.

Thanks Theresa. I'll have to order a copy of this book. Sounds like something all doctors should read.

Extremely!! interesting..I so hope research moneys can be more directed toward these kinds of studies, I get so "bummed out" when I read daily that huge amounts of funding winds up in the pool of "genetics". This is somewhat reminiscent of "Welcome Silence", Carol North MD. ..describing her journey into schizophrenia ending in renal dialysis as her cure. I don't recall subsequent research , twenty years later, and yet it seemed such a promising direction to take.

"Brain On Fire" is a breathtaking book. A must-read.

We still are in the dark ages with psychiatry, there is still so much progress to make. Meanwhile so many are suffering.

Bob, great quote: "Psychiatry is to medicine .. what astrology is to astronomy." Very true.

I like Dr. Najjar's quote: "We have to keep humble and keep our eyes open." Don't you wish more doctors would have such an attitude?

"Dr. Najjar is in the midst of groundbreaking work that might finally sever the barrier separating immunology, neurology, and psychiatry."

"How many thousands of children continue to be labeled "Autistic" and are receiving no immune workup, no labs, no immune treatments and no hope for recovery or for improvement in their quality of life ?"

Theresa .. these are critical observations .. raising serious questions .. regarding the long-over due paradigm shift, that illnesses presenting as neuropsychiatric, really have their roots in the immune system."

As some sage once observed:

"Psychiatry is to medicine .. what astrology is to astronomy.

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