The Vicious Truth: Vaccines, Autism, P.A.N.D.A.S. and Autoimmunity
My daughter, Megan, diagnosed sixteen years ago this month with autism, has now been diagnosed as having an autoimmune disorder, or -- is it -- an autoimmune disease? Disease sounds profound but with all of her very serious symptoms for years, now worsening, it makes sense in my head, but in my heart --- it is devastating. We have tested twice now, using the antinuclear antibodies test, and both times it came out "positive," showing her body was indeed, fighting itself. Although Lupus has been ruled out, we don't know yet what type of antigen is causing the autoimmune response so for now, it is a nameless monster. We do know that estrogen seems to trigger these episodes for Megan.
Because Meg has had numerous symptoms of other disorders and diseases, such as motor and vocal tics, loss of speech, choreiform movements, agitation, rigid OCD (obsessive-compulsive disorder), enuresis, transient psychotic features, aggression, and then a culminating seizure, I have needed to read, research and try to understand the overlap so we could hopefully find both cause and cure. The key, it appears, is a 10.0, richter scale magnitude quote that Dr. Madeleine Cunningham used in her Autism One presentation recently in Chicago. Dr. Cunningham is a brilliant mind who, according to her website, is focused on, "the study of autoimmunity and behavior which is manifest in diseases such as Sydenham's chorea following group A streptococcal infection. Our study identified antibody mediated neuronal cell signaling as the basis for the choreic movement disorder. Other related movement and psychiatric disorders such as obsessive compulsive disorder, Tourette's Syndrome and Tics are under investigation for subsets that may be related to streptococcal infection and/or to autoantibodies which signal in the brain." She has been on the hunt since 1985 for Streptococcus and its many haunting manifestations. Many families of P.A.N.D.A.S. (Pediatric autoimmune neuropsychiatric disorders associated with Streptococci) children have reported a family history of Strep, Sydenham's Chorea, Rheumatic Fever and other autoimmune diseases. Here is that quote from Dr. Cunningham:
“If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever.”
To me, that significant sentence sums up so much of what I see in Meg, read in the research and believe in my heart. There are other researchers also looking into autoimmunity, behavioral symptoms, and illness. Here was a two part series, long but worth the read. I have taken excerpts that relate to autism, Megan and her autoimmine issues: Role of Chronic Bacterial and Viral Infections in Neurodegenerative, Neurobehavioral, Psychiatric, Autoimmune and Fatiguing Illnesses: Part 1
"Chronic infections appear to be common features of various diseases, including neurodegenerative, psychiatric and neurobehavioral diseases, autoimmune diseases, fatiguing illnesses and other conditions.1-4 Neurodegenerative diseases, chronic degenerative diseases of the central nervous system (CNS) that cause dementia, are mainly diseases of the elderly. In contrast, neurobehavioral diseases are found mainly in younger patients and include autism spectrum disorders (ASD), such as autism, attention deficit disorder, Asperger’s syndrome and other disorders.5 For the most part, the causes of these neurological diseases remain largely unknown.2
Neurodegenerative diseases
Amyotrophic lateral sclerosis
Multiple sclerosis
Alzheimer’s disease
Parkinson’s disease
Neurobehavioral diseases
Autism spectrum disorders.....These patients often display repetitive actions and develop troublesome fixations with specific objects, and they are often painfully sensitive to certain sounds, tastes and smells.140, 141Chronic infections appear to be an important element in the development of ASD.6, 16, 143, 144 In ASD patients more than 50 different bacterial, viral and fungal infections have been found,6 some apparently more important than others in causing symptoms....Environmental exposures to chemicals and heavy metals also appear to be important in the development of ASD.140, 141, 147, 148 The relationship between ASD and heavy metals may involve the role of multiple vaccines in ASD pathogenesis.130, 141 ASD patients often show their first signs and symptoms after multiple childhood immunizations, and the sharp increase in Autism rates occurred only after the multiple MMR vaccine came into widespread use.141 In some states in the U.S. children receive as many as 33 vaccines before they can enroll in school.140 Such vaccines can contain mercury and other toxic preservatives, and some may also contain contaminating bacteria, as found in veterinary vaccines.149
When neurological symptoms are present, infections of the CNS must be considered. Brain infections can stimulate glial responses, and the presence of viral and bacterial infections in nerve cells, can stimulate autoimmune responses against nerve cell antigens as well as the infections within them.155
Psychiatric diseases
Borrelia-associated psychiatric disorders
Schizophrenia
Neuropsychiatric Movement Disorders
Giles de la Tourette’s syndrome
Sydenham's chorea
....A role for streptococcal infections (PANDAS, see below) as causative or mediating agent in TS was established several years ago.3....As mentioned above, streptococcal infections are likely to play a pivotal role in these syndromes......35
Paediatric autoimmune neuropsychiatric disorders associated with Streptococci ('PANDAS')
Streptococcal infections in children are usually benign and self-limited. In a small percentage of children, however, prominent neurologic and/or psychiatric sequelae can occur. Post-streptococcal basal ganglia dysfunction has been reported with various manifestations, all of which fall into a relatively well-defined symptom complex or syndrome called paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS).52
-- Children with newly diagnosed OCD, TS, or tic disorder were more likely than controls to have had a diagnosis of streptococcal infection in the previous year.
-- Previous streptococcal infection was also associated with incident diagnoses of ADHD.
-- Similar results were found in a retrospective, cross-sectional, observational study of 176 children and adolescents with tics, TS, and related problems.55 In a case-control study of children 4 to13 years old patients with OCD, TS, or tic these disorders were more likely than controls to have had prior streptococcal infection in the 3 months before onset date.
-- The risk was higher among children with multiple streptococcal infections within 12 months.
-- Having multiple infections with group A beta-hemolytic Streptococcus within a 12-month period was associated with an increased risk for TS
-- Similar results were found in patients with typical symptoms of Tourette's syndrome.57 The frequency of elevated anti-streptolysin O titers was also significantly higher in patients with attention-deficit hyperactivity disorder (64%) than in a control group (34%).58
The pathogenic mechanism may be secondary to an activation of the immune system, resulting in an autoimmune response.
Autoimmune Diseases
Infections are associated with various autoimmune conditions.38-40 Autoimmunity can occur when infections like cell-wall-deficient bacteria are released from cells containing parts of cell membranes that are then seen as part of a bacterial antigen complex, or bacteria can synthesize mimicry antigens (glycolipids, glycoproteins or polysaccharides) that are similar enough in structure (molecular mimicry) to stimulate autoimmune responses against similar host antigens. Alternatively, viral infections can weaken or kill cells and thus release cellular antigens, which can stimulate autoimmune responses, or they can incorporate molecules like gangliosides into their structures.
In addition to molecular mimicry, autoimmunity involves several other complex relationships within the host, including inflammatory cytokines, Toll-like receptor signalling, stress or shock proteins, nitric oxide and other stress-related free radicals, among other changes that together result in autoimmune disease.”
That is a good summary of science and the mechanism to disease but let’s look at autism more closely. It has features of “repetitive actions” and “troublesome fixations.” Watching my daughter in an episode of Strep or Viral induced tics and OCD is heartbreaking. We know this can be P.A.N.D.A.S. and those families who do not have autism but are SOLELY battling Streptococcus, viral infections and/or the autoimmune, downstream effect, often report similar symptoms in their very sick children. One mother I recently chatted with on-line, told me that her son developed P.A.N.D.A.S. at age 9. His episodes of tics and choreiform movements became so severe and lasted longer each time that by age 12, he was diagnosed “autistic.” She shared this, "He has become more like autism the longer he has PANDAS flareups. This last flare brought trouble "finding words" as he put it.”
The troubling truth emerges – more mothers report P.A.N.D.A.S. soon after vaccination – “early P.A.N.D.A.S. symptoms in Jan. 2010, 28 days after a meningitis vaccine.” – “My son was diagnosed with Strep 14 days after his 2nd H1N1 shot. P.A.N.D.A.S. behaviors started about a month after that.” –Developed his first P.A.N.D.A.S. symptoms within the first week of getting chicken pox vaccine at the age of 10.” There is something eerie about the similarities that P.A.N.D.A.S. and Autism share. Here is a collection of behaviors and medical data described in 1943, of the very first children ever diagnosed with autism.
Dr. Leo Kanner, "Autistic Disturbances of Affective Contact"
- “Eating,” the report said, “has always been a problem with him. He has never shown a normal appetite.
- large and ragged tonsils.
- Following smallpox vaccination at 12 months, he had an attack of diarrhea and fever.
- He vomited a great deal during his first year, and feeding formulas were changed frequently with little success.
- His tonsils were removed when he was 3 years old.
- She quit taking any kind of nourishment at 3 months. She was tube-fed five times daily up to 1 year of age.
- He vomited all food from birth through the third month.
- the maternal grandfather, a psychologist, was severely obsessive, had numerous tics, was given to “repeated hand washing, protracted thinking..."
- He had been kept in bed often because of colds, bronchitis, chickenpox, streptococcus infection, impetigo, and a vaguely described condition which the mother-the assurances of various pediatricians to the contrary notwithstanding-insisted was “rheumatic fever.”
- obsessed interest-obsessive questions about windows, shades, dark rooms.
- frequent hospitalizations because of the feeding problem.
- He suffered from repeated colds and otitis media, which necessitated bilateral myringotomy.
- The paternal grandmother is “obsessive about religion and washes her hands every few minutes.”
- obsessive trends were reported - There was very marked obsessiveness - Daily routine must be adhered to rigidly; any slightest change of the pattern called forth outbursts of panic. There was endless repetition.
- possible postencephalitic behavior disorder.
- She insists on the repetition of the same routine always. Interruption of the routine is one of the most frequent occasions for her outbursts. Her own activities are simple and repetitious. Once blocks, beads, sticks have been put together in a certain way, they are always regrouped in exactly the same way, -monotonously repetitious - insistence on sameness -demanding not only the sameness of the wording of a request but also the sameness of the sequence of events.
- The sight of a broken crossbar on a garage door his regular daily tour so upset Charles that he kept talking and asking about it for weeks on end.
- Another child, seeing one doll with a hat and another without a hat, could not be placated until the other hat was found and put on the doll’s head.
- A situation, a performance, a sentence is not regarded as complete if it is not made up of exactly the same elements that were present at the time the child was first confronted with it.
- five had relatively large heads."
Infections – viral, bacterial – repetitive behaviors with tics and obsessive, compulsive behaviors.
The pattern did not emerge then that these children, these first canaries of the Public Health experimentation on the immune system, came from families involved in toxic chemicals, like mercury, especially ethyl mercury. The timing of the first vaccination programs with viruses, bacteria and also thimerosal, included as a preservative, was beyond Kanner’s view from Hopkins Psychiatry office. Because Kanner was a doctor of behaviors, he calculated the children and their families as cold, frigid and aloof. He did not flip it around and see that the toxins were forming an illness, toxins that could penetrate the blood brain barrier and let the microbes that science was trying to conquer, right into the brain.
Five out of eleven had large heads. How much longer will this tragedy continue?
Teresa Conrick is Contributing Editor for Age of Autism.
But what do we do to help these kids? My son has tested positive for 2 antibodies on the Mayo Clinic's paraneoplastic syndrome eval. Both are indicative of autoimmune encephalitis. He regressed at almost 4 into autism after many bouts of hand, foot, mouth disease and strep. Ugh. Wish I would've know earlier how bad viruses can be. He has since had many rounds of IVIG. They have helped some, but he is still so severely delayed at almost 6 yrs old.
Posted by: Esmith | August 28, 2017 at 09:53 AM
These testimonials are so important to all that struggle with exceptional children in our lives. Each with their own similarities and differences. Thank you for sharing, your journeys are empowering. Please never stop trying to find answers that work for your child. I will continue to seek answers, and hope someday to understand the whys to this debilitating quandary we FEED into daily. It's in the water we drink, the food we eat, and the air we breath. Some people are able to metabolize the heavy metals we pit into our bodies, others not so lucky. But there lies the answer... Metabolizing... Those that can't end up with their bodies/brains attacking themselves. Stop the polluting & the numbers will decrease. Namaste-
Posted by: Peg fisher | January 17, 2013 at 11:15 PM
Addendum to my comment: by all means get answers to why your child suffers. I spent 2 years doing so. But, for me, I turned my back on my hunt for the answers, and gave in to the try. I dont want to give up, but while im busy searching, my back was to my son and lost sight to what was important. Thr smile on my sons face when he sees me!!!
Posted by: Jess (Ethans mom) | November 10, 2011 at 11:34 PM
Proud mom here to an amazing Autistic 5 yr old little boy. So, found a life changing program/diet for my lil guy (and the family) and saw results within 24 hours. Its called Feingold Program. My non verbal Autistic baby boy, found "his words" (rule in our home is use your words). I will never forget our first argument. He told me no, he didnt want to do something. I appreciate every day I have with this brilliant little boy. We can continue to try to find out why our children are the way they are, we can dig, cry, fight, scream, and try so hard to blame something or someone. And you will miss the rewards of not only your child, but what you learn about yourself. Before your child was diagnosed, or even met your baby for the first time, how annoying was that 3 yr old in the store screaming and kicking? How disgusted were you to see a big kid in a pull up, or see his/her fingers in their nose? Now, you have a deep understanding for that parent struggling. Even more, you know that scream isnt just a tantrum but over stimulation. OMG, I cant get enough the big hugs and kisses. Milestones of a 2 yr old are being met at age 5. And im ok with that. And, my sons brain is fully developed, some parts just have a hatd time being reached. My son can read at a 2nd grade level, spell, write, hook up a surround sound system out of the box, but cant put on his shoes. We comprimise. I promise to teach him how to do the shoe thing, he has GOT to teach me how to connect the hardware. As for the PANDAS. It seems the "autism" is more of a symptom of the disease. Kind of like memory loss is a symptom of dementia. If my son had PANDAS, I would look into IVIG to help with the symptoms. After Feingold Program "treatment" my conclusion to my sons diagnosis was simply yucky food, yucky chemicals, and yucky feelings of mom and dad. Good luck to all on your journey, gift, search, or situation.
Posted by: Jess (Ethans mom) | November 10, 2011 at 11:20 PM
my son developed autism via some combination of autoimmunity, vaccines, or in utero infection...let me state that better however...I had autoimmune issues which he inherited, he had a viral infection while in utero, or I did, and he may have been exposed to lyme and strep and EBV, and vaccines tipped him over the edge or did the final dead. The DPT shot almost killed him, and I mean almost. He definately was exposed to mercury, from amalgams to a cement plant, to vaccines. He was also exposed to aluminum. At the age of 29, he started to have extreme psychological issues such as aggression (this was all sudden too), OCD, seeking behaviors (he wanted to be my shadow everywhere), not eating, wetting pants out of nowhere, resisting sleep. I contacted DR Cunningham to beg her for a test, and even though this is "considered pediatric", I had to go with my gut feeling he had it...and sure enough he was very autoimmune with high CAM KINASE 2's and as she remarked to me, probably the oldest pandas patient she has tested. So this is not pediatric. He also that very same year began to have symptoms of heart failure (fainting, syncoping)...think about it...the late stage of pandas would do that just like Rheumatic Fever! I called Dr Cunningham to test for cardiolipin antibodies, he had them. So, my son who had chorsoic advantageous movements all his life (and no doctor bothered to tell me why passing it off as interesting), sometimes debilitating him to walk for more than thirty minutes, was actually an infection gone bad in his body. His infection trigger may have been something different from strep, or it could have been a multipatogenic load with accompyaning neurotoxicity of an array of heavy metals.
Since we have put my son on minocycline everyday, worked on his nitrotyrosine levels (brain inflammation marker), worked on his ammonia levels and his mitochondrial dysfunction, his language has blossomed, his seizures lessened (and let me remark the end result of his heart problems gave him a pacemaker), and he is bright and alert, which we haven't seen for a very long time. Minocycline in combo therapy with AED's has said to help remove glutamate from the brain and down regulate immune cascades. We have also used monolaurin as Audrey has suggested, and worked on the gut at the same time. The immune system is connected to so many parts of the body, if gone awry, it can cause terrible diseases, the kind for which they say are untreatable. The infectious pathology of our children are there for the beholding...but, those who don't want to know this have done eveyrthing they can to blame it on bad genes. These brainiacs at CDC and NIH better get their heads together and or be fired for what they have done to our prescious children and their "recommendations for health". Defund NIH and CDC.
Posted by: kathy blanco | November 08, 2011 at 10:12 AM
Jessica-
Your comment- "I think its really important not to write things like this. Autism and PANDAS are two VERY different diseases. The basal ganglia region is in part responsible for speech so if that area is under attack then obviously speech will be a problem...but once the attack remits it wont be. In Autism speech hasnt developed at all." -
is just not accurate at all. Te basal ganglia is very involved in both of these disorders and " In Autism speech hasnt developed at all." - is absurd.
How will we ever stop regression of healthy children if we don't look for the medical issues? Not investigating or writing about it will keep everyone in the dark. Your idea of censorship - not writing about it - is disturbing.
Posted by: Teresa Conrick | October 16, 2011 at 09:52 AM
Imagine that ! A drug giving people Diabetes! Sort of like Parents suspecting Vaccines of Giving their kids Autoimmune diseases, Autism and possible Diabetes. It all sounds the same! something needs to be done (yet Billions are at stake) Who will be the VOICE of the children, well, their "Refridergator" Moms, Of course - the warm souls who see who is really wrecking havoc on their offspring and then DENYING IT! The TRUTH will be Known ...but at WHAT COST AMERICA!
Posted by: noreen | October 11, 2011 at 08:09 PM
One mother I recently chatted with on-line, told me that her son developed P.A.N.D.A.S. at age 9. His episodes of tics and choreiform movements became so severe and lasted longer each time that by age 12, he was diagnosed “autistic.” She shared this, "He has become more like autism the longer he has PANDAS flareups. This last flare brought trouble "finding words" as he put it.
Uh wow. I think its really important not to write things like this. Autism and PANDAS are two VERY different diseases. The basal ganglia region is in part responsible for speech so if that area is under attack then obviously speech will be a problem...but once the attack remits it wont be. In Autism speech hasnt developed at all. Furthermore, to say autism based on chorea and tics?? I believe that there needs to be alot more characteristics present to have a diagnosis of Autism
Posted by: Jessica | October 10, 2011 at 12:13 PM
Jenny;
I have been looking hard at all the supplements.
Vitamin B 6 in the form of P5P sounds great and it is used with taurine (which I do give)
Then on to the folic acid and its other forms for easier metaboizing; L-5-Methylietrahydrofolate, and there is a brand name called metafolin that is just loaded down with L-5-methylietrahydrofolate.
Metabolin was made by Merck for pregnant women, probably from the spina bifada era back some 30 years ago after they made so many drugs that depleted folic acid in the first place - leave it to a drug company to make a profit even on that.
Type that in and you get smiling faces of Merck advertisment.
Oh but to trust again, like I did once upon a time. But then again I did not trust Dr. Rimland for a very long time either, and he was actually a good guy.
Posted by: Benedetta | September 17, 2011 at 09:58 AM
Benedetta - It's nothing but tragic all around and when I read your posts I can only pray for God to bring your family some semblence of health. Death and disability are so under examined as our governments' funding of legitimate research is still aimed at certain markets and not others. Two versions of the same medicines can have two different effects on the same person. Generic medications can have different affects than their patented counterparts on the very same person. Different sources or isolation can affect the efficacy of a supplement. Using folic acid is neither wrong nor right from my viewpoint to yours. Every body is different and each person needs to make their own assessments and decisions. But it is about informed choice, which includes being able to learn and differentiate being options in order to be able to make the best decision. Without comprehensive information, our decisions are not really informed choices at all. And to me that only makes death and disability even harder to deal with. I apologize if I came across as judgemental. I definately wasn't trying to point out right or wrong, just that there is a difference between folic acid and folate, so that folks won't accidently throw the baby out with the bathwater.
Posted by: Jenny | September 16, 2011 at 10:49 AM
@Twyla "Also makes me wonder whether post-partum depression might be caused by changes in the immune system -- either inflammation in response to the trauma of birth, or because during pregnancy the immune system is suppressed in some ways, to prevent rejection of the fetus, and maybe this suppression stops after the birth."
Yes, very likely!
Also interesting that recent reseach indicates that suceptibility to depression in the elderly is linked to increases in inflammation in the body (as result of ageing, build up oxidative stress etc).
Depression in the elderly has been studied for decades from the social angle, with no clear clues or answers. Now it seems someone has had a lightbulb moment and finally decided to look into it from a different angle :)
Posted by: Natasa | September 16, 2011 at 08:55 AM
And while we are on the subject of folic acids and folates - perhaps it is more important to make sure no one is taking a seizure drug like DEPOKOTE that messes with folates and folic acids.
I love the advertisments for "BAD DRUGS".
I learn so very much, and Depokote is being sued for a lot of stuff - I hope they sue them into non existance.
Posted by: Benedetta | September 16, 2011 at 08:38 AM
But Jenny I could be wrong not to do it.
Posted by: Benedetta | September 15, 2011 at 10:08 PM
Jenny;
It was not turnip greens they found all over the inside of Gary's car - it was empty vitamin pill bottles that said folic acid.
I Don't want to confuse anyone, because life itself has long since addled my bbbrrain, and I find that I am mostly auld and confused my own self as life continues to beat the crap out of me.
It also was not spinach I stopped feeding my son, but those bottle of vitamins listed as folic acid.
But I am still good to the vitamin pill companies because i still purchase 100s of dollars from them every other month. I am up to about 10 of some kind of vitamin pills a day along with seizure medicine, and an upper ( a prescription meth) if my son drives. I also am up to about 10 or more vitamins a day for my daughter and even more than that for my husband.
Folic acid is not one of them.
Posted by: Benedetta | September 15, 2011 at 10:01 PM
In response to this comment, “If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever.”:
" Immune activation, which is the first step in the onset of autoimmunity, has been shown in patients with multiple sclerosis, autism spectrum disorders, Alzheimer's disease, Tourette's syndrome, and obsessive-compulsive disorder. Patients with these diseases also harbor elevated levels of autoantibodies that bind specifically to brain proteins"
"Up to 75-80 percent of patients with brain diseases have autoimmunity,"
http://www.aarda.org/infocus_article.php?ID=55
and
"about 80% of all those who present to a hospital Emergency Room with a Psychiatric problem have an underlying medical condition accounting for their symptoms. ...
Herpes simplex virus (HSV) is one of the most common and devastating causes of sporadic and severe focal encephalitis."
http://nepsychotherapy.com/id3.html
this SmartVax article states that 96% of children with autism that have antibodies against HSV also have autoantibodies against the brain and that these autoantibodies were "directly related to the severity of the autism.” http://smartvax.com/index.php?option=com_content&view=article&id=104&Itemid=54
77% had anti-amygdala antibodies which is probably significant given that abnormalities of the amygdala in children with autism have been found in several different studies. Here's one example: http://www.ncbi.nlm.nih.gov/pubmed/10781695
and another study found, "a vast majority of virus serology-positive autistic sera was also positive for brain autoantibody ... This study is the first to report an association between virus serology and brain autoantibody in autism; it supports the hypothesis that a virus-induced autoimmune response may play a causal role in autism."
http://www.sciencedirect.com/science/article/pii/S0090122998945883
Also, there are studies that show pathogens, aluminum hydroxide, and thimerosal can each trigger autoimmunity, and autism is more common in families with a history of autoimmune disease. (And vaccines contain all three of those triggers.)
For example:
pathogens: lyme disease is known to trigger the autoimmune disease rheumatoid arthritis (RA)
aluminum hydroxide: in a hamster study, 57% of the hamsters vaccinated for lyme disease developed RA, and when aluminum hydroxide was added to the vaccine 100% developed RA. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC97189/
thimerosal: "Therefore, thimerosal induces in genetically susceptible mice a systemic autoimmune syndrome" http://www.ncbi.nlm.nih.gov/pubmed/14736497
As for treating both strep and HSV, monolaurin sounds like it might be promising: http://lauricidin.com/tech_data/
Posted by: Audrey | September 15, 2011 at 11:30 AM
PTSD treatment for Veterans found ineffective.
Eli Lilly Zyprexa can cause diabetes.
I took Zyprexa a powerful Lilly schizophrenic drug for 4 years it was prescribed to me off-label for post traumatic stress disorder was ineffective costly and gave me diabetes.
-FIVE at FIVE-
The Zyprexa antipsychotic drug,whose side effects can include weight gain and diabetes, was sold for "children in foster care, people who have trouble sleeping, elderly in nursing homes."- *Five at Five* was the Zyprexa sales rep slogan, meaning *5mg dispensed at 5pm would keep patients quiet*.
-- Daniel Haszard Zyprexa victim activist www.zyprexa-victims.com
Posted by: Jehovahinfo | September 15, 2011 at 11:21 AM
@Benedetta:
Folate and Folic acid are not the same and the words should not be used interchangably as it could confuse people. Folate is from foods. Folic acid is a synthetic version.
There are lots of foods that can provide folate. As far as supplementation w/Folic acid goes, 400 mcg as part of a B-complex supplement is suggested for typical adults. But yes, over 15,000 mcg doses of the isolated synthetic, taken in isolation, have been reported to cause seizures. I would say that there is a huge leap to such an extreme as doses over 15,000 mcg, especially taken in a way that our bodies have not evolved to manage. More is not always better, and more is not always needed, when you talk about almost anything.
Posted by: Jenny | September 15, 2011 at 10:37 AM
In my own quest, to find answers regarding Chronic Fatigue Syndrome, which I believe has a connection with Autism and as I said in my earlier post, I believe is an autoimmune illness, I became very interested in the immune systems involvement in my condition. By calming my immune system with antihistamines and other things that suppress my immune system, my condition has greatly improved. Here's another article I have in my collection, regarding the immune systems involvement in anxiety/depression, allergic responses and "sickness behavior".
http://www.orthomed.org/resources/papers/hofdepr.htm
Psychiatrists have been very reluctant to accept the idea that depression (anxiety), which they know so well, may be caused by allergies to common environmental molecules such as foods, airborne particles, and chemicals. When patients were depressed and anxious, and at the same time suffered from diseases accepted as allergic, psychosomatic explanations (sickness behavior) were given (they just think they are sick; attention seekers; neurotic). This usually meant that a psychological explanation for the presence of the allergic reactions was invoked (in other words blame the patient). It couldn't possibly be, that they were actually born with more sensitive immune systems and their complaints were real.
The tricyclic antidepressants (eg amitriptyline) are third generation antihistamines. The discovery of the antihistamines was followed by their use as tranquilizers (they suppress histamine and thus the immune system). It's peculiar that "low dose amitriptyline" helps many CFS sufferers like myself. The tricyclics are effective in many patients because of their antihistaminic properties, not because they act upon the serotonin or sympathomimetic amine pathways. I have tried other antidepressant drugs SSRIs (selective serotonin reuptake inhibitors) that are shown to boost serotonin, the immune system and don't have antihistamanic properties; they have made my condition much, much worse.
Posted by: Rachael | September 15, 2011 at 10:18 AM
I use to give my son folate untill I heard a study that said it may cause an increase in prostate cancer.
Some 34 years ago my husband's cousin, Gary, came down with schzio.
After some time under the care of his parents, Gary's father and he started a bussiness of irrigating farms out in San Bernardino, that was where they were orginally from.
All was going great untill Gary came up missing for a couple of days. Gary had felt strange - pulled over on the side of the road beside an over pass and started seizing and had seizures for a very long time before he was found. His father said that Gary had heard folic acid might help his condition and had been taken mega doses of it. Gary's father was told that folate had caused the seizures.
Anyway Gary never got his liscense back.
Posted by: Benedetta | September 15, 2011 at 09:23 AM
From "across the pond":- Maybe fifteen/sixteen years ago there was an American study (from California?) that showed a man with Parkinson's Disease had an increased risk of a grandchild with an Autism Spectrum Disorder. There was a further study a few years ago that showed the same situation. Sorry I haven't got the references for you - could someone familiar with the workings of medical search engines please assist (thank you in advance).
N.B. My father was diagnosed with PD at 66. As a keen gardener he had made great use of Aldrin/Alldrin as a pesticide until it was taken off the market in the late 60s. I'm not a chemist so can anyone tell me if Aldrin persists in the body and its possible transgenerational effects?
Posted by: ElizaCassandra | September 15, 2011 at 02:48 AM
This is all so very interesting! Thank you so much, Teresa, for sharing this with us. I so hope that somehow this knowledge will help your daughter!
As an aside, AutismNewsBeat posted today over at Pediatric.About.Com a comment saying that he gave his 11 year old daughter a Gardasil vax, she came down with a 102 degree fever the next day, and it turned out she had a strep throat. He took this as proof that the fever was not caused by the vaccine. Who knows, maybe the strep infection was caused by the vaccine!
Rachael posted a link to a very interesting article in a comment below, mainly about this question: "Could an overactive immune system be the trigger for some people's life-threatening depression?" It talks about the effects of cytokines on mood, for example:
"When you inject rats with parts of bacterial cell walls called lipopolysaccharides, their temperatures rise, their sleep patterns change, they become less sociable and stop eating. And it isn't the bits of bacteria that trigger this so-called 'sickness behaviour', but the immune response to those bits. An injection of the cytokine interleukin-1 (IL-1), which marauding macrophages produce when they meet bacteria, makes the animals behave in exactly the same way. In other words, the rat studies showed that inflammatory cytokines directly influence behaviour." Sounds like vaccine-induced autism!
http://www.biopsychiatry.com/immunesystem/index.html
Also makes me wonder whether post-partum depression might be caused by changes in the immune system -- either inflammation in response to the trauma of birth, or because during pregnancy the immune system is suppressed in some ways, to prevent rejection of the fetus, and maybe this suppression stops after the birth.
Posted by: Twyla | September 15, 2011 at 02:45 AM
VACCINES CAUSE AUTISM
People please stop with the vaccinating, please. You know they made your child sick and you know that you simply cannot trust anything out of the mainstream medical field when it comes to vaccines-JUST LET IT GO IT IS ALL BULLSHIT AND SO ARE MOST OF THE DOCTORS
These are untreated viral infectons in an immunocompromised host,our children. DO NOT PUT ANY MORE VIRUSES INTO YOUR CHILD.
As an aside if your child is ANA positive (Anti Nuclear Antibody)LIKE MOST AUTISTIC CHILDREN then he must be infected with a retrovirus BY DEFINITION- The only way you can get foreign DNA into the cells nucleus so that the body turns against itself is by a RETROVIRUS. This may or may not be a xenotropic murine lukemia virus.
Patients with HIV that are children have many of the same neurodevlopmental issues that may completely resolve with antiviral drugs. The drugs may have tremendous side effects but it may be worth considering depending upon the health of your child. I am considering it for my child.
VACCINES CAUSE AUTISM
Posted by: WILLIE | September 15, 2011 at 01:23 AM
"For the most part, the causes of these neurological diseases remain largely unknown."
That goes for all the neurological-degenerative disease that are rampant. As a society, we never ask why we're so sick and disabled.
How bad do the numbers have to get?
Anne Dachel, Media
Posted by: Anne McElroy Dachel | September 14, 2011 at 10:58 PM
Thank you all for each of your comments. They add so much more to this truth.
Karin,
Thank you re folate receptor antibodies and yes, our brilliant DAN! doctor thought of that, too. We are waiting for the results.
Posted by: Teresa Conrick | September 14, 2011 at 10:17 PM
I'm so glad attention is being brought to this issue. My 7 year old son with autism also has eosinophilic esophagitis, folate receptor antibodies and PANDAS. Is it any surprise? No, not really. His body in autoimmune mode. I worry daily about what immune issue will be next. We were managing autism but to add EE and PANDAS we're struggling. Our child went from doing very well in school to needing a behavorial intervention plan. He began self-injurous behavior and OCD behavior that is controlling our life. Right now he can't stand to hear me speak. It makes him greatly upset. It breaks my heart. Please, give me back just plain old autism.
Posted by: Angela | September 14, 2011 at 10:07 PM
Brilliant!
I am going to put this argument before the school's principal at the next meeting, when they discuss my son's behaviour.
Elizabeth
Posted by: AussieMum | September 14, 2011 at 08:19 PM
Thank you Kathy Blanco for your continued posts and for not giving up! Our son is 14 and we've watched you trailblaze for your son since we joined A of A.
Posted by: Amanda Blinn | September 14, 2011 at 05:15 PM
Brilliant as usual, Teresa
John
Posted by: John Stone | September 14, 2011 at 04:46 PM
This is genius thank you for writing this.
Posted by: Katie Wright | September 14, 2011 at 04:15 PM
Thank you Teresa for a fantastic, yet horrifying, article.
Both my kids have suffered a myriad of chronic illness due to their wacky immune systems. My daughter is slowly but surely overcoming Multiple Infectious Disease Syndrome (chronic Lyme disease). My son continues to have occasional facial tics, but had been diagnosed with allergies, asthma, p.a.n.d.a.s., autism, and chronic Lyme and co-infections. Both of them keep me on my toes. We continue to address the immune and GI deficiencies, one day at a time around here!
I am going to post a link to your article. I think it's very important for any parent to read!
Thank you for all that you do!
Posted by: Ashley Morgan | September 14, 2011 at 03:35 PM
Why would anyone be surprised when strep infection follows after meningococcal or H1N1 vaccines- both of which contain mercury? The mercury wipes out the child's immune system and the child gets ill with a subsequent infection. Doctors, Why is this so hard to understand?
Posted by: Cherry Sperlin Misra | September 14, 2011 at 02:16 PM
Teresa, there are many folks working on the pathogen/inflammation connection to chronic disease. Please come to the Feb. seminar in Dallas sponsored by UNT Health Science Center. https://chronicillnessrecovery.org/
How do the pathogens get in? Some say that chronic inflammatory chemicals raise 1,25D so high that it shuts down the nuclear cell receptor (VDR) which controls gene transcription of over 1000 genes including antimicrobials. Other hormones are disrupted with high 1,25D: estrogen, thyroid, cortisol, androgens, adrenals, glucocorticoids. But no one is testing both D metabolites; just the 25D which the cell lowers when 1,25D gets too high. 1,25D is a fragile test and must be frozen to prevent being destroyed from agitation during shipping. Yasko is on the bacterial hunt too: she's found that H. pylori alters the CFTR gene so important for methylation. It is the pathogens, they continue the chronic inflammation, and they are very difficult to remove.
http://www.nytimes.com/2011/08/16/health/16cancer.html?pagewanted=all#
As they look beyond the genome, cancer researchers are also awakening to the fact that some 90 percent of the protein-encoding cells in our body are microbes. We evolved with them in a symbiotic relationship, which raises the question of just who is occupying whom.
"We are massively outnumbered," said Jeremy K. Nicholson,
chairman of biological chemistry and head of the department
of surgery and cancer at Imperial College London. Altogether, he said, 99 percent of the functional genes in the body are microbial.
Posted by: Kelly | September 14, 2011 at 01:37 PM
Dr. Nancy on the HPV vaccine / Michell Bachman
http://www.msnbc.msn.com/id/3032619/ns/nightly_news/#44510068
Of course, Dr. Nancy gives a "reality check" list of HPV supporters, the CDC, AAP, AFP...
...the same groups that cannot figure out why Autism is 30 times more common than polio...
One would think they would make an effort to talk to the family of the child involved...
Posted by: cmo | September 14, 2011 at 12:14 PM
When my THIRTY year old son started having sudden PANDAS symptoms (aggression, tics, increased seizures, not sleeping, OCD (shutting doors over and over) wetting himself, chorsoic movements and sometimes writhing and ticking), I was admitting Ryan at OHSU PORTLAND to find out what was going on. I took my computer with me as they tried to "sort it out"...more like just house him for a day or two with drugs galore...I saw PANDAS and the symptoms and I cringed...how can a THIRTY year old have PANDAS? Isn't this adolescents only affected? I shoved a paper at the "team" doing rounds that day, and although they appreciated the "good journal I got it from", they spurned me. In my heart of hearts I knew this was my sons problems. All they had for me was seroquel and other mind numbing drugs. I refused to give it to them, and then they REPORTED ME for being abusive for not giving it to him. The drugs actually worsened his behaviors and made him even more psychotic. I got a hold of Dr Cunningham and had Ryan tested, probably agains her better judgement. Ryan was so PANDAS, with two markers showing he had CAM KINASE antibodies. HE tested previously for NAFP and myelin antibodies as well, and he has some antibodies against cardiolipin (the heart muscle), which explains the fact he has a pacemaker. Ryan also has Lyme, Mycoplasma, and a lovely host of XMRV. He has High HHV6 and EBV titers. Ryan was also exposed to EBV mono in utero. Can you say a confusion of infections? Anyways, strep wasn't on my radar as much, but I am sure he has on and off infections for which he never was tested for. Ryan is probably the oldest patient Dr Cunningham has tested to be positive. Looking back, I saw some traces of it during his adolescents, but nobody knew what it was. At times his movements are so bad, I have to put him into a wheelchair. His markers were so high it was close to Sydehams
Chorea. We did the folate antibody test, and he was negative. So many things to work on, so many things still a mystery for us. The only thing that seemingly works is to keep him on Minocycline or Ceftin with antifungals and a natural protocol. We were this close to losing our beloved child to a disease that the "experts" spurned. Sigh..
Posted by: Kathy Blanco | September 14, 2011 at 11:38 AM
Dr. Cunningham said: “If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever.”
Exactly! UC Davis MIOND Institute did a series of experiments using baby rhesus monkeys who were exposed to maternal antibodies (IgG). Those monkey displayed autistic behaviors while those who were not exposed did not. Fascinating study. Here more information:
UC Davis Video (1/2):
http://www.youtube.com/watch?v=HoBTgHi4wrU
(2/2): http://www.youtube.com/watch?v=5odHXCZddhM&NR=1
http://dateline.ucdavis.edu/dl_detail.lasso?id=10077
Also, Nobel Prize winning geneticist Dr. Mario Capecchi, who has studied OCD behavior in mice, has said that the immune system and mental illness are connected and to treat mental illness effectively we must treat the immune system.
Posted by: Sarah | September 14, 2011 at 11:10 AM
1 in 5 now have a ,"Neurological Impairment,"; 1 in 6 now have a ,"Developmental Disability." It was not this way until the US> passed laws prohibiting vaccine makers from being sued in regular courts when a child became severely ill, Autistic or died from Vaccines. Once protected, children in the 1990's and beyond became vaccinated at the rate of 70 vaccines by age 7. Perhaps if we begin to call Autism and ADHD a Disease, rather than disorder, then stopping the growth of it will become more important or at least on par with stopping the deadly diseases of Chicken pox?.. (SARCASM-Chickenpox was not a deadly disease, just that young parents are being frightened to believe that it is to get them to vaccinate multiple times.) Our children are under assault from aluminum, embalming fluid, mercury injected into them as young as 3 hours old......Autism, P.A.N.D.A.S., ADHD are not mental disorders. They are Neurological behavior responses to deadly metals. Did you ever see a DEER get hit by a car? It jumps up and down before falling, in response to pain. Our children are jumping up and down. Science includes OBSERVATION. Millions have observed children getting behavioral DISEASES within days of Vaccinations. Science without ConScience..
Posted by: shell | September 14, 2011 at 10:22 AM
Teresa, great job, as usual.
You are absolutely correct about the dangers of toxic chemicals. The chemical industry, as a whole, believes that whatever they create and manufacture is safe and we are left to prove otherwise. Yet when confronted with evidence of toxcicity the industry claims they need more studies, and out comes a stream of "scientists" to annouonce studies that show no ill effects from things like mercury, BPA, or phthalates. These things are good for us, especially our babies. Then they tell the congress that they boought, that these chemicals are 100% safe and should not be regulated because that would cost jobs and cause the industry stock prices to fall, and then they wouldn't be able to contribute to the reelection campaigns.
Meanwhile, our kids, and us, are getting sicker and sicker and no one knows why? Yeah, right!
"Oh what a tangled web we weave when first we practice to deceive" Sir Walter Scott
Posted by: Harry | September 14, 2011 at 10:00 AM
Another terrific article Teresa! Thanks for talking about PANDAS. I'm the one with the son that got strep 14 days after 2nd H1N1 shot...PANDAS started a month later. If only I hadn't gotten those shots, I don't know what my life would have been like for the past two years. That's another familiar cry between PANDAS and autism. We went undiagnosed for months & our doctor told me it WASN'T PANDAS when I first found it online. Educating everyone (doctors, parents, grandparents, teachers, etc...) is a key to making sure kids get the correct treatment. And since so many PANDAS kids are asymptomatic for strep (including my son), it gets even trickier.
Thank you for your important work! Wishing you and Meg nothing but the BEST!
Posted by: Sarah Jane Alleman | September 14, 2011 at 09:58 AM
“If autoantibodies are proven to affect behaviors, it will change the way we think about and treat mental disorders forever.”
The above statement from the article hits home with me also. As a twenty-five year sufferer of Chronic Fatigue Syndrome, I have for a long time believed my condition to be an autoimmune illness; an immune system in overdrive being the culprit for the unrelenting fatigue, flu-like symptoms, insomnia and anxiety/depression I suffer from. I came across this interesting article that said, "Most of us associate depression with being run down and having poor immunity to infections. The startling side effects of the immune-boosting drugs turn that notion on its head. They suggest that some people who are depressed may actually be suffering from an over-heated immune system, and that damping down inflammation could offer a brand new way to treat routine clinical depression. It's a theory that recasts depression--one of the great plagues of our time--as a chronic inflammatory disease like rheumatoid arthritis. It's an interesting read.
http://www.biopsychiatry.com/immunesystem/index.html
Posted by: Rachael | September 14, 2011 at 09:03 AM
Teresa,
Have you had your daughter tested for folate receptor antibodies? These autoantibodies block the transport of folate from the blood to the cerebrospinal fluid, resulting in low levels of folate in the brain and an array of negative consequences for brain function.
My doctor said the symptoms of cerebral folate deficiency overlap to some extent with those of PANDAS.
Also, I have these autoantibodies to folate receptors myself, and have noticed that my cerebral folate deficiency symptoms tend to worsen around ovulation. The same folate receptors are also expressed on some parts of the ovaries, so it makes sense to me that ovulation might flare this autoimmune response (though that's just my guess).
Just a thought.
Posted by: Karin | September 14, 2011 at 08:59 AM
Thank you for this article. As a mother of a Pandas and Lyme child, it is so important to see that this information is getting out to the mainstream public. Education will hopefully lead to research and a cure. Having this disorder and disease s a living nightmare for my child. We need a real cure.
Posted by: Lynn bernard | September 14, 2011 at 08:52 AM
We now have one of our family at a teaching medical university hospital.
I will give the medical profession their due. They through a great deal of collective and accumulated knowledge was able to keep her heart, lungs and kidneys going untill she was able to fight off an infection through IV antibiotics.
But now we are done with those doctors and are back to the regular docs. Yes, I am sighing from exhaustion.
The regular doctor said to me, yesterday, as we stood over her bed "with anger in his eyes" that he knew a great deal!
I did not say he did not?
He said that he could tell by the look on my face that I did not believe anything he said.
He is almost a mind reader!
The look on my face developed right after he responded to my simple short sentence polite question with: "You are comparing apples to oranges".
I was biting my tongue and not saying what I thinking because I have a love one under his callous care - and after three decades of fighting them with politness, I still see no way around it.
I was thinking/and biting my tongue was that this doctor is mistaking dots for apples and oranges and he is incapable of connecting them.
So, we are almost back - and again living it on the edge, but we are all still living.
If I don't brain the doc and they send me to jail.
Posted by: Benedetta | September 14, 2011 at 08:39 AM