NIMH's Insel Needs a Lesson on PANDAS, PANS, Paresis and Autism
In a recent NIMH Director's Blog, Dr. Thomas Insel gave yet another update on PANDAS and PANS. Both of those are names describing two similar medical conditions that can evolve from either Streptococcus bacteria for the former, and for the latter- Lyme bacteria, Epstein Barr Virus, or Mycoplasma bacteria , plus "cause unspecified." We have been hearing a lot about these two increasing neuropsychiatric disorders but what really caught my eye was the title and comparisons being made by Dr. Insel. His chosen title for the blog, "From Paresis to PANDAS & PANS" is an ironic twist on what we, here on Age of Autism, have been talking about for years -- the evolution of disorders, especially those with neuropsychiatric features and how mercury has been a big player.
I think it's important to take a clear look at what that means by going back in time with the knowledge that we have today. In 2010, Dan Olmsted and Mark Blaxill's book, "The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic" described in great detail how General Paralysis Of The Insane, Paresis, as Dr. Insel called it, was a devastating and deadly disease. This Paresis, or GPI, was a disease that was directly connected to Syphilis, a truly horrible, sexually-transmitted bacterium that could be dormant for years and then reveal itself in sinister ways.:
For centuries, mercury use was widespread in medicine, and the consequences were disastrous. The greatest plague of Europe and America, spanning five hundred years, was syphilis, and the standard of care (the generally accepted medical treatment of the time) before penicillin was mercury. Our investigation has led us to believe that a man-made mercury compound, interacting with syphilis itself, caused the horrendous affliction called general paralysis of the insane. This illness, also called GPI, is a classic instance of the synergistic dangers of metals, microbes, and man. - p.2,
"The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic" -
Throughout their book, we see examples of this relationship between mercury and microbes right up to our present day, Age of Autism. In reading Dr. Insel's opening paragraph below, from his blog, it should remind us all that it is possible that PANDAS and PANS could too, then have their roots in man-made hands. Knowing that, it will be a kick in the stomach for these sick children if the new DSM-5 tries to embrace their immune-mediated illnesses into its pages of Obsessive Compulsive Disorder. These disorders that often present with neurological and psychiatric features may have immune and autoimmune roots and we know that bacteria and viruses can be triggers, but so can poisons and toxins, like mercury:
General paresis was a form of psychosis with delusions, hallucinations, and memory problems often of rapid onset and thought to be due to a general constitutional weakness. At least that was the explanation until 1913, when general paresis was shown to be caused by syphilitic infection of the brain. The first treatments were awarded a Nobel Prize in 1917. The advent of antibiotics 30 years later led to the virtual eradication of neuro-syphilis, as the disorder came to be called, in this country. The idea that mental or behavioral disorders could be due to infection is, therefore, not new but it remains surprisingly difficult to accept....We may be looking at a similar reluctance to accept an infectious cause of pediatric sudden onset obsessive compulsive disorder (OCD) – in a debate that has been ongoing for almost two decades... The onset has not always been linked precisely with a strep infection and the critical increase in antibodies to strep has not been evident consistently. Nevertheless, immune-based treatments have proven successful, leading to the growing acceptance of the concept of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS).
What Dr. Insel is not telling us is that Syphilis rarely presented as "psychosis with delusions, hallucinations, and memory problems." It was when you added mercury that these symptoms of GPI developed:
"IS GENERAL PARESIS DEPENDENT UPON PREVIOUS TREATMENT WITH MERCURY?"
BY POVL HEIBERG, M.D. 1938
Deputy-City Medical Officer of Health, Copenhagen
The classical studies of Jessen, Kjeldberg and Jespersen established with a high degree of certainty that general paresis was always preceded by infection with syphilis several years before. In particular, the excellent little dissertation by Jespersen
established this fact, but Jespersen refuted decidedly the theory which was at that time advocated by various authors that previous treatment with mercury is a contributory factor in the development of general paresis.The chief argument advanced by Jespersen was that the poisoning of a patient at the age of 20 years could not possibly bring about the appearance of the disease from 20 to 40 years later. Nowadays this argument does not seem particularly weighty. In recent years Aebly (1920) first advanced the view that the paralysis is directly attributable to the antisyphilitic treatment with mercury, and this view has been corroborated later by the findings reported by various investigators. Among these, particular mention is to be made of the experiences reported from the Charite Hospital,' Berlin, that the length of the latent period is dependent upon the amount of mercury employed.
So, a latent period is to be expected with mercury. Infections then, causing behavioral issues, may be only part of the story. More research could be extremely helpful in the area of microbes and their interaction with metals. By using Dr. Insel's MRI PANDAS pictures, we can see where there seems to be an area of the brain, the basal ganglia, and more specifically, the caudate nucleus, which become inflamed due to targeting by "anti-brain antibodies, triggered by a Strep infection." By coincidence, there seems to be a connection also to autism and the caudate nucleus --
"Prevalence of serum antibodies to caudate nucleus in autistic children:"
Since a significant number of autistic children had antibodies to caudate nucleus, we propose that an autoimmune reaction to this brain region may cause neurological impairments in autistic children. Thus, the caudate nucleus might be involved in the neurobiology of autism.
Again, connections are important in science often showing hints or direct hits on cause and effect. I have always found it curious why autism, which has many parallels with PANDAS and now also PANS, has been trapped in genetic research for years when it seems clear that it too, has many immune and autoimmune factors. My daughter has an autism diagnosis, acquired numerous Strep and viral infections over the years, then developed subsequent movement/vocal tics with severe OCD, and then a recent autoimmune diagnosis. She is not the only one. I would estimate that almost half, if not more of the children who receive an autism diagnosis begin, at some point, to display acute and also chronic, symptoms of PANDAS. Both Autism and PANDAS/PANS parents are looking for answers as to WHY their children have been stricken. As much as some researchers would like to say acute rather than chronic or immune rather than autoimmune, these children are truly sick with not enough doctors or treatments to pull them and their families out of the cycle of illness. Immune treatments, like the IVIG study that Dr. Insel reported for PANDAS, may be a key for autism as well. It is no secret that one of the original Wakefield subjects received IVIG in the father's quest to heal his son from vaccine injury:
And how, exactly, did the child recover from what the father believed was a vaccine injury? The letter reports: “In March of 1994, we met with Dr. [name omitted] and his immunological panel of tests indicated an underlying immunodeficiency as you can see by his report. His suspicions of the MMR vaccine in my son's case are mentioned in his letter. He was immediately put on 400 mg/kg of IVIG every four weeks at [clinic name omitted], and he responded quite well to the treatment.”
IVIG is intravenous immunoglobulin, administered to boost antibody levels in immune deficient patients and, at high doses, to regulate autoimmune conditions.
The father took his son to another leading immunologist, who reported that his measles virus titer was above measurable limits. Workups by a third doctor revealed his son “was suffering from indeterminant inflammatory bowel disease.”
This was the apparent new syndrome the Royal Free doctors were treating and that Wakefield was investigating – indeterminate or non-specific inflammatory bowel disease and autistic regression, in most instances associated in time by parents or doctors with the MMR shot. The father learned of the work at the Royal Free from his American doctors and was the first to fly his child across the Atlantic because he believed his son was showing the same pattern. The first case series, on 12 such children including Child 11, was published in The Lancet in 1998.
But this clear sequence – vaccination, illness, regression, chronic bowel inflammation, treatment, recovery – is nowhere to be found in the BMJ account of Child 11, even though Deer met with the father twice, in California and London, and also communicated with him via e-mail.
Absent, too, is the fact that Child 11 is now in college in California after graduating from high school with a 3.75 academic average.
The treatment the father cited, and the rationale for it, has been described in detail by the U.S. doctor who administered it. “A number of immunological abnormalities have been observed in patients with autism,” according to the text of comments he subsequently made at a meeting of an autism group. He said all the children he treated, which included child 11, had regressed after the MMR shot.
“Natural killer cells … that appear to play an important role in defense against virus infected cells and tumor cells are decreased both in numbers and functions in patients with autism. This deficiency may play a role in increased susceptibility to various infections that may in turn play a role in the pathogenesis of autism.”
In the early days of Leo Kanner's writings, we see the connection of the symptoms and behaviors of those first eleven patient to what we see today, in both Autism and PANDAS/PANS.
The evidence that Blaxill and Olmsted presented shows that mercury, especially ethyl mercury, was in the equation for many of those first eleven families. We know now, based on research for years, that many families with an autistic child also have a history of autoimmune illnesses, including Rheumatic Fever. Many also have had occupations dealing with metals, mercury being a strong factor, and we can't ignore vaccines as a huge contributor to immune manipulation. Knowing that, see how the symptoms described by Kanner in 1943, of those first eleven, show physically sick children and their families with dysfunctional immune systems. I would like to point out too, that the caudate nucleus, implicated above in both Autism and PANDAS, can be connected to movement and is very involved with OCD. :
- “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.
So again we see patterns that connect and intertwine. Isn't Autism's perseveration another way of saying OCD? Just recently these connections in neuropsychiatric disorders are starting to explode in the research and in the media:
"Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls?" - Scientific American, February 2, 2012
The sudden onset of a tic disorder in 15 upstate New York teens might be the result of a strep or other microbial contagion, not "conversion disorder"
"Short-term benefit from oral vancomycin treatment of regressive-onset autism".
...11 children with regressive-onset autism were recruited for an intervention trial using a minimally absorbed oral antibiotic. .... Short-term improvement was noted using multiple pre- and post-therapy evaluations. These included coded, paired videotapes scored by a clinical psychologist blinded to treatment status; these noted improvement in 8 of 10 children studied... these results indicate that a possible gut flora-brain connection warrants further investigation, as it might lead to greater pathophysiologic insight and meaningful prevention or treatment in a subset of children with autism.
"Treating Autism With Antibiotics" (France 3 19/20, Feb 17, 2012)
"Long term antibiotic therapy may be an effective treatment for children co-morbid with Lyme disease and Autism Spectrum Disorder." Med Hypotheses, 2012 Feb 22.
Patients diagnosed with Lyme disease share many of the same physical manifestations as those diagnosed with an Autism Spectrum Disorder (ASD)..In this study four male children (ages 26-55months) who have an ASD diagnosis and one male child (age 18months) who displayed behaviors consistent with an ASD, were assessed using the SCERTS Assessment Process Observation (SAP-O) form. ..The five children tested positive for Lyme disease and their SAP-O score was evaluated before and after 6months of antibiotic therapy. Each child was prescribed 200mg of amoxicillin three times per day and three of the five children were prescribed an additional 50mg of Azithromycin once per day. All of the children's scores on the SAP-O assessment improved after 6months of antibiotic therapy. The assessors also reported anecdotal data of improved speech, eye contact, sleep behaviors, and a reduction of repetitive behaviors.
"Scientists shocked to find antibiotics alleviate symptoms of schizophrenia - Chance discovery of link between acne drug and psychosis may unlock secrets of mental illness" - The Independent, Friday 02 March 2012
The National Institute for Health Research is funding a £1.9m trial of minocycline, which will begin recruiting patients in the UK next month. The research follows case reports from Japan in which the drug was prescribed to patients with schizophrenia who had infections and led to dramatic improvements in their psychotic symptoms....The chance observation caused researchers to test the drug in patients with schizophrenia around the world. Trials in Israel, Pakistan and Brazil have shown significant improvement in patients treated with the drug.....The first account of minocycline's effects appeared in 2007 when a 23-year-old Japanese man was admitted to hospital suffering from persecutory delusions and paranoid ideas. He had no previous psychiatric history but became agitated and suffered auditory hallucinations, anxiety and insomnia. Blood tests and brain scans showed no abnormality and he was started on the powerful anti-psychotic drug halperidol. The treatment had no effect and he was still suffering from psychotic symptoms a week later when he developed severe pneumonia.He was prescribed minocycline to treat the pneumonia and within two weeks the infection was cleared and the psychosis resolved.
It seems that illness, regression and inflammation keep happening to more and more children. Vaccination seems to be a big trigger. If we can see these patterns, including metals and microbes involved, then it is imperative that research to end that cycle and appropriately treat those stricken by these "mystery" illnesses, so they can heal and have a healthy place in this world:
"Mercury and autoimmunity: implications for occupational and environmental health"
"....In our studies, we have tested the hypothesis that Hg does not cause autoimmune disease directly, but rather that it may interact with triggering events, such as genetic predisposition, exposure to antigens, or infection, to exacerbate disease....To test our hypothesis further, we examined sera from Amazonian populations exposed to Hg through small-scale gold mining, with and without current or past malaria infection. We found significantly increased prevalence of antinuclear and antinucleolar antibodies and a positive interaction between Hg and malaria. These results suggest a new model for Hg immunotoxicity, as a co-factor in autoimmune disease, increasing the risks and severity of clinical disease in the presence of other triggering events, either genetic or acquired."
Teresa Conrick is Contributing Editor for Age of Autism.
I started to comment on this several times - about the treatments so far they are thinking about.
Of course I have to get in my ususal word Kawasakis. And Kawasakis' now a days treatment is IVIG which is not without some serious side effects. One is non bacterial or non viral meningitis and if that happens there is nothing the docs can do but let it run it's course.
Quinine was a few short years ago something you could buy at health food stores. My father-in-law had leg cramps and bought it for them. My daughter's main complaint of all her complaints is her legs (I fear some kind of inflamatory things going on there), but she is on large dose of tramadol for them. Tramadol can cause seizures at high level.
Also Quinine is the drug they are giving for those with lupus. Lupus an autoimmune disease - and part of lupus is high ANAs which is what my daughter and husband does have.
They still don't know how it helps malaria??? Can you believe that! But these malaria drugs are some how messed up with the immune system - look at the army's recent inventions and heart breaks!
I found that they still allow quinine in tonic water. Small dose but it is there. It is very bitter, so I mix half and half at night with a sugar free soda drink for all of mine. I wish that since they are treating lupus with it that they would research and see if it helps other autoimmune diseases.
We just started it a couple of weeks ago, but they do seem a little better, but it could be that the days are warmer and nicer which makes us all feel better. Or maybe it does work.
Posted by: Benedetta | May 02, 2012 at 09:23 PM
Hi and thanks everyone for such great and nice comments.
Maureen, I totally agree with you about supplements and food (gut issues)plus probiotics or natural anti-microbials. I see that many of these kids need more than a procedure of IVIG or a round of antibiotics. We are learning that these help many but the effects unfortunately do not last for far too many. They become a band-aid to a wound that needs many other interventions -- in addition.
We are making progress in knowing that and also that metals and microbes are the big players.
Posted by: Teresa Conrick | May 01, 2012 at 09:39 PM
I am a psychologist and have long seen the similarities between OCD and autism. When stress is decreased (and/or other factors that cause inflammation of the brain are decreased) OCD behaviors decrease. I have no doubt that Hg is implicated in OCD just as it is in autism. Thank you, Teresa, for an excellent article.
Posted by: healthforchildren | May 01, 2012 at 06:25 PM
Teresea, too bad they aren't paying you the big bucks for your research because it's surely more important than a lot of the other stuff the "scientists" are doing. I think this PANDAS/PANS situation might force a lot of issues - I hope it does!
Posted by: Jen | May 01, 2012 at 10:13 AM
Oh, I see veritas already spoke to the question of mycoplasmas--they are ALSO in the vaccines...
Posted by: healthforchildren | May 01, 2012 at 10:04 AM
Where is all the mycoplasma coming from? I thought it was supposed to be "rare".
Posted by: healthforchildren | May 01, 2012 at 10:01 AM
I too believe that the vicious cycle created by microbes and mercury (and most likely other toxins) may manifest as neuro-pyschiatric disorders and is often at the root of Autism, PANDAS and other mental illnesses. The trick in the treatment though is when discussing antibiotics and immune therapies like IVIG, one has to also stay focused on the importance of support nutrients and diet. I have found a distinct difference in outcome with this approach, between those who just receive antibiotics and or IVIG and those who receive a host of supplements including probiotics, Vitamin C, and alter their diet to include fresh organic vegetable juices and other nutrient dense foods. I know this crowd already knows all this, but I just don't want new parents to think antibiotics or IVIG alone are the answers when in actuality it takes a full arsenal to achieve the best results from this very valid and effective form of treatment.
Posted by: Maureen McDonnell, RN | May 01, 2012 at 09:34 AM
Dear Teresa,
Great post. Hysterical picture.
What is it going to take for these unelected bureaucrats to get with the program and join up in 2012? It is so sad but I don't think they will care about this issue until it happens to their kid, their grandchild, nephew....Only then will they put aside this self-serving nonsense and get to work and actually DO something about PANDAS.
I mean this is not even complicated. If you know even 2 kids like ours, what is happening to them is so obvious. Strep, Lyme + antibiotics + multiple vaccines + fevers (or seizures)+ REPEAT = immune system breakdown = immune system attacking itself = eventual brain damage. I mean we are not cracking nuclear secrets here. You know the Profiles in Courage award? Well we should have a Profiles of Cowardice award for a number of deserving candidates at the NIH.
Posted by: Katie Wright | May 01, 2012 at 09:00 AM
" ... Prof. Garth Nicolson said that large % of vaccines contain mycoplasmas, but the manufacturers do not want to look for them, because they are afraid of what they will find. No vaccine is safe and clean, and every vaccination is a Russian roulette. This in addition to mercury, aluminum, live viruses and other poisons...."
*****************
I agree with Dr. Nicolson, but with one exception. They aren't afraid of what MIGHT be found, because they know damn well what will be found if anyone starts looking.
The undying myth that society needs to shake, is that all the poisons being discovered in vaccines, somehow got there by accident.
Vaccines are designed by drug companies, for the express purpose of generating chronic illness. And it's hard to think of a better way of doing that, than to use a vaccine to infect society with Lyme disease.
All anyone needs to do is google Lymerix vaccine law suits, to see that GSK knows a thing or two about infecting people with Lyme disease.
Posted by: Barry | May 01, 2012 at 12:14 AM
Prof. Garth Nicolson said that large % of vaccines contain mycoplasmas, but the manufacturers do not want to look for them, because they are afraid of what they will find. No vaccine is safe and clean, and every vaccination is a Russian roulette. This in addition to mercury, aluminum, live viruses and other poisons.
http://israeltruthtimes.blogspot.com/2009/08/deadly-vaccines-garth-nicolson.html
Posted by: veritas | April 30, 2012 at 07:32 PM
My son is currently under treatment for his PANDAS/PANS. Through testing we discovered he has mycoplasma and tested postivie for a lyme strain - traditional medicine blew off all things - just autism! Wanted to label him Tourettes/OCD - turns out it is medical. Mom Warriors - keep fighting. Once we get infections cleared up, we'll likely be doing IVIG.
Diane
Posted by: Diane | April 30, 2012 at 05:57 PM
Though Father 11 and Deer must have discussed the sequence of Child 11's regression (MMR-viral pneumonia-autism), Deer chose to ignore all that and seize on something early in Child 11's medical records to justify his reporting. But Deer, it seems, didn't tell Father 11 that he was contradicting him (and Child 11's doctors) in his article. Wouldn't a journalist who wanted to produce an honest piece give Father 11 a chance to respond before publication?
Father 11 thought that Deer made an honest mistake. Given Deer's belligerence when his "mistake" was pointed out, I wonder how Father 11 feels about him now.
Posted by: Carol | April 30, 2012 at 12:57 PM
Teresa - You're articles are so thought provoking and spur people on to keep seeking out the clues and lead the way to prevention and cure. Some of your quotes of symptoms, today, reminded me immediately of a relative of mine who passed away due to complications of cirrosis of the liver. During the worst of times, he suffered from confusion, anxiety, possibly hallucinations, loss of memory, etc. For instance, he would put his legs through the arms of his shirt, as if they were pants, or throw up in a dresser drawer as if it was the toilet. But the doctors took that as a sign that he wasn't digesting protein correctly and ammonia was building up in his body, so he had to drink something every day to try and keep those symptoms at bay. I went back to try and figure it out way such symptoms would be recognized and treated in one disease, but not the other. I come to the conclusion that he must have been suffering from hepatic encephalitis, a complication of cirrosis. From googling more, I think he must have been drinking lactalose to control it, which had to do w/lowering ammonia in the system. So I wondered if there was any possible benefit for autism - knowing how mercury causes liver, glutathone, detoxification problems. Apparently, not an original thought - a company called Curemark has patented a lactalose formula for treatment of autism, due to its probiotic and enzymatic and antioxident properties and completed phase III trials last year. Nutritional deficiency, due to digestive problems, are also a concern in cirrosis patients. And why do some people get cirrosis but not others? Have some of them had infections in the past and then got exposed to mercury somehow to the point their immune system and detox system could no longer fight it? Do alcohol and mercury have similar effects on the liver and pancreas? Between you and Dan and Mark, you've given us all a lot to think about.
Posted by: Ask just one question | April 30, 2012 at 12:20 PM
teresa, thanks for this terrific research. the heiberg article from 1938 you identified really adds to the evidence that a link between mercury and GPI was part of the discussion at the time, but suppressed as the "victors" -- the treating physicians and psychiatrists -- wrote their triumphalist history of the conquest of syphilis with penicllin. the failure to learn that lesson has made it that much harder for the mainstream to recognize, or perhaps admit is the better word, the link between mercury and the rise of autism.
Posted by: dan olmsted | April 30, 2012 at 08:16 AM
Teresa;
A very interesting article, and I will be thinking on it for the rest of the day.
There was some interesting links - antibiotics, strep, vaccines, metals, IVIGs.
I noticed the girl on the movie "Greater Good" that was sick from the Gardisil vaccine - was dignosied with vasculitis. I wonder how that fits in with everything?
Does ischemia fit in here anywhere?
Posted by: Benedetta | April 30, 2012 at 07:39 AM