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).
"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:
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.