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NEWSLETTER #4

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NEW BREAKTHROUGH IN THE UNDERSTANDING AND TREATMENT OF AUTISM!

 Just one week ago, in the Annals of Clinical and Translational Neurology our good friend, Dr. Robert Naviaux, published the results of his preliminary study on the treatment of autism with low doses of the medication suramin. Ten male subjects, ages 5-14, were matched by age, the severity of their autism, and IQ, into 5 pairs. They were then randomized into treatment groups, to receive either intravenous suramin, or saline. The study was designed as a double-blinded, placebo-controlled pilot study. A link to the full paper is provided: http://onlinelibrary.wiley.com/doi/10.1002/acn3.424/full

Since this paper is designed to be a scientific publication, the results of this research may come across as somewhat dry and unimpressive. Specifically, what Dr. Naviaux and his team discovered, were that the ADOS-2 comparison scores were improved by -1.6 (p=0.0028) in the suramin group and did not change in the placebo group. Since this was 1.6 points in 6 weeks, we can estimate an approximate rate of about 1 point/month. Let’s translate that into English: an improvement of -1.6 in the ADOS-2 means that a patient who was defined, by that test, as being “on the spectrum” and clearly diagnosed with autism, (defined as having an ADOS score of 7-10) would have improved so extensively that they may no longer be found to be on the spectrum after being treated for a few months! For example, if an average child with autism had an ADOS score of 8, if they continued to improve by 1 point for every month they were treated, after 2 months their score would be a 6, and have improved enough to no longer be diagnosed with autism.

“Secondary outcomes also showed improvement in language, social interaction, and decreased restrictive or repetitive behaviors.” Again, this is a carefully worded scientific statement that does not do justice to the degree of improvement in the children who received suramin. More impressive is the materials, included in some of the references below, which are the direct observations of the parents of these children who were elated by the profound improvement they discovered with the use of suramin.

The parents of Subject #1 wrote: “Can you imagine being the parents of one of the locked-in patients in the movie Awakenings? Our son is 11 years old. At 1.5 years old he knew his colors, shapes and numbers in English, Spanish and Farsi. He could put puzzles together faster than anyone his age. He was social and engaged others. By 3-years of age all of that language and communication was lost and he was diagnosed with Autism…..when we started in the UCSD trial of suramin, he could speak in short, 2-3 word sentences and sentence fragments. He had a nasal voice that sounded “pitchy” and was prone to echoing other people’s words and getting hyper and over-excited, running to and fro while making “stim” movements with his hands, in any social settings…..

          Within an hour after the suramin infusion, the nasal quality to his voice disappeared. The stayed normal sounding for more than 3 weeks. The first night after the infusion, a new calmness was apparent….he seemed happier in his own skin.

          The first night, after eating all of his dinner, he calmly looked up at me and said “I finished my dinner.” He had never said this before….two days after the infusion, at his follow-up visit to the infusion center he said clearly to the nurse “I want to go to the bathroom again.” This was probably the longest sentence of his life. Six days after the infusion he started asking to try new and different foods…..he became more interested in social contact, making and holding eye contact with his therapist for long periods of time, and even tried to get her to laugh at a new game he was inventing—He actually tried to make someone else laugh!

          We noticed a new engagement and focus in trying new things. He learned to count from 100-200 for the first time. We noticed much new language and spontaneous use of normal full sentences to express his needs and wants.

          By about 5 weeks after the infusion, most of these changes had gone back the way he was before.”

         Similar remarkable improvements are noted by the other 4 parents whose children received the suramin infusions!  There were no severe side effects of these infusions, and a mild, self-limited, asymptomatic rash was noted as the only minor side effect of treatment.

In previous Newsletters, I have introduced Dr. Naviaux’s understanding of many forms of chronic illness as being well described and understood by his model of the Cell Danger Response. A major component of that model is the concept that purinergic receptors are involved in perpetuating that response, and that once the “danger” is gone, the body needs to hear the “all clear” signal to resume normal functioning. Dr. Naviaux has pioneered the concept of treating purinergic receptors with the medication suramin (which blocks up to 19 of the known purinergic receptors) and this study, while a preliminary pilot project, gives credence to this concept and makes us eager to see more extensive research in the use of uramin (or other puringeric blocking agents) in the treatment of not only autism, but Chronic Fatigue Syndrome and other illnesses characterized by persistent inflammation.

Dr. Naviaux has planned a more extensive study of the treatment of autistic children with suramin in the coming year, and we hope to participate with him in a study of the treatment of CFS with suramin soon, as well. I hope I am conveying the excitement we have about the possibility of obtaining a safe and profound way of re-booting the immune system in the near future. Should any of my readers be interested in contributing to this research (and these funds are needed) please contact Dr. Naviaux’s laboratory as soon as possible.

I hope that my readers will understand that suramin, at this time, is only available as a research tool, and while thousands of patients are eager to try it, this will only be possible when these research projects have been completed…..so please be patient.

Here is a list of resources Dr. Naviaux has provided me as a source of additional information:

Naviauxlab.ucsd.edu

http://health.ucsd.edu/suramin

http://www.nofone.org/dr-naviaux-q-and-a-suramin
http://www.sandiegouniontribune.com/business/biotech/sd-me-autism-questions-20170526-story.html

https://www.thesun.ie/news/1053945/suramin-drug-gets-dramatic-results-treating-autism-in-children-after-just-one-dose-100-years-after-it-was-developed/

http://www.latimes.com/sd-me-autism-drug-20170526-story.html
http://www.webmd.com/brain/autism/news/20170526/could-a-century-old-drug-help-ease-autism-symptoms#1

https://www.dh.se/100-ar-gammal-medicin-ger-hopp-till-barn-med-autism/

https://consumer.healthday.com/cognitive-health-information-26/autism-news-51/could-a-century-old-drug-help-ease-autism-symptoms-723106.html

http://www.medicalnewstoday.com/articles/317660.php

http://www.ctvnews.ca/health/century-old-drug-may-help-children-with-autism-symptoms-study-1.3429938

http://www.satprnews.com/2017/05/26/small-non-profit-n-of-ones-unconventional-vc-like-approach-offers-new-hope-for-families-with-suramin-autism-trial/

https://eurekalert.org/pub_releases/2017-05/nooa-snu052217.php