It was about a 10 hour drive from the flat farms of Illinois into the Ozarks and beyond. I spent a lot of time reflecting on the progression of Meg’s illness and my anticipation of hearing from some of the top researchers around the world on what I believe to be the root of her symptoms and her AUTISM.  I was not going to be disappointed as they were cutting-edge topics. Luckily, a new and good friend had also decided that the microbiome research was important to her family too, and decided to attend.  Wendy Nawara (in photo on right) has three children and they each have PANDAS.  She started the IL PANDAS/PITAND/PANS Advocacy and Support group, a place on FaceBook where parents can discuss treatments and the many issues of these increasing disorders. She also was instrumental in reaching out to Governot Pat Quinn and having him proclaim Oct. 9 as PANDAS/PITAND/PANS Awareness Day in Illinois. I am a member of Wendy’s group, as a good number of us have children also with an Autism diagnosis or a combination of sibling children with PANDAS/PANS or Autism.  That may be another clue in this whole explosion of illnesses of the microbiome.  Since one of those noted researchers in Little Rock was Dr. Sue Swedo, famous now for her PANDAS studies and support of medical help for so many affected children, both Wendy and I were hopeful that the spark would take off on microbiome research and treatments.

I want to also say thank you to John C. Slattery, Clinical Research Coordinator and Dr. Richard Frye MD, PhD. Director of Autism Research of Arkansas Children’s Hospital for planning and promoting this excellent symposium, the Autism Research Program (and Clinic), and also thank the Arkansas Autism Alliance. Many of our families are hopeful about this pertinent research and would like to attend next year.   Please keep us posted.

You can see each participant and read their related bios here  as well as check back for the soon-to-be added videotaped presentations.  Some of the brief highlights that I noted and paraphrased:

Dr. Richard Frye: Man disrupted beneficial bacteria. Diseases are erupting. Mitochondrial dysfunction in Autism may in fact be connected to the dysfunction of the microbiome.

John Rodakis:  Discussed his own son, diagnosed with autism, and his improvement when on antibiotics. When he had Strep, his son on the antibiotic could ride a tricycle, (he and many of us were choked up as our kids are just so ill) because for years before that, his son was not able to ride the trike. He feels we need to understand the biology of autism. The kids can get better. There is hope. Something Man- made. In our lifetime, we need to know!

Dr. Emma Allen-Vercoe:  Breast milk is good. Babies have less colonization than years ago. Hand sanitizer may be bad, kills off too much and may affect the number and types of microbes. It may be important to look at how microbes exist and not just the numbers. C diff infections: replace the damage by fecal transplant. 90% cured of c diff. Concern for pathogens in samples. Long term unknown, so working on pure bacteria.----“Repoopulate.” , a kind of robot they made that makes gut bacteria. 

Dr. William Parker:  Helminths and rats were an integral part of his presentation but in a good way! He talked about how the microbiome has changed and helpful helminthes that used to be around have become extinct.  His lab uses indoor and also outdoor rats to examine differences in the microbiome.  From his bio: “Such differences likely explain the rising incidence of hyper-immune associated disorders such as allergy and autoimmune disease in countries with modern medical practice. Loss of particular components, including helminthes, from the human biome is likely responsible for many of the changes, and it is hoped that this situation can be reversed.”

Dr. Jim Adams and Dr. Rosa Krajmalnik-Brown: Both from Arizona State University, they discussed results from their research   on the microbiome in children with an autism diagnosis compared to neurotypical peers.  Conclusions from that paper: “…the group hypothesized the existence of distinctive features in the intestinal microflora found in autistic subjects compared to typical children. The current study confirmed these suspicions, and found that children with autism had significantly fewer types of gut bacteria, probably making them more vulnerable to pathogenic bacteria.  Autistic subjects also had significantly lower amounts of three critical bacteria, Prevotella, Coprococcus, and Veillonellaceae.”Currently, they are enrolling subjects to examine fecal transplants as a potential treatment for autism and GI issues.

Dr. Carl Cerneglia: He is Director of the Division of Microbiology, for the US Food and Drug Administration (FDA).  His presentation had a focus on the microbiome and possible effects from Man, with an emphasis on antibiotics in many of the foods consumers buy.

Dr. Tore Midtvedt: He feels there needs to be a paradigm shift and he, himself, has changed his attitude from microbe killer to microbe lover. He reported too that some bacteria can switch our genes on and off.

Dr. Derrick MacFabe: His focus has been on Propionic Acid (PPA), a fermentation by-product of a subpopulation of opportunistic enteric bacteria (i.e clostridia, desufovibrio, propionibacteria). His description of the research here:

“Examination of brain tissue from PPA treated rats (brain sections, homogenate, ToF-SIMS imaging, gene arrays) reveals an innate neuroinflammatory response (reactive astrogliosis and activated microglia, CREB activation), an increase in oxidative stress markers, reductions in cholesterol, altered phospolipid/acylcarnitine profiles, mitochondrial dysfunction and a reduction of glutathione, a broad spectrum xenobiotic detoxifier. Current studies in our laboratory are finding similar effects with systemic infusions of PPA at the post natal and adolescent times and with infusions of butyric acid, a related gut short chain fatty acid. These findings are consistent with those found in ASD patients.”

Connected to that research is the fact that many children diagnosed autistic, who are put on vancomycin, an antibiotic effective against c diff, had a significant improvement in their behavioral symptoms.  This was discovered by a mother, Ellen Bolte, who I had the privilege of meeting in Little Rock. I had learned about Ellen and her connection to that initial research on the microbiome and autism about twenty years ago, but had never met with her. Megan has had numerous c. diff infections and always improves in health and behaviors on Flagyl, a related antibiotic.

Dr. Swedo spoke after all of the researchers presented their findings.  I have to say that her slides and comments reflected some of the older research, with maybe a more skeptical view than most regarding the microbiome.  It may come with the territory of NIMH, and I say that not in disrespect but that quite possibly there are more questions than answers at this time. I also want to add that it may be that Dr. Swedo and quite possibly NIMH, have not fully accepted “regressive autism.” Again, thousands of parents, myself, included, cannot be ignored nor can the research showing these connections. I know the researchers were all meeting as a team and I do hope that Dr. Swedo’s keen interest in so many ill children will have her motivated to recommend the investment of both time and money into the microbiome research.

Two topics that came up throughout the presentations - 1) the issue of glutathione reduction and use of Tylenol and 2) the huge issue of antibiotics in our food supply as well as the pattern reported by parents of their ASD child being on antibiotics often as babies and toddlers.  Antibiotics have a profound effect on the microbiome and there are concerns that they are having a negative impact on bacterial populations.

One thing that I keep pondering, which was connected to my trip to Missouri, is mercury.  The history of mercury shows us that it was used for hundreds of years as --- an antibiotic!  I have written about this before because my family has a history of mercury exposures.  My father was a doctor, an ophthalmologist, and a surgeon from the 1940's until 1980, and the use of Thimerosal® and Wydase® was a common practice.  Both are a form of Man-made mercury and were used as a bacteriocide.  My maternal grandfather died of General Paralysis of the Insane (GPI), a disease brought on when Syphilis, a bacteria, was treated with, for example, mercuric chloride , a Man-made poison used as an antibiotic. Mark Blaxill and Dan Olmsted did an elegant job tracing the history of mercury  and the related diseases that have been caused from its different forms. There is research showing generational connections to mercury  and the microbiome may be a key.

In Missouri, I visited my parents and my grandmother’s grave.  All three had been affected by the insidious nature of mercury.  It is a beautiful and historic cemetery and while I sat there, I felt hopeful that the microbiome research will give us many answers to the puzzling pieces in front of us.  Stay tuned.

Teresa Conrick is Contributing Editor to Age of Autism.