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Heard this story on NPR today, and I'm encouraged by yet another link between neurological disorders, pathogens and immune response. IMHO, each and every "find" like this strengthens the rightful destiny of PANDAS/PANs as a DSMV-worthy illness that will, one day, no longer be referred to as either "controversial" or "rare." Scientists may have solved the mystery of nodding syndrome, a rare form of epilepsy that has disabled thousands of children in East Africa. The syndrome seems to be caused by the immune system's response to a parasitic worm, an international team reports in the journal Science Translational Medicine. And they think it's the same worm responsible for river blindness, an eye infection that's also found in East Africa. The finding means that current efforts to eliminate river blindness should also reduce nodding syndrome, says Avi Nath, an author of the study and chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke. But the only clue that seemed to hold up was that affected children lived in areas where river blindness was common. This clue was puzzling, though, because even though nodding syndrome is a brain disease, the parasite that causes river blindness doesn't seem to infect the brain. After returning from Uganda, Nath decided to search for an explanation. "He pulled all of the lab together as a team and asked us to each investigate different components" of the syndrome, says Tory Johnson, an assistant professor of neurology at Johns Hopkins who was working for Nath at the time. She is also an author of the new study. Johnson's assignment was to see whether the body's own immune system might play a role. So she began screening blood samples from people with nodding syndrome. Other scientists had also looked for an immune response. But Johnson's search was much more extensive. "We looked at everything that was available," she says. Johnson had discovered that in people with nodding syndrome, the immune system was targeting a protein found in certain muscle cells. It looked as if the body was attacking itself. The question was whether the immune system's attack also included the brain. So Johnson started looking to see whether the targeted protein was in brain cells. "And lo and behold she found that yes, it was not only present in the brain, there were actually large amounts of it present in neurons," Nath says. "So the story really came together very nicely." The full story, the team's hypothesis, goes like this: When a person is infected with the river blindness parasite, the immune system begins sending antibodies to attack the invader. These antibodies identify their enemy by looking for a specific protein in the parasite's cells. Unfortunately, the target protein in the parasite looks a lot like a protein found in certain brain cells. So these brain cells become unintended casualties of the body's efforts to protect itself. The discovery shows why it's important to treat children soon after they are infected with the parasite, Nath says. That might prevent an immune response that attacks the brain. And it would mean that the parasite can't be spread from person to person by black flies. Because nodding syndrome appears to be the result of an immune response, Nath says, it may be possible to limit brain damage in some children by using drugs that tone down the immune system response. The finding also raises the possibility that parasites, or other infections, are causing epilepsy in the U.S. and other countries, Nath says. "We know there are a large number of immune-mediated epilepsies," Nath says. "But the underlying cause is not clear." And there are plenty of parasitic infections in the U.S. Pinworms, for example, infect millions of children each year. It's possible that some of these infections are leading to epilepsy, Johnson says. "We don't know because we haven't looked yet." http://www.npr.org/sections/goatsandsoda/2017/02/15/515424720/scientists-may-have-solved-the-mystery-of-nodding-syndrome

I have just been told my son likely has PANDAS. I knew nothing about it. After reading quite a bit I am putting pieces together. He was given amoxicillin the same day as his MMR when he was 18 months old, for strep, I think... still checking to be certain as it may have been for massive ear infections, if which he had many. Another piece of the family auto immune puzzle is that this same time he regressed into a world of autism. Yet another, I have an adult daughter 15 years older who is on the spectrum. But here is my reason for posting: does anyone know of or has anyone heard of a documented or researched connection to autoimmunity disorders related to infections other than strep? I had recurrent TSS for 25 years and nearly died from sepsis month after month when doctors at a prestigious clinic in Phoenix dismissed it as imaginary. Fortunately, I found a great doctor. Could staph have a similar reaction as strep in people who may develop PANDAS, people who are constantly exposed to it or are carriers ?

What is the significance of a "not likely" cunningham panel. If the initial flare was over a year ago is it possible that the cunningham changes with time? My son met the clinical criteria for Pans/Panda's 1.5 years ago. Recently had the panel done with no definitive result. Any thoughts?

Any neurologists or knowledgeable doctors in the south, who will have an understanding of not only pandas / pans BUT neuroinflammation + autoimmunity in correlation with neuropsychiatric symptoms?? I'm looking for someone who will prescribe and understands ivig and pex (already done abx and antiviral). Any of the major cities like Atlanta would be great. I am searching the web and coming up empty handed besides Dr. N and a Dr. Brian Fallon in NY who's main focus is lyme. I've found some researchers, but can't seem to find treating physicians. Would prefer not to travel a far distance. Also, long term immune suppressants would be hugely detrimental to chronic fatigue syndrome. The most effective drug has been ampligen (not available for patients now) b/c it regulates the immune system and had strong anti-viral and anti infectious properties. I hear ivig works similarly and is much cheaper. Southern U.S. Thx.

I just this weekend read a book that some of you may find very interesting. I don't even know how I found it on my Nook but I am so glad that I did! The book is Brain on Fire-My Month of Madness by Susannah Cahalan. It is a memoir written by a 24 yr. old NY Post reporter, a true story, about her medical mystery which turned out to be an adult (and extreme) version of an autoimmune storm similar to PANDAS/PANS resulting in brain inflammation. Started with mild ocd and fast-forwarded into full-blown psychosis and hospitalization. Fortunately, a wonderful doctor from University of Pennsylvania found the problem after NYU Medical Center contacted him for help. IVIG and plasmapherisis and steroids saved her life just before she was totally lost. I love to read and never have enough time to but I accidentally stumbled on this and read it in less than 2 days. I am so happy to know that there are doctors out there who are recognizing the brain inflammation/autoimmune aspects. As she points out in her book, how many people have been committed to psychiatric institutions or written off as 'mental' or 'autistic', when it is actually brain inflammation? So glad I stumbled onto this book!!!!