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Showing results for tags 'Autoimmune'.
Found 4 results
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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 ?
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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?
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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.
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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!!!!
