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Everything posted by Sternjs

  1. Despite 15 months worth of antibiotics (mostly doxy and biaxin) our 12 year old dd has had high myco numbers for well over a year now. She is being treated with the assumption that she has an autoimmune encepalopathy (our doc does not seem to like using the term PANS.) After being out of school for all of 2014-15 she actually made it through full days in September and October of 2015 before things began to get worse again. She is now back on home bound instruction and while not as intense many of the original behavioral symptoms have returned. Though she has tested positive for Strep, Lyme
  2. Our 11 year old dd has been out of school all year. Almost a year in, she remains positive for Lyme, Strep (asymptomatic), Mycoplasma, Coxsackie, and HHV6 along with a highly elevated IgM though she has been thoroughly tested for allergies all of which are negative. All this despite 6 months worth of everything from Ceftin to Biaxin, to Doxycilin, to Levaquin and other antibiotics as well as a small store;'s worth of supplements and homeopathic support.. She has been diagnosed with encephalopathy caused by an autoimmune response to the various antibodies. We have seen Dr T and are now with
  3. I'm hoping some of you can weigh in on this. Our 11 year old dd was first diagnosed in Oct 2014 following sudden and severe onset of separation anxiety and mild ticing. She has been on home tutoring the entire school year as we wait for her symptoms to improve. Initially the only positive test was for mycoplasma but as we visited additional docs and had more testing other issues emerged. Dr Ts testing revealed high Coxsakie B IgG titres and high IgE titres. Follow up testing revealed no allergies or parasites, the typical cause of elevated IgE. After 2 months of Zithromax, 1 month of Bia
  4. Thanks for all the comments and suggestions. Our biggest issue right now is simply dealing with school and tutoring. My wife and I are both teachers so we certainly get the importance of academics but her school refusal is so severe there is just no way of getting her to go. At this point it looks like she could lose an entire year...as she was one of the youngest in her grade maybe that would be for the best. Has anyone had such extreme school issues?
  5. Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing
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