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puzzledguy last won the day on February 15 2018

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  1. Unfortunately the only one anywhere near me is Dr. Aureen Pinto-Wagner, and it seems she doesn't do anything with immunology or the other physiological aspects of PANS. I already have a psychologist and a psychiatrist in Durham, what I need is help with getting to the bottom of gut/food sensitivities. I will contact her anyway, in case she knows of any support groups for people with biomedical in addition to psychological issues, but I'm not too hopeful.
  2. I'm a student at Duke, living on my own. My parents have completely given up on my health and dropped out of the picture--I'm all alone and really need other flesh-and-blood faces to meet with and get support from. Just reading about research online is no substitute for actual friends who understand.
  3. I've just started this blog. Feel free to follow it, and please pass it on to your adult children with PANS/PANDAS/Lyme! https://twiceapart.wordpress.com/
  4. Thanks very much MomWithOCDSon. It would be GREAT if the Duke medical center were able to address this--I'll be living within at most a 5-minute drive of the on-campus hospital, if I'm not within walking distance of it. Who there is helpful with getting assessed for these kind of health issues?
  5. Hello, I will be starting at Duke this fall as a graduate student. I'm in a bit of a crisis since it will be a long move (all the way from northern California) and I will be away from parents for the first time in a long time. I have chronic health problems, and I'm beginning to suspect I might have PANDAS. I know I had Lyme in the past, but I finished treatment for that. I am desperately looking for some sort of support from people in the Triangle area who I can meet with who understand chronic illnesses and can possibly help me get tested and treated, or at the very least just be suppor
  6. No, it's never triggered by anything external, always internal--drugs, sleep deprivation, prolonged anxiety, and sometimes just random chance. Thanks for the link, but trigeminal neuralgia doesn't sound like it at all. The pain never radiates to points on the surface of my head. In fact, in many ways calling it a "headache" is a misnomer, because it isn't like a typical headache (including the stress-type, pounding sort of headache). The closest thing my pre-Lyme self would have been able to compare it to is the achy stiff neck that sometimes accompanies a bad case of the flu. I've heard t
  7. Hi, I have posted one other thread, about a particularly perplexing form of headache. Well, I wanted to elaborate more, and ask for other people's stories. For several years I have been having that strange headache, which involves a flulike sort of neck tension and a sort of electrical/"zappy" feeling in my head. Various things could bring it on, from too much caffeine to sleep deprivation to just a general flare-up in my symptoms. I was diagnosed with Lyme in 2002, and treated with about 6 years of antibiotics, but peripheral neuropathy and some nonspecific mood symptoms like irritabi
  8. I will only respond to this, for others who may be thinking of the same thing. While I respect your suggestion, I'm looking specifically if there are people who have had these kind of strange headaches, and whether they are typical for Lyme. Anyway, to respond to the quote, I am also at the high functioning end of the autism spectrum, and as with others in that position, I have had this I had as long as I can remember. However, until several years after I had developed "full blown" Lyme (which itself was when I was 16), I NEVER had this sort of headache, and even the peripheral neuropathy
  9. I had Lyme disease for many years. While I was diagnosed in 2002, I had sporadic knee swelling as early as 1996. I was treated with 5+ years of antibiotics (yes, I managed to find a LLMD), and improved substantially, though I still had a ways to go. I quit the antibiotics, went on antifungals and probiotics for a while, and various supplements, which made me improve generally. Most persistent, however, have been neurological/brain symptoms. In particular, peripheral neuropathy, irritability, and possibly some depression. The neuropathy has improved (and continues to improve to this day--WO
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