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Hitman -- I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported. You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources. It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally." I can say, "Hang in there!" I can say, things WILL get better. But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality. I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find. I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress? I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out: OTC anti-inflammatories, like ibuprofen vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc. an anti-inflammatory diet probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK) exercise and/or meditation therapy I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality. Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy. All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy. But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness: reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening? Reclaim little pieces of your life, if you can, however small. And then celebrate that return to some functionality, however brief or small a glimpse. That'll give you something to build onto. And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment. I know it's a lot to ask of yourself. Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents. But he still had demands made upon him, and we still set some expectations. Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents. We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself. Not fair. Far from easy. But you can do it! I know you can! Wishing you all the best, and a giant, fighting spirit!