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Dear All, I don't really have much of a purpose writing this post other than to describe to you the devastating repercussions and consequences that life a side has thrown me whilst being 'locked in' to this illness. Here in the UK, I'm a struggling university student currently on medical leave - the responsibility, time, planning and organisation of placement and finance is a huge burden for all, let alone for someone severely incapacitated. My story follows a familiar relapse/ remitting course of illness for several years. For the best part of 8 months I've been walking around in hazy fog totally unable to organise my thoughts, my short term memory is shot and I've had much difficulty in general functioning full stop. The worst part of this illness is the ignorance and lack of support I've received from my own family, who have expected me to 'just picks things up'. It may appear to some from an outside perspective that I'm simply dealing with a clear case of munchausen, but pure isolation coupled with blasé style of wilful ignorance has kept me battering on to my parents for the help I feel I need. Time is precious and flies by very quickly, the new academic year is upon me, and I'm still entirely dysfunctional. I realise that yet again, I will have to postpone my return to everyday functional life and the chance to succeed in education. I've exhausted all available help from the NHS, and now my fate really does lie in the hands of Dr K and the financial resources of my parents - they simply have no due care for the symptoms I've displayed for many years, and are finding anyway possible to refute or brush off a claim of PANS/PANDAS. Usually, I can organise myself and everything I've done or achieved has been entirely self directed. I've had contact with a prominent neurologist in London, who after receiving Dr K's letter did acknowledge the possibility of a historical picture of pandas, but made it clear that any treatment protocols were restricted to use in children - he doesn't treat adults because of the 'lack of research'. My last hope is truly in Dr K, being totally friendless, having no girlfriend and my mind being on the rocks, I have no idea how I'm going to turn my life around for the 'umpteenth time'. He returns from vacation tomorrow, my parents have agreed to speak to him but are very reluctant to entertain the idea of going the extra mile despite all the suffering. What do I do? How am I going to turn this around and restore all previous function? I understand we are all strangers to each other, and that us guys are selectively few and far between in the everyday world. I just feel so lost, with no clear idea as to whether I will 'suddenly' get better this time. My ability to concentrate and organise myself is abysmal, my ability to speak fluently has just returned. And to be fair I'm no one should have to go through the terrifying or deal I have... I guess as the great man once said "The world is a dangerous place to live, not because of evil people, but because of the people who don't do anything about it..." Afterall, ignorance is always the true killer. Thank you guys for supporting me these last few weeks, it's kindly appreciated. I just wish the real world was the same, I long to return to my former self.

Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped. But I can offer this observation. My DS's primary PANDAS presentation was OCD. When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description. He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him. Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality. He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him. Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again. But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior. I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior? I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves. Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with. I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis. So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose? Chances are there's some inflammation in the mix, at a minimum. I say go for it! All the best to you.

Like Jan251, I believe that if you look at the clinical diagnostic criteria for PANDAS or PANs, tics are included but not exclusive or required. That said, I think sometimes it can be difficult to distinguish what constitutes a "tic," particularly if it fails to take a classic form (head-jerking, etc.). My DS had an OCD diagnosis for years prior to a PANDAS diagnosis, so we had a "pre-programmed" awareness of all things that took the form, to our eyes, anyway, of obsessions and compulsions. But, frankly, it took discussions on this forum for me to realize that his tongue-clicking and his leg-dragging were also tics driven by the PANDAs inflammation. Frankly, I would think that any manifestation of a movement disorder -- assuming no other diagnosis or perhaps even attributable to some other diagnosis, since many technical diagnoses are really just a label assigned to a symptom set, but not an identification of the underlying cause -- could be a PANDAS/PANs symptom.