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Everything posted by Wombat140

  1. Encephalitis means specifically inflammation of the brain, not other parts of the body. But you're right - it's pretty much the same condition, Streptococcus pyogenes infection followed by the immune system attacking particular parts of the patient's own body after mistaking them for more streptococcus germs. (Just to confuse the issue, there's already a sub-category of rheumatic fever for effects in the brain, Sydenham's chorea aka St. Vitus's dance, but it's a different part of the brain producing different distinctive symptoms. Perhaps one day PANDAS will get reclassified as a subgroup of rheumatic fever too.) So it seems possible that what's going on there is an inflammation in one of the rheumatic fever places as well as the PANDAS place, and it's suggestive that you've had both conditions. (My grandmother had rheumatic fever, too.) I suppose it'd be for a doctor to say whether Garden's daughters' symptoms really are the same as the joint pains in rheumatic fever.
  2. I'm also hyperflexible/hypermobile, whatever you want to call it. It's odd, isn't it, how often that seems to go along with PANS and/or Asperger's syndrome? Anyway, that probably explains how a few days ago, while panicking, I managed to bite myself very hard in the leg above the knee. It's come up in the most magnificent green and purple bruise. Life has its little compensations, doesn't it?
  3. There's a new study by Susan Swedo, suggesting that IVIg doesn't work very well, or something like that. What do people think? I know some people on here have observed that it seems to work for their child. Our doctor seems to have possibly changed his mind and is saying that he doesn't think there's any point in recommending me for IVIg after all. I don't know whether it has anything to do with the study or not. Also, he wants to put me on antibiotics for a month (didn't specify what antibiotics) and seemed to be implying that if we didn't see any effects from that, then it probably wasn't PANS. Is this really correct, in an adult who's had the symptoms for 15 years?
  4. I'm afraid I really cna't remember - I don't seem to have made a note. I rather think I went down to 1 a day rather than stopping altogether and it clered up (back to where it was before I started taking them, maybe) on that, but I'm not sure. I'm not taking them any more because they didn't seem to be doing any good.
  5. Any luck finding out about this? If not, you might have to try posting in the Tourette's or PANS forums, even though it's not really the right topic for it, as people tend not to look at this one. (Or post there just giving a link to this thread and saying to answer there.) I'm afraid I don't know myself or I'd tell you!
  6. Just an update to say as far as I can remember, things did get better eventually after cutting the dose, over maybe two or three weeks. Thank you everybody for the information!
  7. Everything is connected, but not that connected.
  8. Yes. I almost lost my mind. (I'm talking abuot "Brain Lock", I haven't heard of one called "You Are Not Your Brain" before and I thought I'd heard of all the OCD books by now! If it's another one by Jeffrey Schwartz, though, I might give it a miss - no offence.) No offence, but why are you asking that in this thread? Shouldn't it have its own thread, really, let alone a thread about the duration of action of ibuprofen not being a very sensible place for it, just because that thread like almost every other thread on here mentions OCD?
  9. I'd like to say, just for my own encouragement, that I'd rather the things I was worried about were also actually not true, as well as just me not being anxious about them. Thanks very much for your encouragement, really.
  10. Sorry to get into such a paddy. It's not that I was haing a bad reaction to the ibuprofen, more that I was panicking about the ibuprofen. Panicking about your mind having been compromised is a bugger, because even if you come up with an argument that you think is convincing, you thenwonder whether it really is a valid or convincing argument or whether it's just the drugs making you think so! You're probably surprised at me, who frequently reels stuff off like a chemistry textbook, suddenly appearing not to know whether ibuprofen has a limited duration of action or not. The fact is, when I get into that state, there's no use me telling myself anything at all, because I won;t believe me. I didn't admit I was in a state before, I know, I'm sorry, I was just afraid that if you thought this was an "OCD question" you'd treat it as an "OCD question" rather than giving me a true answer. Now I'm not bothered because Iknow even if the ibuprofen is making me believe something that isn't true, I'll be able to find out sooner or later. I do feel a bit better now, though I'm not sure whether that's the ibuprofen or the 1000mg of Vitamin C that I took at the same time (haven't been able to get at either of them for ages, owing to OCDorwhateveryoucallit issuse) - less as if I'm liable to crumble and fall to bits at any time, and the worst of the continual burning sensation has cleared up.
  11. One PANDAS specialist I saw a few years ago (Dr Goyal, no longer practising as far as I can find out) did say that hypermobility/type three EDS was associated with PANDAS (he said I had it). He said it was because the collagen fibres in the tissue were looser so antibodies could get further in. But then a book I read about mould sensitivtyu (one of Dr Shoemaker's, can' t remember title) claimed that EDS was often a SYMPTOM of mould senicstiy and cleared up if that was cured. IssSo I donm't know, but more than one person seems to have noticed the correlation.
  12. I don't logically know ANYTHING. What's the answer to the question I was asking?
  13. Well, the effect effect. Whatever effect/s you're supposed to be taking it for, that supposedly makes you think quite differently about everything and think things are OK that you wouldn't otherwise. Thank you so much for listening. Any answer? From you or anyone else.
  14. Do the effects of ibuprofen ever wear off, and, if so, how long does it take? I'm in one of my panics about not knowing whether anything I think, want, believe or feel is real or just the effect of something I've taken. It's a bit of an impossible thing to avoid when everything you live surrounded by is a question of what would be most effective in making you think differently about something. Damn PANS and damn all medical treatment. Damn, damn both of them. Anyway. I could do with a reply to this AS SOON AS POSSIBLE PLEASE.
  15. Replying in no particular order: I don't have Facebook. I'm in Britain, Culturelle isn't sold here unless I ordered it off Amazon or somewhere, and that'd be a long wait and is there any reason to think that would be better, if it's oznly that it doesn't have s. Thermophulus, which this doesn't either? I know about Strep thermophilus but it's not there; Pro-Kids contains only four strains - Bifidobacterium infantis, Bifidobacterium lactis, and two kinds of Lactobacillus but I forget which (haven't got the bottle handy). No, no constipation, in fact these probiotics have given me the runs a bit. That leaves the yeast - no idea, it could be, I suppose. I forget what the symptoms of candida are supposed to be, except the obvious physical ones (the cracked skin, itching and red bits), which I don't have any of. I'm nervous of taking antifungals on top of all this thouguhy in case I make things still wrose! Surely if the problem is the candida dying off, takking antifungals would just mean even more die-off, wouldn't it? Or wouldn't it?
  16. I've been doing searches and found a few posts but not very clear so I thought I'd ask again. I started taking the Hyperbiotics Pro-Kids probiotic on Thursday (yes, I know I'm maybe a bit old for that but it was because Lordchallen's daughter was taking it for *ahem* very similar symptoms). I took 2 a day to start with, that's 6 billion Colony Forming Units, then nothing seemed to be happening and things are already quite bad so I was impatient for something to wrok, so yesterday and today I took 4, that's 12 billion CFU. Written down like that it does look rather a lot. Yesterday and today, things have been particularly dramatic, in the exact same way I was supposed to be taking these things for - insane frustration at the least thing, agitation, panic, OCD getting set off catastrophically at the least thing, lengthy ranting at my parents. Mum describes me as "hyper" whatever exactly she means by that. Query. Have any of you or your kinds got worse on probiotics? And, if so, was it a worse-before-it-gets-better thing, or was it actually just worse and the correct thing to do was stop? And which ones (what species of bacteria were in them)? Please, it would be a great help if any of you could put me in the picture.
  17. I used to know a lot about this (since it's one of the many things on here that appears to describe my symptoms. I think some form of PANS is behind it all with me though). This is the original article that I think coined the term:       Tic or Compulsion? It’s “Tourettic OCD”  By CS Mansueto and DJ Keuler. It's a journal paper but is very readable. It's from 2006, though, so it mught be worth doing a Web serarch to see what's comeup since then. Oh, and here's the thread I started when I was trying to find out about it, in case there's any information there that you haven't seen. https://latitudes.org/forums/topic/7179-i-think-i-have-tourettic-ocd/ Good luck.
  18. Thanks both of you. I tried NAC once, years ago, and things seemed to get worse - though I don't remember how much I was taking. LNN (formerly LMM) has a theory that people who have a mutation in the CBS sulphur-processing gene are the ones who don't respond well to NAC, which contains a lot of sulphur - and I know I do have that, at halest half a one (+/-) New doctor's put me on daily ibuprofen yet again, which is a relief - I never like to start that on my own initiative because after a while I always start to get stomach bleeding and I don't know how long it should take to recover after that, but honestly I was already considering it by then, things were just so sticky. I'm already taking a multi (Holistic Health All-in-One), but I haven't been on high dose B6 for ages, actually, maybe I should get some of that, I used to like that stuff. When you say magnesium, Mary Angela, d oyou mean magnesium and calcium, or magnesium alone?
  19. Sorry to butt into Eatmoregreens and Newfie's thread, but @bobh what do you mean by "dcotors in London"? Anybody I ought to know about? Always on the lookout for more UK doctors to add to my mental list.
  20. Which probiotic is your daughter taking, then - Pro-Kids or Pro-15? I looked them up and it turns out they're not the same strains after all (15 combines, unsurprisingly, 15 different strains, while Kids has only 4), so I'd better know.
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