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Wombat140

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Wombat140 last won the day on September 30 2017

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  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.
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