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Wombat140

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Everything posted by Wombat140

  1. I need to ask a very awkward question by PM. Is there anyone who'll let me PM them, who is familiar with PANS and in particular understands what the phenomenon of "invisible walls" (as in "Saving Sammy") is? Somebody I've spoken to before would be preferable, but whatever I can get.
  2. Whew, thanks for the warning about Diflucan! The NHS webpage does mention oral antifungals being used for that as if it was a normal thing. It also says that "one dose of medicine should be sufficient". I'll bear Saccharomyces boulardii in mind, and the grapefruit seed extract. Is there any risk of PANS herxing with grapefruit seed extract, do you think? I mean, from whatever else it is I've got, in case it turns out to respond to grapefruit seed extract when it doesn't to antibiotics?
  3. My mum seems to have acquired the idea that oral antifungals are considered dangerous and are only prescribed when there's no alternative, and it would have to be a - refuse to even say the word - or go without any treatment and also that it will never get better by itself. I have such enormous issues about this that I think if I did that that'd be the rest of the summer spent recovering from the trauma, and I know me, I don't recover from trauma by sitting quietly sobbing in corners but by constantly buttonholing my mum or dad, asking frenziedly if anyone will ever be able to bring themselve
  4. My mum has a magic method for injections and blood tests. She digs her thumbnail (of the other hand) into her finger, which hurts, but she's doing that herself so she can do it - it's like trying to tickle yourself, that doesn't work either - and since it hurts you can't help but pay attention to it, and therefore can't pay attention, or not as much, to the fact that a needle is about to be stuck in your other arm. Using this method I had all the blood drawn successfully last Tuesday in under 20 minutes - beating my previous record by at least 10 minutes. Well, that and singing "Castle" by
  5. Once I've put my head on the pillow at night, I daren't lift it again or it'll be a lot of trouble getting it back on it again, to say the least. Well, but then the other night I realised that I still had a glass of milk I hadn't drunk and I wanted to drink it. So I tried to very carefully drink it lying down. This is how I managed to pour milk up my own nose. Such is life.
  6. I really don't think that it's possible that any of these patch things affect the brain. I should jolly well hope not, anyway. I looked up Synera and it is just lidocaine and another thing of the same class whose exact name I've forgotten, like any other topical thing. I think you must have got a bit confused. Update on my own position: she has prescribed some more now. My symptoms have gone completely back to where they were before over the three weeks without antibiotics, but I'm hoping they will eventually go away now I can take them again. Blood test being arranged.
  7. Did you see the "oddball symptoms" thread a bit further down this forum? That talks about that. A lot of people seem to suspect a connection. I'll also point out that low muscle tone and general double-jointedness seems to be very common in people with Asperger's syndrome as well, although I'm not sure if it usually goes as far as that shoulder-snapping thing you described. Of course, Asperger's isn't at all the same thing as PANS, but they do go together disproportionately often, so a correlation in one would mean some amount of correlation in the other too, if you see what I mean.
  8. Ahhh - that would have worked but unfortunately naproxen is a prescription medicine in this country! So close but so far! I'll bear it in mind, though, perhaps it'll be useful some time in the future. Do you mean to say it worked noticeably better than ibuprofen? (I do take ibuprofen some of the time, in fact much more of the time than I should, I'm sure you shouldn't continue to take it several times a day for weeks and months on end, but it doesn't entirely seem to cut it.) Or maybe they might even be prepared to prescribe that - it's not going to be possible, by the look of it, to
  9. Is there any reasonably safe way of obtaining Augmentin without prescription (like I seem to remember people have talked about getting azithromycin via veterinary suppliers, although I can't now find where it said that)? I doubt it, but just throwing that out there. We're going on holiday in a week, for two weeks, and my symptoms improved quite noticeably in the last week or so of the course of Augmentin I've just finished but are now going downhill again, and my GPs (who do the prescribing because the PANS specialist is a paediatrician and therefore, bizarrely, isn't allowed to prescri
  10. Sorry for the delayed reply. I've done a little looking up and rather than the 2015 study with Dr K mentioned by Albymom, I think this may be the one my mum had in mind: Randomized, Controlled Trial of Intravenous Immunoglobulin for Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (Williams, Swedo et al., 2016). The gist doesn't, in fact, seem to be that it didn't work, but rather that there was quite a decent improvement (average 24% improvement versus 12% on placebo) but the difference between IVIg and placebo wasn't statistically significant with th
  11. Four o' clock in the morning is actually a very good time to go to bed. If you happen to be up then, it's a good idea to go to bed then.
  12. 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 o
  13. 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?
  14. 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
  15. 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.
  16. 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!
  17. 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!
  18. Everything is connected, but not that connected.
  19. 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?
  20. 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.
  21. 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
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