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Wombat140

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  1. 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.
  2. 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.
  3. 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 get to speak to any of them before we leave for Grasmere, but maybe they'd be prepared to speak over the phone and then send over the prescription for us to get cashed at the pharmacy there. Perhaps that'd be a thing that she'd be more prepared to prescribe without a blood test. It's infuriating because I get the impresssion, though I'm not sure, that what my GP is thinking is not so much "I don't want to prescribe this until I've seen the blood test" as "I don't want to go on just prescribing things at hazard without bothering to do blood tests, I want the blood tests to be done". Whereas, for both the reasons mentioned, the blood tests just ARE NOT GOING to get done for a bit, insisting is not going to change that, so just leaving me without any treatment until then is just a bit useless.
  4. 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 prescribe for adults) are dragging their feet about prescribing any more Augmentin without a blood test. (Which can't be arranged in that short a time, and anyway if the symptoms continue as they are it's going to be very unlikely that they'll be able to GET a blood sample UNTIL I've had the antibiotics.) So in about a week we're all going to be in a hole.
  5. 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 the small sample size (35 patients). They also drop intriguing hints, saying that they'd like to try to develop tests for who would respond to IVIg, implying that some responded much better than others. Pity there isn't a full-text version availiable, I'd have liked to see more details of what they meant by quite a lot of things - and also what the pattern of individual responses was, not just the average: was it really just a small effect for all the patients, or was it that some had a large improvement and others none (because they didn't have whatever underlying immune status the IVIg is supposed to be repairing)?
  6. 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.
  7. 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.
  8. 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?
  9. 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?
  10. 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.
  11. 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!
  12. 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!
  13. Everything is connected, but not that connected.
  14. 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?
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