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Wombat140

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Wombat140 last won the day on September 30 2017

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  1. 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?
  2. 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.
  3. Wombat140

    Extreme behavior

    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.
  4. Nah. I have OCD issues about SSRIs. I've actually once tried forcing myself to take it anyway, but it was a disaster. (Yes, tiny dose, 2.5 mg or something like that.) Every time I thought "Well, things seem to be OK, nothing life-ending seems to be happening", eve nthings that aren't usually a problem, I'd think "Is it really OK, or is it just the pills making me think it is?" I just becamse barely able to move with fright utnil two days had passed and I could feel fairly sure it was out of my system. Caused far more trouble than it could surely ever have solved. So probably not a good idea. Unfortunate, but there it is. (I sometimes think it picks these things deliberately.) Thanks for advice, though, and just for answer, it makes me feel better. Kind of feeling better now, with help of my mum and a random online pal. IVIg may not be as impossible as we thought, I've got a new doctor who is far more relevantly qualified/authorised than any of the people I've been making do with for the lastseveral years and seems to think it's not impossible he might be able to fix it up.
  5. Wombat140

    Not sure where to post this

    Oh God, this is me. I am also in a frenzied PANS (Or whatever the this is) flare though, so the two together is complicated.
  6. I feel awful The compuslions went all wrong and I feel awful I'm on fire I just want to scretam and I'm not allowed to anywauy What do you do Do you think there's any chancer I wwill ever feel all right again? And whay should anyone ever listen to me again, if I am all right again, and if none of this was ever important?
  7. What do you do when you know you're attention-seeking but you don't know how to stop? When something has happened that sent me into a real flap and people are pushing me away because they're in a hurry or something, I just do all kinds of random frantic loud things and I can't stop myself, it just seems to come up from my toes and I can't hold it in for more than a few seconds. This afternoon I picked up a pot of daffodils and hurled it across the garden. It feels like being expected to sit quietly and not make a fuss, although the house is on fire.
  8. What's the vitamin C supposed to do? I don't think I've heard anything about vitamin C in connection with immune system issues, or if I have it went out the other ear.
  9. Thanks Maryangela. I had that test done a few years back but can't reemebemer what it showed, I don't remember yeast being mentioned as high but then I don't remember it being mentioned at all. Might dig out the test results if I can be bothered.
  10. Ta Bobh. Well, THAT's certainly not what I've got. I did find a paper (Hare and Malone 2004) specifically about catatonia in autism, they apparently were the ones who invented the term "autistic catatonia" and suggested that the catatonia-like collections of symptoms they were seeing themselves and hearing reported by others might not be quite the same as typical catatonia, if indeed there is such a thing. They had a case study at the end that did sound exactly like me, except that it didn't go into what happened if he was interrupted in doing this. With me, I go into a state of agitated nonsense that sounds horribly like the descriptions, such as they are, of "catatonic excitement", although also quite like what people on here describe as "PANDAS rage", although from the inside I wouldn't describe it as rage, but people have informed me that I'm wrong about that. Catatonia seems a bit of a mess frankly, they can't even decide whether these symptoms the autistic kids have represent a movement disorder (like Parkinson's) or an extreme fear response. I may be iggnerant but couldn't they get a clue to that one by using a pulse monitor, for one thing? (I mean, with those subjects who will put up with wearing one).
  11. Thanks for your input Maryangela, this seems almost impossible to get anywhere with at the moment, so it's good to know that if the medical side is resolved it can make it a lot easier! Very pleased to hear that life has got so much easier for you and your son. Veering slightly off-topic, but how did you find out that yeast was a problem? Was it just because you happened to try, for instance, that Saccharomyces stuff and it worked?
  12. OK, thanks. What happened? I mean, was he put on or already on psychiatric medication, or did it resolve without that? (And what were they like? Otherwise I don't know whether it's like mine or not - there are so many symptoms listed for catatonia that lots of different things could look "a bit like it".) Sorry, would mean a lot if you could clarify.
  13. Wombat140

    Adult with untreated PANDAS?

    Hello Sascha, how are you doing now? Have you had any success getting the other tests that Dr K wanted? I am in the UK and I do know of two labs in London that do many of the type of tests involved with PANS: http://www.biolab.co.uk/ and https://tdlpathology.com/. I can't remember whether they offer the specific tests you mentioned but I think it's likely they have at least some of them. There are lists on their websites. How it works is you send them the appropriate type of blood samples by post and they analyse it and send you the results. So if your doctor would agree to draw the blood for you, they could do the testing and then send the results to Dr K for him to look at. I think that a lab in England should be close enough to you that the blood should still be fresh enough when it gets to them. Ask them first, of course. But Armin in Germany were happy to test my blood (for Lyme disease), so it seems reasonable that Biolab could do yours! :-) I agree with MomWithOCDSon, definitely show your local doctors Dr K's letter, or get him to write to them. They might be more interested if you prove that a real doctor is asking. Good luck! Let us know how you get on. Oh, and I made this thread a long time ago about treatment options outside the USA, there might be something useful to you there that I've forgotten or you might want to add something you've found to it yourself: https://latitudes.org/forums/topic/24626-treatment-options-in-britain-outside-america/
  14. Wombat140

    Anti- inflammatories

    Rlz already mentioned curcumin. Any luck, Rlz? I'm wondering too. Curcumin doesn't seem to do it for me, we've tried both a proprietary extract (Pure Encapsulations) and just turmeric powder stewed up with butter and pepper. Ibuprofen does seem to do me some good, but I can't tolerate that daily for more than two weeks at a time (stomach). Practitioner wanted to prescribe Celebrex (celecoxib) but I'm hesitant, not clear how safe it's currently thought to be and does it work (for PANS)?
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