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Everything posted by Wombat140

  1. 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.
  2. Wombat140

    Anyone got worse on probiotics?

    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?
  3. Wombat140

    Touretic OCD

    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.
  4. A lot of the time awful things happen to me and my family that I can't talk to anyone about because I can't think of anyone else I could possibly explain them to. (One's happened just now.) Is it OK tto rant in the main forum? Or would you rather people didn't? Wombat140 Edit: By the way other people are welcome to use this thread for this kind of thing too, if that helps.
  5. 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?
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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?
  11. 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.
  12. 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.
  13. 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.
  14. PLEASE READ - Important: please read this posting before replying to anything I post: http://latitudes.org/forums/index.php?showtopic=24834#entry186170 This posting indicates what the main word is that I have a problem with, but please don't say it to me by way of exposure; I can't cope with that, especially as my reaction to things is always worse if I've specifically asked someone not to do them. I do really need to be able to use this forum. I have a weird OCD(?) issue which is a horror of a particular word. Or rather, several words, it's been spreading. I'm going to talk about the oldest and most poisonous one, but much the same could be said of all the others. It's taking over at the moment - running wild and poisoning everything; I don't know how to deal with it and I really need help. It's not exactly that I'm afraid of it (though I know that it's usual with OCD to insist on making the patient admit that their issue is in fact straightforward "anxiety" exactly like everyone else's, and I'm not going to argue). It's that it seems to me utterly disgusting and dehumanising, or rather to indicate something that is. So, yes, I am afraid of it, in that it's not surprising to be afraid at the prospect of something that seems so horrible to you. But I don't think that's really the point. Anyway, I think whether I'm basically disgusted or frightened probably isn't really the point, either. Just mentioning it in case it was. The weird thing is that it's a word that most people would consider a nice word or at least neutral, and presumably so did I before all this started. That's the trouble, in fact - things that are OK in themselves can be described by that word, and because that word has horrible associations and evokes horrible feelings, that then makes the things seem horrible too by definition. People have suggested that it's a conditioned-response thing - perhaps it got associated with some bad experience that happened to me, and grew from there. That does seem very likely to me, it fits the way it behaves, though I don't actually remember any such incident. Anyway, the point is: I don't know how to tackle it. Has anyone else dealt with a reaction to a word, and, if so, what things did you do? Being a word seems to make ordinary exposure very difficult. The trouble is, words are MEANT to work by association. It's associated in my mind with horrible feelings, ideas and images. So if I write it down, say, or read it, I think, "yes, there is a word that means something terrible". To the extent that I can't even stand to read it or have the thought of t in my head without dloing something to "shake it off". And if I don't shake it off, if I allow my brain to carry on saying that something is "[word]", then I feel slimy and horrible and as if it's physically clingin all over me and touching me with long, jeering fingers (If you see what I mean by jeering fingers... ), and it gets worse and worse until I can't bear it or think straight any longer and give in and do a compulsion, usually a worse one than before. And it makes it very difficult even to think clearly about why something isn't in fact a horrible thing that I should rationally be avoiding: my mind just keeps going, "But it is [word]! You can't deny that it's [word]! Anyone would say so!" but then with that word come all the meanings I associate with it, which do not in fact apply to the thing in question at all, but I become unable to see it as anything else. How can I get this word (and all the others) away from the associations? I've tried a few things, some of which make me think more clearly for a bit, but I don't seem to be getting anywhere. And I don't know whether that's because I'm going about it wrong, or because I'm not doing enough of it, or just because my brain is short-circuiting too badly to keep up (I'm currently in the early stages of treatment for Lyme isease, to no evident effect so far). Please help if you can. Anything, however small. I'm going crazy. It's my birthday tomorrow, so any little nugget of advice would be a really nice present!
  15. 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).
  16. Have any of you or your children ever been diagnosed with "Autistic Catatonia"? If so, what happened about it? Did it get worse until treated, as some of the websites I've seen suggest it inevitably will? What (briefly) were the symptoms? And, most importantly, did it resolve with treatment for PANS or whatever, without needing any other conventional treatment? I'd very much like to know, and quickly if possible, because my psychologist thinks I might have it and has referred me to someone for a diagnosis. After looking into it, I think some of the (rather cryptic) symptoms do sound like me, particularly when one of my OCD rules has been irretrievably blown, but it seems that the officially recognised treatment is high-dose benzos or ECT, which I'm not thrilled about! Many thanks, Wombat140 (NB I'm 27 and have been ill since I was 13, and several people over the years have diagnosed PANS of some sort, though I've never really testedc positive for anything. Doing any very through treatment for it has been obstructed by various factors - can't find experienced enough doctyor who's close enough to see in person rather than long-distance, various things cannot be authorised unless the doctor has seen me in person, etc - but just now we think we may be on the trail of a more suitable doctor so hopefully there may be a prospect of having a more thorough look at the PANS possibilities.)
  17. 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?
  18. 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.
  19. 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/
  20. 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)?
  21. Hi Patmom, how's it going? Any progress? I do hope your daughter gets better soon.
  22. Wombat140

    Extreme behavior

    Hey, that description sounds exactly like what I do sometimes when some part of my OCD has been blown and people are brushing me off. I'd been meaning to ask if anyone could tell me exactly what the legendary "PANDA rages" actually looked like, so I could see whether that's what's happening. Thanks Lordchallen. You feel like something is very wrong and/or you've been terribly betrayed or insulted, and want somebody to do something to fix it or at least do something to make up for it, but you do not know how, or how to get their attention or get it across to them what you need, for that matter you may not exactly know what you need; sometimes it's because you're too agitated to be able to think clearly and you won't be able to work out what it is you really need until the agitation begins to subside from sheer exhaustion. (For that matter, you might be too agitated to recognise it if you did get it. Often all I really want is a hug or for someone to say sorry, but while I'm at top volume, it doesn't really mean anything to me even if they do.) So all you can do is shout incoherently for you know not what, and the more people tell you to stop it and be quiet, the louder you shout. This may just be the ravings of a PANDA, but sometimes I actually feel like I'm not so much waiting for me to settle down, or not just that, but more waiting for my parents to settle down! What I need more than anything else is some sign of sympathy and to feel that there's somebody who will try to help me, but because I started by shouting, there's no chance of that. The only thing that sometimes works is to back off, if I can manage it, grit my teeth and go hide somewhere for a few minutes to give people time to recover a bit and think, then come back and burst into tears straight away - or at least make the most crying-like noise I can manage, since my eyes won't cry while I feel like I'm at war, it's only when I think I catch a faint scent of a hug in th e distance that it lets the tears escape. Oh dear, writing it like that makes mje feel bad about being so icily manipulative as I seem to be revealed to be - but merely continuing the screaming match for another hour isn't really any better, is it? Maryangela, your son's therapist sounds like a noodle. I feel for the poor kid - and for you; that's exactly what would have happened with me in the circumstances, too! :-D Surely someone who does behavioural therapy for a living ought to be able to recognise what a compulsion is and what happens if you do that to it? Perhaps she couldn't see from where she was standing that he was doing repetitions rather than simply carrying on playing, but surely you told her. Ah well, sounds like you've given her her marching orders now, anyway!
  23. Hiya (digging this up for no discernible reason, I'm just working through a lot of old e-mails because I'm angry). Well, thanks, basically. Thanks for being understanding. You know how it is with PANS... problems that wouldn't even make sense to anyone else. Not now, I can manage right now, I think, but I probably will rant at some point, now I've remembered the idea! :-D
  24. Thank you, this news encouraged me a whole lot! In return I'd just like to say something about what you said: What's really made me see this myself is the migraines I get every now and again. (When I was twelve they used to be every two weeks regular as clockwork, but now they're much less often.) The first stage is that I start to feel just generally awful, yet without any really that drastic symptoms. Sometimes there are NO detectable symptoms at all in which case I may not realise what's going on. I'll feel sure that I'm seriously ill. I'll think what on Earth is wrong with me? Am I finaly collapsing from the strain of everything I put myself through with the OCD, or what is it? Then I get a definite headache and then I'm sick. After that, I'm usually fine, unless it decides to repeat the headache and feeling sick stages again - I try to get to bed before that happens. When I get to the feeling sick stage, if I hadn't realised what was the matter before, I laugh and think, "Oh, so THAT's what was going on!" My point is, severe depression and hypochondria, headache, vomiting. How's that for a set of symptoms? YES, being ill, no euphemisms about it, straightforward "aw do you want a hot drink?" ill, can very easily do this to you. Stick that in your Oedipus complex and smoke it.