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Wombat140

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Everything posted by Wombat140

  1. What the title said. Instructions call for one cup of each, local pharmacy and supermarket (respectively) sell them in little 100g tubs which obviously isn't ideal. Any more cost-effective way of gettint them I don't know about? NB am in UK if relevant.
  2. Wombat140

    PANDAS doctors in the UK?

    Ta v much have you got the "Your Child has Changed" booklet from this site, if not, get it and also print a copy to show the GP and leave with them, that's what we did, it's a good summary of the whole thing and what the treatment/testing options are for a GP who hasn't encoutered PANS before; it's a good ten quid's worth.
  3. Does anyone know of a doctor in the UK who knows anything at all about testing for and treating PANDAS? It would have to be in the north of England, actually, because with my symptoms the way they are, it would be impossible for me to stay the night anywhere and very difficult to use the train. Anywhere within 100 miles of Rochdale we could manage if we had to - as far as the Midlands or the Scottish border, and certainly anywhere in Lancashire, Yorkshire, Nottingham etc. I've written and asked a few PANDAS doctors (too far away themselves) if they know anybody, but I'm afraid I won't get an answer - I didn't with the last batch of people I wrote to. So if any of you do know anyone, I'd be very grateful. Many thanks Wombat140
  4. Wombat140

    PANDAS doctors in the UK?

    Nope. Or rather, we did find one, Daniel Goyal, but he's closed his clinic since then. I didn't get anywhere o his treatmnts, but we may have been barking up the wrong tree - we hadn't managed to get testing done at the tome owing t needle phobia, we've managed to have it done rececnet and it seems as is if it may be :Lyme dises rather than, or as well as, PANDAS. I'm now "seeing" Amy Smith long-distance for the Lyme diseas No progress yet but we've not got on to the main antibacterials yet, only some prelimani things. You might look at this thread I put a lot of possibles I found alog the way in there, one of those might be some good to you, depending what yolur situation is. If you're able to traavel a reasonable way, your options will be a lot wider than mine wef! Welcome to the forum.
  5. @kakrpa - thanks vvery much for replying, but did you actually read any of what I said? I do appreciate your taking the time to try and help, but you'll only be wasting your time if you don't read the question and so end up posting things that I' e already been through! And it's made me a LOT worse. No offence, I'm sure there is a way of saying this that doesn't siund like blaming you for it, but I can't work one out so can only say that's not the intention. I'm not blaming you, I just don't want you to do that again. (Just worked out how to do that @ thing, let's see if it works.) EDIT Jusr looked bac and, in fact, you actually might not have seeb it because it did get a bit buried and was also pretty well illegible! So here's the salient bit again . Hello Kakrpa, Ah, I'm afraid even saying the word out loud one is well into screaming and beatin my hea against the walls territory, let alone hearing it said out loud. Wer'e talking PANS-style monster OCD here. I know I just shouldn't be that extreme, but I can't help it. I reongise that the idea is to not do that, but I'd have become totally irrational by then. I need to say, I do know perfectly well what ERP is and what the basic principles are. (I'm not meaning I'm taking offence at being terated liked I don't know. I can just see this going on for a very long tome with people telling me things I've known by heart since I was 14, before ever getting on to anything relevant, if I don't set that straight now.) it's just that I can't work out exactly how to apply it to something as weird and abstract as this. That's why I'm asking a special qestion on ere. Thank you very much for still being here and talking. For instance, when the trigger is a thought in your head, what's the distinction between expoxure (allegedly a good thing) and ruminating (a Bad Thing)? Yes, just thinking this word can set me off, or rather, wen I sponaneously think that something is describable as "[...]". And how do you disentangle the rational fear, the irrational fear, and the compulsion? What I mean by rational fear is, that I'm kind of making this word mean all inds of things hat it doesn't mean according to the dictionary - well, that it can sometimes, in fact quite often, be used to imply, but that aren't part of its definition. (I would rather not come down to anything more concrete than that unless I can do it by private message.) Consequently, just having people tell me (as you and Bob just did) that what I shoul do is et used to it, without any apparent acknowledgment of what I've said about how it means all inds of horrible thing to me, reliably just makes me more agitated and restisnt than ever, because it seems as if they're tellin me I have to accept and get used to accepting all the horrible things that I associate with that word! I sort of see that what's really happening is that you're just taking it as readd that all my reasons for objecting to it aren't in fact logically sound, and jumping straight to the en. But I don't in fact have that level of insight yself, not reliably! So, I'm rationally against all the things that the ord maes me think of, and irrationally against the word itself and anything it can mean on account of that. Sounds starightforward written down, but since the whole point of a word is to mean things, it's very difficult to comprehend in practice. It's rather similar to the problem I see people with paedophile OCD having. They react with horror to being told that they shold "accept the thoughts" and "traoin themselves to not mind them", beca\use they go, "what, you're s\ayingb I should accept being a paedophile and get to npt mind it?" Of course, the thing there is that it's not being a paedophile you're supposed to accept, it's the THOUGHT that you might e a paedophile. But that's a ferociously difficut thing to keep straight in yoiur head, hence the constant stream of people asking questions lie that on the OCD fprums I used to use, and with mine it seems even more difficult. Is there anything that helps yiou get a clearer idea in your head of the difference between the actual word (and its actual meaning in itself) and the horriblethings you're associating it with? I think this is part of the extra stuff that CBT has and ERP dpesn't - the so--called cognitive lement - i.e. trying to learn t o understand why what you're supposed to be doinng isn't in fact the disaster yoiu think it is, rather than just "never mind why, do as I say". I think propbably how much you need the cognitive side rather than just going straight for epxosure depends on how good your insight is already . Well, my insight is crummy. That sounds a little like special pleading, but hinestly it is crummy.
  6. Wombat140

    Bullseye Rash, Lyme and New Tics

    Have you got Stephen Buhner's book "Healing Lyme"? It's a vast reference on all kinds of stuff about herbal treatments for LD (and on LD in general - I understand how LD actually works far better than I did before I got the book!) Bear in mind that thre are different schhools of thought aboiut herbal treament for LD. Samento and Banderol are proprietary herbal extracts (Samento is a specially treated Cat's Claw, Banderol is some plant that I don't thi nk anyone else uses but them) that belong to the Cowden Protocol, which Buhner has a veruy low opinio of for various reasons; however, othee people swear by it. One thing about the Cowden Protocol is that I have the impression it is quite strong by herbal standards. The full official protocol includes various things that are purely to counteract any herxes, and also requires drinking outlandish amounts of water to flush stuff out - 3 litres a day for an adult! I'm not sure whether taking the Samento, Houttuynia and Banderol alone ois something you're supposed to do. It may be, but you might ask. (That's their theroy, anyway, and mighjt not be right; I've seen one person asaying mounrfully that the anti-herx rremedies gave them herxes :-) ) The ND's prescription sounds more like something inspired by Buhner's protocol - ordinary Cats Claw and Japanese Knotweed are among the central things in that. I beileve that's less drastic than the Cowden ones - Buhner's principle is that it's not rue that you're not getting better if you're not herxing, he claims that the majority of his patients don't get that at all and if you do you should lower the dose and see if that helps. Good luck!
  7. thanks Bob. I mean, I can't travel within the UK. I feel lie you probably want believe me about that; people on here seem to hink that if it's in the UK, that should be near enough for anybody! I forget who it was that said, "The difference between the British and the Americans is that the British think a hundred miles is a long way, and the Americans think a hundred years is s long time". But honsetly, you'd seen me, you'd agree that expecting me to go regularly to anyone mpre than half an hour away is just not practiocable. But I was thinking that what he said about treating people at home if they need it suggests that he might understand, and look for other people who would understand, the idea that sometimes treating people at a distance is nescessary.
  8. Wombat140

    HELP!

    That's great news! Really pleased for you. It's always such a relief when things do let p at al! Good luck with the operation, I hope that does good things for you too. Something I thought I'd mention: My symtpoms make it imposible for me to travel any distance, I could never get to Chicago. At the moment, our only hope if it comes to IVIg (I'm currently on herbal stuff for Lyme dises, under Amy Smith of California, so we're seeing if that'll work first) it to contact those people at Oxford who did that trial recently about autoimmune causes of hscizophrenia (which used some kind of intravenous treatment, I can't find out whether IVIg or PEX), and ask them how they wangled it and whether they can think of any way I might be able to try it. WOrth considering. Yoiu'd probably still have to pay though, bu it might not be as much. (chunk of links, which is as far as we' ve got ourselves at the moment: Autoimmune Encephalitis Alliance Belinda Lennox — Department of Psychiatry King's College London - People at the Stress, Psychiatry and Immunology Lab & Perinatal Psychiatry Professor Ed Bullmore :: Cambridge Neuroscience Depression: A revolution in treatment? - BBC News BBC Radio 4 - The Inflamed Mind Autoimmune attack behind some cases of schizophrenia | New Scientist )
  9. Wombat140

    Antibiotic side effects!

    Thanks yourself. It's nice somehow to know one othe person in the UK who's dealing with this, even if we don't actually overlap very much what with having (what seem to be) differe t infections! As for me, I'm doing my best but it's difficult because my symptoms make it next to impossible for me to travel; I could never go to Chicago like you're thinking of doing. I've posted on your other thread.
  10. Wombat140

    Antibiotic side effects!

    Where did you hear that? Did your doctor tell you? I had that impression, that you couldn't have it, but I didn't know what were the actual guidelines involved if any. I did Open University myself, by the way. Just a thought to consider. You can )I think) transfes credit if next year you find you're able to go to a regular universiy. Hope your innards are bettee by now. If not, try and get peppermint oil capsules, I always saay that, they work like magic on some kinds of stomach trouble - they dpn#t work for everything but always worth a try. Healthspan.co.uk have got them.
  11. Hello Kakrpa, Ah, I'm afraid even saying the word out loud one is well into screaming and beatin my hea against the walls territory, let alone hearing it said out loud. Wer'e talking PANS-style monster OCD here. I know I just shouldn't be that extreme, but I can't help it. I reongise that the idea is to not do that, but I'd have become totally irrational by then. I need to say, I do know perfectly well what ERP is and what the basic principles are. (I'm not meaning I'm taking offence at being terated liked I don't know. I can just see this going on for a very long tome with people telling me things I've known by heart since I was 14, before ever getting on to anything relevant, if I don't set that straight now.) it's just that I can't work out exactly how to apply it to something as weird and abstract as this. That's why I'm asking a special qestion on ere. Thank you very much for still being here and talking. For instance, when the trigger is a thought in your head, what's the distinction between expoxure (allegedly a good thing) and ruminating (a Bad Thing)? Yes, just thinking this word can set me off, or rather, wen I sponaneously think that something is describable as "[...]". And how do you disentangle the rational fear, the irrational fear, and the compulsion? What I mean by rational fear is, that I'm kind of making this word mean all inds of things hat it doesn't mean according to the dictionary - well, that it can sometimes, in fact quite often, be used to imply, but that aren't part of its definition. (I would rather not come down to anything more concrete than that unless I can do it by private message.) Consequently, just having people tell me (as you and Bob just did) that what I shoul do is et used to it, w any apparent acknowledgment of what I've said about how it means all inds of horrible thing to me, just makes me more agitated and restisnt than ever, because it seems as if they're tellin me I have to accept and get used to accepting all the horrible things that I associate with that word! I sort of see that what's really happening is that you're just taking it as readd that all my reasons for objecting to it aren't in fact logically sound, and jumping straight to the en. But I don't in fact have that level of insight yself, not reliably! So, I'm rationally against all the things that the ord maes me think of, and irrationally against the word itself and anything it can mean on account of that. Sounds starightforward written down, but since the whole point of a word is to mean things, it's very difficult to comprehend in practice. It's rather similar to the problem I see people with paedophile OCD having. They react with horror to being told that they shold "accept the thoughts" and "traoin themselves to not mind them", beca\use they go, "what, you're s\ayingb I should accept being a paedophile and get to npt mind it?" Of course, the thing there is that it's not being a paedophile you're supposed to accept, it's the THOUGHT that you might e a paedophile. But that's a ferociously difficut thing to keep straight in yoiur head, hence the constant stream of people asking questions lie that on the OCD fprums I used to use, and with mine it seems even more difficult. Is there anything that helps yiou get a clearer idea in your head of the difference between the actual word (and its actual meaning in itself) and the horriblethings you're associating it with? I think this is part of the extra stuff that CBT has and ERP dpesn't - the so--called cognitive lement - i.e. trying to learn t o understand why what you're supposed to be doinng isn't in fact the disaster yoiu think it is, rather than just "never mind why, do as I say". I think propbably how much you need the cognitive side rather than just going straight for epxosure depends on how good your insight is already . Well, my insight is crummy. That sounds a little like special pleading, but hinestly it is crummy. Hello Bob - Is there anything particularly special about this one and thd people he recommeds? I have sound sensitivities and really nt good with podcasts. PANS-literate sounds good. When I did a We searh for his name I also saw somethi g where he said: Which sounds encouraging, obviously he can hardly come and visit me in the UK but surely it means he would at leat ne able to get his head around the concept of "can't travel to see someone is there anyone who can work long distance"!
  12. Wikipedia says that it's been renamed Volkameria inermis, if that helps, so you could try searching for that if you haven't already. Sorry I can't suggest anywhere myself - my usual source for everything is bristolbotanicals.co.uk, but even they haven't got it, under either name. It sounds as if Juwayriyah grows her own. edit: I've jsut done another Web search and found that you did find some from "toptropicals.com". Did it help?
  13. Kakrpa - er, thanks. But I have no idea how to go about that, that's the trouble. Could you give me any advice? It's how that's baffling me - like I say, since the whole point of a word is to have associations, if I just throw myself against it while thinking all the same things about it as usual, then all I'm doing is confirming to myself that yes, it is about all those things and by definition it is terrible. Also, I can't do it. And also, when I have occasionally managed it, it indeed doesn't seem to be doing any good. Incidentally, why is it always just "ERP" on here? On the usual OCD support forums I visit, it's always CBT - i.e. ERP plus cognitive elements - and using ERP alone is considered a bit primitive. But here it's always ERP that's talked about as the treatment for OCD, all by itself. Why is that? (It strikes terror into me because I have a shrewd suspicion that forcing me purely mechanically through basic ERP, without any attempt at explaining why what I'm being exposed to isn't the most terrible thing in the universe, would just lead purely mechanically o me screaming and beating my head against the walls.) Thanks Bob. I'll bear that in mind, though it's awkward because I'm on the waiting list to see a psychologist already - just the local hospital one. I've been "assessed" by her and she talks as if she has something in mind to refer me to, but whether she has in mind someone with special expertise of some kind (and, if so, in what - there was some talk a while ago about a local centre for autistic spectrum disorders, so it might be that, or something else), or just one of the standard local CBT people, I don't know. If it's the latter I suspect they'd be wasting their time - I got sent home from a CBT therapist once before, and she did specialise in OCD and ASDs. So it might be awkward to complicate things with somebody else at this point. All the same, I'll discuss it with my parents. I do think that this is a tall order to deal with by myself and that I need to see someone. But it'll presumably take weeks at best to get to see a psychologit, so I was just hoping for some adice about what to do in the meantime.
  14. Again, I've posted something in the OCD forum. I'm just mentionng it here in case people don't see it there. (please reply there rather than here.) Sorry if this is naughty, I just don't know how many p[eope actually look at the OCD forum, it's so quiet! https://latitudes.org/forums/topic/25089-how-do-you-deal-with-a-phobiarevulsion-of-a-particular-word/
  15. I was prescribed mitochondrial support supplements once (didn't end up taing them for one reason or another), but they just seemed to be B vitamins and animo acids and such that you might find in any amount of other supplements. How's the mitochondria-specific supplements meant to be so different? (I even e-mailed the practitioner at the time, but got no explanation only words to the effect of "it IS different, it is formulated by experts and it IS worth the [very large] price"! )
  16. Wombat140

    Travel for treatment!

    Hi, I haven't anything useful to recommend but just wanted to say that I know exactly what you're going through! I'm in the UK too and currently relying on long-distance advice from Amy Smith of California. I've been struggling with the specialist-can't-prescribe-without-meeting-you-local-doctor-can't-prescribe-for-something-the-system's-never-heard-of conundrum as well. I'm Lyme disease treated with herbs unfortunately (it's so extreme we daren't risk antibiotics as Lyme is notorious for herxing), so I can' suggest anything about antibiotics. Bit I wish you the best of luck and I hope you let us know what happens, if you can find a moment! Actually, I remember I did start a thread about PANS treatment outside the USA, but nobody except me ever started posting i it. I collected soe information there so there might be sometihng useful to you there, I don't remember:
  17. Anyone? How DOyou approach it when it's a word? It being a word seems to cause special difficulties in knowing what to do about getting over it, because it's kind of abstract. So how do you go about getting over a bad reaction to or bad associations with a word? They are such nasty clinging sort of associations. They cling all over me and rub at me with their sticky hands. I'm aware that this is not what associations are supposed to do. <sighs>
  18. I was wondering if anyone here knows about a thing that I have that I've heard about very occasionally, but it seems to be very rare - a horror of a particular thing, or in my case it's a word (see Desperately need to talk to somebody - poison words), not because I think it will cause something bad to happen but in its own right - that thing just is, in itself, a horrible thing to me. And yet it's not something that anyone else considers a problem. When I try to ask people about mine, they go "But it's a nice word". Has anyone any knowledge of this and how you go about getting over it? Does anyone know of anyne who's ever recovered from this? I'm currently pinning all my hopes on seeing a psychologist, but even when that happens, I d afraid they'll never have heard of this or know what to do about it!
  19. Wombat140

    Psychosis or PANDAS/PANS/OCD

    MomWithOCDSon, that sounds so much like the way MY head's behaving right now. I's like it's created this fictional parallel version of everyhing around me, and it gets more excited about the imaginary version than the real one.
  20. Wombat140

    Adult with PANS

    27?! That makes me with my onset at 13 feel quite mainstream. I've been told occasionally that it can't be PANS at that age. Well, somuch for that, evidently. I think there is supposed to be a reason for it in that it's supposed to be a thing that happens when the immune system isn't fully developed yet, but perhaps yo u and I just have something odd about our immune systems. I mean, genetics can get you in all kinds of ways, so maybe we have some kind of as-yet-undiscovered genetic problem with our immune system that meant that whatever it was that's supposed to have happened by then that makes you no longer susceptible to PANS reactions, hadn't. Just speculation. (It's also, I think, true that neurological Lyme disease is mostly not even about immune reacions but to do with the bacteris directly nib bling at neuron insulation, so presumably thed developed-immune-system thing wouldn't apply.) (I am literally like a house with mice chewing the wiring. :-) )
  21. Thank you for remembdering about me, Plum! I need all the help I can get with this - and on this forum, I'm getting it. You're all being a great help. IVIg is definitely a distant possibility, I'm afraid; my parents are talking about it only as a last resort if neither Amy nor the psychologist have sorted things out, and that, as I say, looks like taking a long time. And after that, it's extermely doubtful wheter we can get it - that's why it's a last resort. In this country, immunoglobulin is in short supply and so is rationed to people who seriously need it, and I doubt if any system would recognise me as needing it. PEX wouldn't have the same objection but again I don't know who'd arrange that. The only hope we can see is to contact the people at Oxford University who did that recent study on autoimmune schizophrenia, which successfully used some kind of immune treatment though we don't know whether IVIg or PEX, and ask them if they can suggest anything. Still, that's very encouraging story! (I have also heard something about new American guidelines recognising IVIg as a reasonable treatment for PANS - so perhaps that'll fractionally improve the possibility of British doctors being able to approve it for me.) The prospect of the psychologist seems to be getting further and further off. I've sort of agreed with my mum that we can contact her once I've got as far as having my follow-up phone appointment with Amy, but Amy says to do that when I've been on all the preliminary things for 2 or 3 weeks. And though I've been on most of them for much longer than that, we didn't manage to obtain the very last one until a few days ago. (I'm going to contact her secretly and remind her about that and ask if it matters.) So in the meantime, I would be ver grateful if anyone can give me any suggestions about getting over this - it's poking its nose into everything.
  22. That is a one. Plain bizarre, as well as exhausting. Well, six year olds don't do making sense anyway and when you cross that with PANDAS... Glad if she's not sp bad with it now. Somebody on another forum suggested that it might have something to do with a traumatic event - she gave the ex\ample of someone who's in a car accident and there's a cherry air freshener in the car and thereafetr they hate the smell of cherries without necessariy even knowing why. That makes a kind of sense to me, it does seem to fit the way it behaves to suggest that it's a kind of conditioned response. But I don't know what the event would have been unless it was the OCD onset itself. That was traumatic right enough, since it was the famous out-of-a-blue-sky PANS onset and I had no idea what was going on, only that I felt as if my mind was being sucked out htrough a straw every time a car went past and that everyone was telling me that there was nothing and to stop being stupid - since they had no idea what was going on either and could only think I was just play-acting for some reason! But what the connection might have been, or where that would get you, I don't know. It seems t me that the way it works is that I mean roughly the same thing by it as most people - well, I think I do - but it's the associations that are off. When I think of that word, I think of the most creepy possible images that you could connect it to, and if I think of it applying to anything my mind immediately jumps from there to those. What do you mean by ERP? The name ERP always suggests to me being faced with the thing and held down by three strong men until the screaming stops. Well, with me it really would be a case of three strong men and also it does't seem to work; I can carry on being in a state for as long as we've ever tried it and the more efforts people are making to force me to stop, the more I/it fight back. In any case, it looks like being a while until I can get to see anyone; first I haveto see the local psychologist, who assessed me a while bac and would be making the referal, the referra, to discuss her conclusions and what's the best thing to do, and she says it's a two or three week wait just to see her. In the meantime, these wrod things are giving me the runaround and getting out of control, getting mixed up wth everything - they've become my main obsession now, in the last month or two. Can anyone make any hints about how you make friends with a thing that you've developed a horror of? I've been maing tentative fforts but it's often hard to know wher to get a foothold - how to come up with any way of seeing it as anything other than terrible, and how to get it to stick once I have. By the way, here's a thing. Yes, this is the word I'm talking about (or the maion one - I have various secondarty ones too at the moment), but please, don't say it to me for exposure's' sake, as I can't cope with that at the moment.
  23. Thank you, both of you! I was thinking it was just me, and that's never a goood feeling. And if it's commonish in PANS cases, and there are a fair amount of those about, maybe that means thetre's a chance that a psychologist I see might be aware of it. Yes, mine shapeshift something awfull, too. I suspect there are underlying psychological issues, but I also suspect that they wouldn't be doing this if some mechancial fault in my brain wasn't just convinced that something must be wrong and was just using them as inspiration for what kind of terrible thing might be happening. That mae sense, sdo you think? I should upaate my signature. I'm currently on Lyme disease. We've gone back to Amy Smith and she has me on various preliminary things to try and get me in better shape before starting on antibactieral herbs. HOPEFULLY shouldn't be long now; we've had a ludicrous amount of delays trying to get hold of the last preliminary thing! Unfortuntatrely I can't take any kind of psychoactive medications because my OCD won't let me. When I've forced myself to taethem anyway, t goes into screemaing lockdown claiming that I can't know whether it's safe to do ... pretty well anything I'm trying to do ... or whethet it's just the drugs making me think it is, and I'm practically unable to move at all until enough time has passed that I can feel sure the drug is out of my system. It's really inconveniaent beause I can't even take half the standard herbs for Lyme diseas (specifially, notweed, cat's claw, skullcap and ashwaganha), because they're supposedd to have psychoactive effects as well as pyhiscal effects. Any mors tories fro olther peple would be apprecaited, esppecially if you can say anything about how you got over it.
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