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Everything posted by Wombat140

  1. 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!
  2. Another recipe thread. What are your favourite sugar-free recipes you've discovered over the years, the ones you use all the time? Or any other handy ways of doing things you've discovered, that aren't actually recipes? We can pass them all on here. The person who posts the best recipe... er, is a clever cook. :-) Also, you could post your requests for things you haven't found a good recipe for yet, and see if anyone can step forward with one. That's all the special diets I can think of; if anyone else thinks of one that ought to have its own thread, please start one.
  3. 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
  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
  5. 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.
  6. OK, thanks for the ideas Bobh. Well, you say it's a good idea to do the "easy" thing first but, conversely, I was secretly desperately hoping that this is NOT a good idea, because of PANS issues. Getting this bookcase out will involve most of my most precious posessions being moved (it's floor to ceiling, filled to the gunwales, and things are stored in the gap between it and the end of my bed), and I have serious OCD issues about getting things out, putting things away, and anyone else moving anything of mine, so thithis is going to push me to the absolute limit. (And, consequently, everyone else in the house too - you probably know what it's like when a PANDA is under strain). Is there anyone here who knows about mould? How long is long enough for things to disperse? An afternoon, two days, more?
  7. Hello everyone, Wondering if you can help me on a question, please. I have PANS-type issues which are curently being treated as Lyme disease. There's a fair bit of mould down the back of a very large bookcase in my bedroom and my dad is keen to gget the bookcase out and clean it all out just in case. Now, I'm doubtful about this plan because I'm convinced I've seen somewhere that embarking on large-scale mould removals, thuis presumably kicking up a lot of spores etc., BEFORE any other kind of treatment has been done, is a bad idea. I have NOT had any treatment for mould issues, or indeed any tests; Dad just thinks it would be a good idea to do the cleaning first and see if irt helps. I can't find where I found that though; I've got thtr book "Surviving Mold" [sic] but Ritchie Shoemaker but if it's in there I can't find it. Any opinions? Thanks, Wombat
  8. OK, so I'm on herbal thinhs for Lyme (Amy Smith's my practgiton and having waht Amy thinks is a herx - new and nasty compulsions, fatigue, creaky joints. Amy asked me to come down to doing the herbal things only Mon, Wd&Fri && just the detox things the other days. I've been doing that a week. Still bad. My mum keeps asing me to "go om Latitudrs and find out about herxes". When I ask her find out what she waves her hands and says I don't know. She has Mercurry im Pisces and can't help it. One thing she doers mean is how long do thy last - I should know that, I've been usign this forim long enough, but I can't remember. NOt really capable of doing the amount of searching and teading up requireed for a request as sweepim as "find out about herxes". If any kind poerson could help uz out by giving ,me a quick idito's guid it would really hhhe!
  9. Herx, Lyme, info please? help?

    *smacks head* Amy said that! But I was having an OCD attactk over something else she said about so,ething else and it dfrove it clean out of my head until now! Will get immediately, well, noit immediatel because it's 5:53 on a sunday and not get because my dad will have to go to the shops fpr me. See what I mean anyho :-D
  10. Treatments for Lyme

    Is "botanical medicine" the same as "herbal medicine"? Because if so I think you'll find that THAT's a topic that could go on for ever! If you do a search for, say, "Lyme herb" on this forum you'll probably find lots of stuff, bedsides whetatver comes up in responmse to this thread. As for "German biologicals", not too usre what you mean but is that anything to do with Pekana Herbals of Germany? I've beem taking a couple of their things for a few months now on my practitioner's orders but can't really tell whether they're helping or not (I'm on a lot of things, anyway); all I c an say for sure about Pekana if that they're an absoulte swine to order things from!
  11. Supplement substitute for IVIG

    Any good? And has anyone experienced herxes/side effects with it same as with real IVIg? I'm very interested by this because if the current herbal treatments don't cut it I may need IVIg myself, and unless the guidelines in this country change drastically I haven't a snowball's chance in a supernaova of getting it. (I'ts not, as far as I can tell, a matter off going private or not going private - the stuff itself is in short supply and rationed to people who have conditions that are recognised as critically needing it. Recognised being the operative word here.)
  12. Bullseye Rash, Lyme and New Tics

    Hmm, well, I get the impression that GPs tend to have a standard checklist of things that you automatically try or test for if there's a certain symptom. (For instance, one of the rules of thumb around here seems to be, in the event of any persistent digestive symptom at all, start by trying proton-pump-inhibitor acid blockers just on the off-chance, whthter it makes any sense or not.) Testing for leukaemia suinds to me like something that she always does if somebody's blood count goes beyond certain limits. It would make senmse in general, and it's right of her to check, but in the case of a kid who is known to have a disease that messes with your immune system and white b lood count, well, it seems to me that you don't really need any other explanations. I'm not sure about neutrophils specifically, but Lyme disease definitely can lower white blood cell counts; it's a survival mechanism, the bacteria actively swithc off parts of the immune system to reduce their chances of getting caught. Very clever, but not helpful! In fact, Lyme specialists often expect to see white blood cell and antibody counts go UP once the treatment starts to work, because the bacteria are weakening and have stopped interfering with them. (A rather back-to-front situation, where more antibodies to Lyme disease showing up on the test means that the infection's getting weaker!) I had low white cell counts myself the last two times I has blood counts done, but I was low on iron too so my GP wrote it off as due to that without needing to accuse me of having leukaemia. Anyone who can remember the details better, or where neutrophils fit in, back me up on this? P.S. Anyway, I'm very glad to hera that the ticcing has stopped, and without you having to stop the treatment completely! Good luck!
  13. Diet...

    Idea that occurs to me is that you might have been unlucky and he might actually not have an intolerance to wheat, corn, etc, but does have one to to one of the things he's been eating more of instead e.g. pork or almonds, and that's why he gets worse. Worth asking naturopath maybe. You can get worse-before-it-gets-better reactions with the strict gluten-free-casein-free diet, allegedly, because it's actually withdrwarl symptoms from opioidlike substances that are produced. I've never heard of worse-before-it-gets-better reactions to any other ind of eleimination diet, though, that I can remember.
  14. 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.
  15. 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
  16. 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.
  17. 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.
  18. @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.
  19. 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!
  20. 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.
  21. 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 )