Wombat140

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.

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.

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"!

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?

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.

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/

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!

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"! )

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:

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>

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.

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. :-) )

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.

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.

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.

I 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/25056-irrational-loathing-of-something-that-others-consider-normal/

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!

Hi Imy3, welcome to the forum. It's horrible, isn't it? I've had episodes of thoughts like that (,mine are usually odd ones that wouldn't make sense to anyone else, but they upset me a lot). I wish I could tell you how to wave a magic wnad and make the thoughts just go away, but it doesn't work like that. Trying to force them to go away in a hurry only makes it worse, because obviously to push something away you have to pay attention to it so if you try to attack a thought you just make it bigger; you just have to let them subside in their own time. It's like trying to sweep ripples off a pond with a broom. The more you swweep the more stirred up it gets, but if you wait a while it'll subside by itself. Take courage, it doesn't necessarliy take that long, if you can manage to be patient and not fight with them too much. Try and think about good things. I don't mean make yourself only think of good things instead of these thoughts, asI just mentioned that's not possible, I just mean try and think of good things as well. That way you can crowd them out. Or at least keep oyur spiritis up until they do subside, which also means you won't be panicking and attacking the thoughts. Reading something uplifitng, or very silly, may help. It's rather like having a illness of some kind - it's misreable but you just need to make a fuss of yourself and try and keep your spirits up and wait for the sneezing to stop. (I just thought of that.) Also, music helps a lot. I think it's lie the draught up a chimney - it keeps your thoughrs going along instead of stopping and swirling around in cicles. NO, you're not an evil person, far from it - everyone makes that mistake, naturally enough. It's often said, the fact that you were alarmed by the thoughts, whatever they are, to start with, proves that you don't like the idea. (no, that doesnt mean you need to carry on being alarmen by them to be in the right - they were a false alarm, so to spea, and you know that now.) The fact that a really nasty idea occurred to you doesn't mean you're bad, it just means you're imaginative.

Incidentally, how do I tell if I'm a "5 drops only" person? The book mentiones that about 1% of people with Lyme disease are hypersensitive to all outside substances and can't tolerate more than 1-5 drops of a rememdy. How do I tell if I'm one of them? I was rather suspicious as I have a history pf bad reactions to things, so I started with 5 drops (echinacea), then as nothing mucn seems to be happening, IO went up to a full odse of 1 tsp, but there didn't seem to be any difference. I later went down to 5 drops again, because things had been rallly dire, but things contiuniued much the same i.e. bad. How do I know which is right? What is "being unable to tolerate higher doses" supposed to consist of?

Hmm. I could really do with some advice, if anyone has any. The latest is: In desperation, on April 10th I started taking the milk thistle again - but I didn't get a headache and the OCD didn't budge. I'm still taking it but nothing's happening. What should I do? Can anyone think what's going on? If it was indeed that it did work the first time, why isn't it working now? I suppose it's possible that it wasd a delayed reaction to another thing, not the milk thistle at all. But then, I'm still taking all the other things I was taking at that point, plus a few new ones, so why the change? An intriguing thing is that the milk thistle seeds aren't meant to do anything for the Lyme disease directly; the point of them is to help with herx reactions caused by other things, by helping to get rid of the gunk released by killing off bacteria. So if it really was the milk thistle that helped, that seems to suggest that some of the other things WERE doins something. (The other things I was taking at the time were Echinacea angustifolia, selenium and green tea extract. I'm aware that these aren't usually considered first priority herbs, by the way. there are resons for that - my OCD won't let me take a lot of the "main" ones, so I'm just taking whatever relevant herbs IO can. And I haven't dared take any directly antibacterial ones yet because I'm in such a bad way I didn't dare take the risk of a herx.) Any help would be much appreciated. I really am despearate for help for help, and the milk thistle is the only thing that I've treid since I started with the herbal things in early March that does seem to have actually made things better! In general, it's just gone slowly downhill since Istarted on the herbal treatments.

But if that does the opposite of what milk thistle does (at least, you seem to think taht milk thistle does the opposite of what I should be doing), then would that make my OCD worse? The trouble is, I'd sooner have migraines than OCD! Anyone else - is there anything else that might do the same job as mlik thistle without being it?

PLEASE READ - Important: please read this posting before replying to anything I post: http://latitudes.org/forums/index.php?showtopic=24834#entry186170 I've been taking milk thistle - or trying to - as part of a Lyme disease protocol, or rather as a precatuin against the possible effects of a Lyme disease rotocal. I took it for a week and within a few days I started having headaches all the time, ending with what was unmistakably one of my old familiar migraines, feeling sick and everything, though I fell asleep before I got as far as actually being sick. I didn't take the milk thistle that evening (not becaude I was suspicious but jsut because I couldn't face taking it!) Headache had gone by nect day. I didn't start the milk thistle again, and the headache didn't come back. Since then, I've tried it twice, leaving a few days in between, and each time the headache has come back within a few hours. My question is, is this some kind of detoxification reaction and will go, or am I just allergic to milk thistle? I didn't think milk thistle was supposed to have a=an effct over such a short time anyway, I swa eome say that it took about a month for the liver enzmye readings to get back t narmol if they'd been up before you started taking it. The annyoing thing is that it did seem a bit better, OCD wise, while I was taking it. I'm not allericg to ragowrt pollen. I do have CBS +/-.

For the information of anyone else: I found one! www.bristolbotanicals.co.uk They stock EVERYTHING (well, pretty close). Apparently people have asked them about this and they started stocking some of the herbs that had previously been missing, specially for that. Very good to deal with, too, quick and efficient and answer e-mail inquiries very fast.

You're a star, LLM. You and Rowingmom both. I've e-mailed both of those people and hopefully they'll be able to tell me where they get their supplies! Good idea about Canada too, I wouldn't have thought of that.

PLEASE READ - Important: please read this posting before replying to anything I post: http://latitudes.org/forums/index.php?showtopic=24834#entry186170 Hello, just wondering whether anyone happens to know a supplier for Buhner herbs in the UK or elsewhere in Europe? The book only lists American suppliers - some of them do ship to the UK but it looks like the shipping costs can be a bit steep and possibly slow as well, so it would be handy to be able to get them from closer to home. (The book suggests just doing a Web search for the names of herbs and seeing who's cheapest. I am certainly not doing that with herbs! I was reading only the other day about a woman who bought comfrey tea off a market stall and ended up in hospital, it turned out to be foxgloves.)