Wombat140

Hi Patmom, how's it going? Any progress? I do hope your daughter gets better soon.

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!

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.)

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

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.

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.

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?

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

*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

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!

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!

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.)

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!

Hi Kakrpa, am PMing you.

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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.

HELP MEEEEEEEEEEEEEE

Ta

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.

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.

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.

@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.

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!

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.

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 )