Wombat140

Hi - sorry I didn't respond before, I was waiting until I'd had my appointment. Afraid CBD oil illegal in this country (probably - exact situation seems vague), also it comes into the category of "silly money" for us. Well, I had my appointment with Mr Freestone on Tuesday. What a relief - he talks! The other one, that I've been seeing for the past year with more or less random results, was quite strange to deal with, because he never said anything hardly. He would just sit looking at me while I talked until I came to a halt from embarrassment, and then say, "So anything else you want to tell me about how you're feeling?" or something like that, and never comment at all. So I never knew whether what I was saying was suggesting anything to him (or indeed whether he'd understood it properly), or whether he was just prescribing by guesswork. But Mr Freestone talks normally and it makes it so much easier! And from the way he talks, I very much got the impression that he is familiar with the kind of thing I'm describing, and thinks he knows what to do about it. That's a big advance on either of the two I've seen in the past, who had more of an air of "well, I've never seen anything quite like this before but I'll do my best". Also, he's given me not one but 3 remedies, all to be taken at different intervals and for a different specific reason. That sounds like the action of someone who thinks he has a fair idea what to do, doesn't it? So I'm hopeful; let's see how I get on!

I've heard it said that if somebody responds well to steroids, it shows that they'll almost certainly respond well to IVIg. (Can't remember where I've seen that, except that Pianogirl says her IVIg nurse says it - but I've seen it in other places as well, I'm sure.) So that might itself be another argument to suggest to the insurance people.

I just wanted to say thank you both so much for the answers! I daren't join Facebook. I'm dreadful about getting addicted to forums as it is, wasting far too much time on them, and those are just normal forums whereas of course Facebook is specifically designed to get you to spend as much time as possible. But I've contacted Alan Freestone. Wish me luck! As a chemistry student, I don't understand how homeopathy can work either, but from the cases I've heard and the things that have occasionally happened with me, something seems to be going on; so I can only assume that current science is missing some more major things than it thinks it is!

I don't know what to do. I feel like I've run out of things to try. I've just failed for the fourth time to get a blood sample taken. My OCD, or whatever you'd call it, is really bad - I'm reacting to pretty well everything, and with such violent, exhausting compulsions. I don't often seem to get replies to my postings on here for some reason; I don't know why that is. Maybe my questions are just particularly difficult? But I could really do with some advice here, please, if you can. The only thing that sometimes seems to have worked for me (except ibuprofen, some of the time) is homeopathy. I've been to two different ones in the last few years, and sometimes got some really good results, but it never seemed to get to the point where they could be sure of something working - it was always as likely not to work as to work - and eventually it petered out. It's only a few days ago that I wrote to the second homeopath to call it a day, because we'd definitely reached that point. I don't think either of them had much experience with this kind of OCD/TS/PANS/autistic spectrum thing - standard "anxiety disorders", maybe, but not the Martian type. Does anyone know a homeopath who really does get results with our particular kind of condition, at at all feasible prices? Or any other kind of practitioner, for that matter, that really gets results? Paying silly money would be one thing if I could expect it to work, but for a long shot... it's not me that pays, you see, it's my parents, I can't go on throwing their money at long shots. I'm in the UK and can't travel, but can do Skype if that's an option. Many thanks, Wombat140

To put it another way, an allergy is a reaction involving the immune system, whereas an intolerance can be any kind of bad reaction. (So allergies are one type of intolerance.) The skin prick test you described is specifically a test for allergies, I think - it wouldn't necessarily catch any other kind of intolerance, that didn't involve the immune system. There are tests for a few specific types of intolerance (there's a urine test for a particular type of gluten and casein intolerance, for instance, in which a particular type of peptide gets into the bloodstream and comes out in the urine), but intolerances can work in so many ways that I think the only way to catch all of them is to do an elimination diet - systematically cutting out different foods and seeing what helps. (Here are a couple of threads where people advised me about how to do that when I did it myself: PLEASE, how do I do an elimination diet? and How long do milk and egg reactions last?) I'm not including the more out-there tests in that - kinesiology (muscle testing) and so on - they may work for all types of intolerance for all I know, if they work at all, but I don't know anything about them first-hand. Good luck to you and your son, anyway. Wombat140

Hi Pianogirl, Thanks for the reply! I was on 5mg a day for seven days. So I'm just glad to hear that the fact that I didn't respond to what I took doesn't prove that it's not PANS! (I'd have very little chance of getting them longer term anyway, they're very very cautious with steroids over here - I'm just looking at them as a test rather than a treatment.) That's strange about the appetite thing. I was really surprised to see that I'm not the only one that gets that! The PANDAS doctor that I saw for a while did say that it's possible for the strep infection (if it's strep) to be in other places, like the gut, rather than the throat. Maybe it's connected. I can't remember whether my appetite was better when I took antibiotics - it was a year ago and my appetite wasn't quite so problematic at that time anyway. Not that the antibiotics had much effect on the OCD symptoms, so they may not have been working anyway. I went to the doctor two weeks ago and she thinks it's unlikely to be the ibuprofen, since I've only been taking about 2 or 3 a week. She's prescribed two weeks' worth of ranitidine (acid blocker) to see if it's inflammation or an ulcer, which is what they usually seem to try first for any kind of indigestion around here - my dad went through all of those when he had trouble with indigestion! Glad to hear you're so much better, and I hope the chorea soon starts to go too. Best wishes, Wombat

IVIg just simply can't be got here in the UK by all accounts, at least not for something like PANS (there's a shortage of immunoglobulin, so it's reserved for patients with life-threatening conditions), so I'd be glad if any of you could explain what the "immune boosting supplements" might consist of. Worth trying, if we get to that point. Thanks, Wombat140

Just wanted to say thanks very much for the encouragement. Helps. I hadn't actually re-read your posting before replying so I think I was remembering it not quite like it actually was. I know what you mean about the "non-OCD perspective"... it's easy sometimes to lose track of what normal life actually looks like! I do do my best to keep a diary of symptoms, but they're so chaotic, it's often hard to be very specific about it. With a lot of things, especially just at the moment, I don't really know what'll set them off until it happens. There are very few specific things I definitely can or can't do! Thinking about this gives me some ideas of how I could make the diary more specific than it is now, though. I'm pretty sure, from what notes I do have, that the homoeopathy really isn't helping, though. This last remedy - 9 days ago - seems to have made things worse if anything, and there's no sign of them getting better. I think he just doesn't really know what he's doing. Thanks once again for the support!

I get that a lot.

For that matter, how did you find the homoeopath, please? The first one I saw got great results for a while, but admitted to having very little experience with mental symptoms, and eventually said she'd run out of ideas. The second, well, I can only say he's not getting results - I don't know any more, because he's not telling me anything. ( latitudes.org/forums/index.php?showtopic=23036 ) I may be a difficult case, I suppose, because I have very few physical symptoms, so that would give less of a clue to what to use. Did you and your sons have physical symptoms? Glad to hear you're doing so well, anyway. So there is hope! Wombat140

Hi Momwithocdson - Sorry, I meant to reply sooner, but I was tired and kept putting it off - you know how it is - until I forgot all about it! I was cross when I first read your answer, but you're right, actually. At least, you're right about the reason. I think it is, at least partly, that I don't want to face the next lot of OCD compulsions. And that applies, irrationally enough, even if I'm already having some kind of OCD difficulties with what I'm currently doing (say, if I'm just sitting there rethinking something over and over again in my head, which happens a lot at the moment). I just instinctively want to stay safely in the frying pan :-( Unfortunately, it's not as simple as "work out what bit of OCD you're afraid of then do ERP and get rid of it." If you look at my signature, you'll see I've had OCD for eleven years now... if "getting rid of it" was an option, it'd have been gone years ago, and heaven knows I've tried. As for "getting into the habit of getting straight on with things", if I could do that, I wouldn't have a problem, would I? I've been trying hard enough to do exactly that for the last few months (especially). Or was that not what you meant? I've found I'm capable of ignoring any amount of timers and alarms. The trouble is, it's rarely possible to stop what I'm doing instantly. I usually have to at least (say) save my work, if I'm on the computer, and that gives me time to get distracted again. One thing that does seem to help, though, I've found lately, is to write out what things I want to get up to do next morning (say, "Copy out assignment draw cat read Oakleaf Bearers"), and prop it up beside my bed. That way I can see clearly what the point is, and also I have something ready to start on, so I know I'm not just going to be left alone with my OCD thoughts when I get up. Also, there are some things I take much longer to uproot myself from than others... the computer, for instance, and also I tend to sit on my bed wrapped in a blanket in the morning while I'm waiting for Mum to come downstairs (I can't come down until she does and has finished messing about in the kitchen, for various OCD and practical reasons). So I've started never using the computer after tea (dinner, whatever you like to call it), and that Mum going downstairs in the morning is the signal for me to gather up my things and get up off the bed so I'm ready to come down as soon as the coast's clear. That seems to work so far, too... It's often pretty inconvenient about the computer, always something comes up that really ought to be dealt with now instead of tomorrow, but it's worth it! Whoops, got carried away. Thanks for the reply, and I hope you and your son are doing OK. Wombat140

P.S. Pianogirl, I've just been reading your blog. I saw you said that you did a steroid burst and it worked. How much were you taking? I did one with no effect but I've been told since that I was actually on a very small dose. (British doctors aren't as gung-ho as American doctors).

Anyone please? For a different reason I'd very much like to know the answer too. I don't even really know whether ibuprofen helps with mine any more (it certainly used to), but it's the only thing I can do. My mum is at me to stop taking it, because I lost my appetite (see other thread: http://latitudes.org/forums/index.php?showtopic=22988 ) and she's read that that can be an ulcer even if your stomach doesn't hurt. I don't take it constantly, only two or three times a week when I'm desperate. The trouble is, apart from anything else, I feel like such a scumbag if I don't do anything to try and stop it when it's really bad, because it's so horrible for my parents. IVIg is not going to happen for me; even if I could get over my needle phobia (which so far is not happening) I don't think I could get it, apparently immunoglobulin is in short supply in this country and is normally only used if the illness is life-threatening. Thanks for your help.

I've been seeing a homoeopath for a year now. (See signature for nature of problem.) The symptoms now seem to me to be about the same as they were when I started. What gets me is that he won't TELL me anything. We do appointments by Skype because he lives 50 miles away and I'm a little difficult to transport, and he literally just sits there while I talk, and says "Mm" every now and then, until I come to a halt from embarrassment, at which point he says "So is there anything else you'd like to tell me?" After this has happened a few times, I drop it, usually abandoning a few of the things I was going to say as not important enough to bother, and he posts me a remedy and an invoice with the date of the next appointment written on the back. Is this normal practice? Something he did once say makes me think that he has some idea that I shouldn't be told too much about why he's prescribing a particular remedy, because of the placebo effect or something. But what worries me is that he may have got hold of quite the wrong idea about exactly what the problem is - it's not simple to explain, and I'm not always the world's clearest explainer - and be prescribing all wrong in consequence. There was another homoeopath I saw a few years ago who talked nineteen to the dozen, commenting on what she thought I was saying and asking whether she had it right. Didn't seem to do any harm; her prescriptions worked impressively well for the first few months, but then fizzled out (she admitted she'd about come to the end of what she knew about mental conditions). Hence this fellow, who is supposed to be a specialist. I don't know what in. He says "Mm" to questions like that. I only know that I wrote to the UK Society of Homeopaths' enquiry desk describing my condition and they gave me his name. My family are all convinced that he's an Aspie. I get the impression that he has some kind of theory about the nature of the problem, and is prescribing on the strength of it. But since I don't know what it is, I can't tell him whether it actually matches my symptoms or not. The fact that I'm not getting any better suggests not.

In what way? not sure I quite understand you... have definitely had other symptoms over the years that are clearly OCD-like, though.

Thank you very much, both of you. It's not really the kind of thing I can break up - it's a question of stopping reading, or whatever, and actually starting to do anything (useful) at all. I know I should be making a start, but I don't! I'll try it, though, and see if I can make any improvement at all. Anything would be welcome. That's encouraging about your son, anyway, t_anna. Maybe there is hope!

Fascinating article - thanks. I never knew that B12 deficiency and mental symptoms was actually a recognised thing. We've decided that since I'm definitely losing weight, in spite of my best efforts to eat as much as I can, this is something the doctor will take seriously, so appointment booked for next week. I'll raise the question of H. pylori - it's lucky that for once it's something that doesn't require a blood test! Thanks for the warning about the breath test. I haven't been on any antibiotics for quite a while anyway (and I can't stand aspartame, don't know how anyone can like it). I'll let you know how it goes.

Once knew a lady who was diagnosed with bipolar disorder by mistake for Asperger's, of all things. Not even a particularly atypical case of Asperger's as far as I could see - I couldn't work out why they'd thought it was anything like bipolar at all. Bipolar does seem to be a diagnosis that's sometimes just given when they don't know what's going on, whether it fits or not. Of course, there is such a thing as actual bipolar disorder, but the diagnosis seems to turn up in some rather surprising places that don't seem to have a lot in common with it.

I'm sick and tired of always being so LATE. Late coming down to breakfast, late to bed, late at various point in between. Really late, half an hour or an hour. And that holds up everyone else, too. It's not really that I'm disorganised. Most often, I know at the time that I ought to be stopping what I'm doing and making a move, and I'm very anxious not to end up holding everyone up yet again... but somehow, it doesn't happen. Result, same as always. It's always been a bit of a running problem with me, but it does seem to me that the times it gets completely unmanageable are when I'm in a bad way in other, OCD-type ways. That could just be because I'm too tired to be workable, though, of course, rather than a direct connection. I may just be selfish, of course. But it seems odd that it happens even though I really, really want to get back to doing things at normal times again myself. Because it's such a strange, almost-on-purpose-but-not-quite phenomenon, I've occasionally wondered whether it's a PANS thing. Do any of you recognise the same thing, or am I just lazy? (Sorry. I have to stop fishing like this. But it's a genuine question.) If you do recognise it, can any of you suggest what I can possibly do about it? I keep trying to make a great effort and get on top of it, and at the moment it's getting me nowhere at all! Thanks very much, Wombat140

Anyone? Thinking about it, it's interesting because apart from this, I never have any unusual physical symptoms, at all (except for straightforward colds and things, and not many of those). It's all mental/neurological stuff. This is the only one. I'm wondering if it might be a clue to something. Usually, when I ask for help on this site, or read other things about PANDAS or alternative Tourette's treatments, one of the first things I'm asked is what my physical symptoms are and what they react to... and I have to say, um, I don't have any so there's nothing to be got out of that!

Have you been getting cognitive behaviour therapy at all, or only medications? Because CBT really does work for OCD. In fact, the statistics are that CBT alone works better and more often than medication alone (though of course you can combine the two if one isn't enough). The effects also last longer, whereas medication only works as long as you're taking it. And, of course, no side effects! Here in Britain CBT is one of the two standard treatments, alongside SSRIs; I don't know what the rules are where you are. Best wishes, and I hope you feel better soon. OCD is a swine, but things can be done! Wombat140

Hello everyone, Alongside my various psychological symptoms (which nobody has ever got to the bottom of so far...), I have a problem with not having any appetite. It's been that way for years (in fact I've always had a small appetite, though it wasn't until the last few years that it became extreme enough to be a problem), but it's been particularly awkward in the last few months. It's not that I don't need to eat more - I can have got to the low-blood-sugar stage and really feel I need something to eat, but my stomach still feels so full, I can't face eating anything. If I get hungry between meals, or even if I'm just late for breakfast, I have to think very carefully about whether I dare eat anything or whether I won't have room for dinner if I do. A nutritionist I was seeing last year about my other symptoms suggested that this might be silent H. pylori. Does that seem plausible to any of you? I'd like to feel that I do have some kind of a case before I try going to the doctor about this. I don't have any other digestive symptoms, but in the last few months, especially, my weight's gradually been falling further and further, in spite of me making myself eat as much as I can possibly manage, and there wasn't really much to spare to begin with. Also, has anyone found that treating H. pylori helped with other symptoms, I mean psychological/neurological ones? Many thanks, Wombat140

Hmm, how difficult was it to convince whoever gave your older son the diagnosis? If they were fairly open to the idea then, then I'd have thought that since your younger son has some OCD symptoms, and there is a test they can do, they'd consider it worthwhile just doing the test to see. At least, I would if I was the doctor. Good luck.

This :-) http://latitudes.org/forums/index.php?showtopic=22953#entry175950 I'm just mentioning it here in case people haven't seen it in the Diet section - I know that section is a bit quiet. Also, a question about H. pylori: http://latitudes.org/forums/index.php?showtopic=22500 Would appreciate any answers from people who've had experience with either, please.

Hello everyone, long time since I've been here. Just dropped in to ask a question: has anyone here drunk unpasteurised/"raw" milk, and if so, have you ever had any ill effects from it - I mean, in terms of food poisoning? I'm actually not asking for OCD/Tourette's-related reasons, but because I've heard it said that it cures tooth decay. I have one dodgy tooth at the moment that seems to be getting worse and if it did go seriously wrong, then what with my OCD issues and my needle phobia, there isn't a whole lot I could do about it - so I'm anxious for that not to happen. But not if the alternative is likely to result in getting food poisoning, obviously. Many thanks, Wombat140