Wombat140

Hello - just seen this thread, having returned to the forum after a long gap, and thought I'd dig it up as this is something I've been wondering about. I've never actually been tested for H. pylori, but a nutritionist I saw a while ago suggested it might be the reason I have no appetite. It's really annoying; I often get to the definitely-low-blood-sugar stage and really need something to eat, but my stomach still feels really full and I can't face eating anything. I don't have any other H. pylori symptoms, though. Does that sound likely to any of you? Is it worth getting tested? And as searching_for_help said, have any of you found that dealing with H. pylori has helped with other (mental) symptoms? Thanks very much, Wombat140

That's interesting about the prednisone dosage. How risky is that amount considered to be? I might just ask my PANDAS doctor about it, see if he's prepared to give it a try or whether he freaks out at the idea of giving someone 60 mg. (I'm only 90 lbs myself.) Steroids and their side-effects are taken very seriously over here, I don't know if it's the same in America. I had Carcinosin myself; there seems to be a bit of a tradition of using it for OCD. The first time, it was 200c once a day for 5 days and made matters dramatically worse, she was very apologetic and said she got carried away and shouldn't have started so high. Later on she tried it again, just a single dose of 30c, which did nothing. I never had strep nosodes, because it hadn't occurred to us at that point that it might be PANDAS. Thanks for the information JTP, I'll definitely let you know.

*sigh* Sounds exactly like my experience with the local homoeopath who charges about a tenth as much. Maybe not, then. Just for interest, what remedies did you have? I know it doesn't always translate to another person, but I'd be interested to know. Prednisolone 5 mg morning and night for (I think) one week. No result. I think that's a fair-sized dose for predisolone, isn't it? Have not done IVIg or PEX. I think I might have ALMOST got over my needle phobia, after much practice, but it's an academic question since Dr Goyal seems very sure I wouldn't be able to get them. (Although he said I should "consider" them - but later when questioned said he didn't think anyone would give me them! It's often difficult to get a sensible answer out of him by e-mail, as he's terribly over-booked.) Immunoglobulin is in very short supply in the UK and it's rationed to people with life-threatening diseases.

Hmmm. How much did they help, out of 10? And did they go on helping, or did it all stop working at some stage? I'm undecided because conventional medicine hasn't made any difference at all to mine, so it wouldn't take much to beat that. Steroids, nothing; antibiotics, nothing; psychiatric drugs, can't take, as the OCD itself objects to them. So not being allowed antibiotics wouldn't be a problem, either. By the way, does anyone know of any other homoeopath who has experience with these conditions and works in England, or who'll consult long-distance?

That's wonderful - I'm so glad to hear that. Hope things continue to get better for him.

Philamom - Thanks for the reply. Yes, it was Stephanie2 that first recommended Dr. Lemke to me, but she now works for Dr. Lemke so it doesn't seem very polite to put such a question to her directly! LaurenK - hmm. Not promising... Just for interest, did it make no difference at all, or did you get what I got with the local homoeopath, i.e. occasional big improvements but they eventually wore off and repeating the remedy didn't work? Also, did she do mostly actual homoeopathy or was there a lot of time spent on what I'll loosely call "New Age stuff"? Not that I've anything against that, but it's never helped my OCD at all and I didn't have in mind to go to a specialist homoeopath just for that! Anyone else with experiences, please?

Just wanted to say welcome to the forum. Sorry you're having such a hard time, I know what a complete swine OCD can be. I hope you soon find some way of getting better. First thing I would think of is cognitive behavior therapy. It has a much higher success rate for OCD than any other type of "talking therapy", or than medication alone for that matter. (Though some people need both together for a while - if so, SSRIs, which are more commonly used as antidepressants, are the most often successful.) By the way, going by your username, do you live in Ireland? If so, you might have a look at www.cbtregisteruk.com - you can search on there for fully qualified CBT therapists in a particular area who have specific knowledge of treating OCD. That does make a difference - friends of mine on another forum have sometimes been referred to therapists who haven't had full training in CBT, only a quick course, or who know about CBT but are mainly used to treating depression. You have a much better chance with somebody who really knows all about OCD in particular. Good luck! Wombat140

By the way, biofeedback isn't actually in any way "energy medicine", though it's easy to confuse the two things if only because it's often favoured by the same people who are into "energy medicine". You're all right with that one. Biofeedback is the one where the patient has a machine that measures and displays a particular body function - for instance, heart rate, or a particular kind of brainwaves - and uses that to train themselves to consciously control that function to some extent. There were some very interesting scientific results with it in the early days, so I've heard, but it went out of fashion among serious scientists because the New Age types took it up. Nothing supernatural involved - it's just been keeping bad company. I don't know where you're up to by now, but I wish you the best of luck.

With mine it wasn't that I hated thinking about it (I did and do, but too desperate to care about a little thing like that), it was that it actually caused an OCD problem - having any of my OCD things mentioned to me immediately set them off. OCD does pick 'em, doesn't it?

Has anyone here had any experience with a New York homoeopath called Dr Angelica Lemke who specialises in ASDs and PANDAS? I've got an appointment (via Skype) with her at the beginning of September, but I'm getting confused. I've been to see another homoeopath in the past, and got some striking results, in both directions, but more or less at random - she admitted she'd never treated OCD before. And I had high hopes for Dr Lemke, because she specialises in OCD, ASD and PANS; but she's so hard to pin down. She's anxious for me to learn muscle testing before the appointment, for one thing - seems to rely on it a lot in diagnosis. Now, I'm not at all sure how well that'll work, with the amount of twitches I have. Also, I looked up a few people and they all seem to do it differently. I asked her about both these things, twice, and she agreed that there were several schools of thought - but said nothing about which ones she approved of, or whether the twitches would rule it out anyway! I suppose what I need to know is: Is she prepared to come down to actual homoeopathy, and to do it the normal way, by symptoms, if the muscle testing and the other New Age things she favours fall through? I've nothing against "spiritual" techniques, but I've tried things like that many times and they've never helped - and, in fact, the worse my OCD is the less I get out of them. My symptoms are going to make this consultation pretty hard work, and besides she's charging through the nose for it; so I'd like to know that she wasn't just going to spend the whole time chattering about "getting in touch with your intuition" to no result... Also, can anyone recommend a good book to learn muscle testing/kinesiology? Dr Lemke did suggest that it might be a good idea to start from books, but she didn't say anything about what was a good one, and you know how variable books on complementary medicine are.

fair enough, just random speculation as I say

Just a thought: since, as Chemar says, calcium seems to complement magnesium in some ways, maybe it would be worth trying calcium instead of magnesium for a bit to see if that has the opposite effect? With some of the B vitamins, several are used in the same processes, so taking one by itself can deplete the others as the body will use up more of them in making use of the supplement. Maybe your son's actually short of calcium and can't spare the extra needed to make use of the extra magnesium - I don't know if that could cause tics, but it seems to make a kind of sense. If you do do that, then you should avoid calcium carbonate if you can get any other form of calcium. Not that there's anything harmful about it, but it's the equivalent of magnesium oxide - it's cheap but not much is absorbed, so it's a false economy. Unfortunately it's also the most widely sold, but you can get other types quite readily by mail order. I agree, if magnesium taurate, magnesium sulphate (i.e. Epsom salts) and whatever magnesium salt is in Natural Calm all make matters worse, then the magnesium itself is most likely the problem, rather than the particular form it's in.

me too by the way, what is an ART doctor?

Father did engineering degree, never worked as an engineer, became a professional guitarist and then a guitar teacher, like you do Having said that, I won't be 100% sure what I have is PANS-related until I actually RESPOND to something I definitely have (what counts as) Asperger's syndrome, whatever the cause of it may actually be, I've a psychologist's certificate. Doing a chemistry degree myself, and funnily enough (considering the other recent thread) just got a distinction on a maths course! That was in spite of much obstruction from the actual symptoms themselves.

Thanks for the reply! No, no digestive problems, I just put it in this section because it seemed as relevant to it as any other. The problem is severe OCD/tics (they kind of shade into each other with me). Gluten-free - well, thanks for the suggestion but been there, done that. Once did the strict gluten-free/casein-free diet for ten months, with no result except that I had diarrhoea and stomach cramp for the first fortnight - how on earth can you have the documented withdrawal symptoms and it still not work? Tried it once or twice since then for shorter periods, too, no luck. Candida - don't think I ever got around to trying that one. I haven't any of the symptoms usually mentioned, the cracked lips and so on. Then again, I have no physical symptoms AT ALL. Which is something, but doesn't give me many clues to go on. Glad to hear they helped so much with your own health, anyway. All the best, Wombat140

Would just like to be a bit cross about apparently irrelevant appearance of Asperger's syndrome in the above sentence. Asperger's has nothing to do with either violence or sociopathy that I ever heard (and trust me, I remember what I read, I'm an Aspie :-) ). Fair point though, apart from that - we don't really know. Apart from anything else, the strain of living with the other symptoms of PANDAS might well be enough to drive anyone crazy... that's something they say about Asperger's too; people with Asperger's have a higher rate of most mental illnesses, but nobody's sure whether that's just because they have harder lives than most people.

Now that's dramatic. Must be annoying for you, but at least you know how to avoid it, in principle! I've seen yoghurt that doesn't list any Streptococcus, only Lactobacillus and Bifidobacterium, so it may be worth checking labels and seeing if that's any better. (I know that because I've been avoiding all yoghurt since I started looking into PANDAS - hard to know whether it affects me as I still haven't seen any clear results from any of the treatment yet!) Also, it's not actually that difficult to make yoghurt at home, if you have somewhere warm to leave the pot to stand for a few hours, or there are those yoghurt maker machines you can buy. Don't know if you've thought of that? Usually you have to use some bought yoghurt as a "starter" to introduce the right bacteria, which wouldn't do here as you'd get strep in there, but I'd imagine you could actually do the same with your daughter's usual probiotic - they usually seem to be largely Lactobacillus and Bifidobacterium of various kinds, which are the kind of bacteria you make yoghurt with.

Sorry to disappear like that - situation changed a bit, and what do you know, OCD suddenly got itself wrapped round the whole question too, making it difficult to discuss it. After a lot of practising I thought I might have got over the worst of the needle phobia. Guess what - now they won't give me an appointment! I am now considered a difficult case apparently, so they insist on referring me to the phlebotomy unit. Quite what that is supposed to achieve I don't really know - they still have to get a needle into me. My mum tried to explain (I can't deal with the phone myself) that the drive to the hospital would leave me in a twittering mess of compulsions and therefore much less likely to get anywhere, but it didn't seem to penetrate. It's stupid, because the whole point is that I don't think I am a difficult case any more, or not as difficult. The doctors' surgery is only a short walk away, so I'm fine when I get there. And I know I can trust this particular nurse not to chatter and set my OCD off if I ask her not to! Had rather a bad experience the first time I tried, with a different nurse - I kept on asking her to stop talking, but that only made her more determined to keep chirping encouragement! Sorry, just had to let off steam. We're going to have another try at convincing them when my mum can face it. lfran - well, see above for the chances of getting me to San Francisco. The state I'd be in by the time we reached the airport (certainly if it rained - problem with windscreen wipers) they'd refuse to let me on the plane. But thanks for the suggestion, and the testing suggestions too. Mayzoo - no problem, I didn't really think you did, I just had to be cross with somebody! 4Nikki - fair point. I'd just feel a lot happier if I could get any clear answer out of Dr Goyal about what use he expects the neurologist to be - I have a horrible feeling that he's just referring me on the off-chance, and I don't feel inclined to go through (and put my parents through) an ordeal like that on an off-chance! (Dr Goyal hasn't actually seen me during a real OCD crisis so maybe he doesn't quite appreciate.) Also there's been no suggestion that the neurologist knows anything about PANDAS, or any other non-standard approach to OCD or tics, so that rather narrows it down. Well, will try and remember to let you know what happens!

"Get a grip" not the most tactful way of putting it... :angry: OK, I know you didn't mean it. The OCD IS the problem, that's the reason I'm supposed to be having all this stuff done. Believe me, I've been through CBT/ERP techniques until I want to scream, and if they made the slightest bit of difference, I wouldn't be stuck here messing about with hypothetical infections. Catch ********ing 22... I was joking just now that my OCD picks these things on purpose to prevent me doing anything about it, but quite seriously, it's beginning to scare me how much it behaves as if it had a mind of its own edit: I'm in England so Rothman program no good to me, thanks anyway though. Sorry for stroppiness of posting. That tends to happen if I talk about my OCD too much... That apart, can anyone answer the original question - i.e. as long as I can't take psychiatric drugs or have injections, is there any point in my seeing a neurologist, given that I'm already seeing this other doctor anyway?

Like I said before, my OCD will not let me take psychiatric drugs of any kind. (Just reading about the amnesia thing had me twitching all over the place...) Little ********* that it is.

Handy to know what tests he's talking about, anyway. But do any of you know if they're on the level? I mean, are they recognised as at all reliable by anyone but themselves? Tests of that kind vary so much. Obviously you wouldn't expect to find that out from their own websites! Sorry, he hasn't said which hair test, or even what it'd test for. It's all a bit of a mess at the moment, because he's got a new baby so all I'm getting out of him is hurried e-mails every once in a while.

I can't really say I'm afraid of anything particular that I know of, it just seems to be Pavlovian. I'm quite OK with the idea in my head, and until they get within an inch of my arm - then suddenly I'm on the other side of the room, AGAIN. I'd be puzzled if it was that I was afraid of the pain, since I'm fine doing much more painful things than that normally. I think it stems from when I got an iron deficiency aged 7 and had to have blood tests about a dozen times. (Although it does seem to have got steadily worse since then.) I did have that stuff one or two of those times, it made it hurt a lot more. (Some weird autistic spectrum thing, maybe, or it could be in the family - there are several kinds of painkillers that don't affect my dad.)

Sorry, another question: Since August I've been seeing a doctor, Dr. Goyal, who knows something about PANDAS, and trying various antibiotics and supplements without any clear result. (One difficulty is that I have a needle phobia and so far it's proved impossible to get a blood sample from me, so he's going by trial and error.) He's now very eager for me to see a neurologist. Only explanation he gives is that "There are treatments we can't offer you that the neurologist might". Now, it'd be very difficult for me to visit this neurologist, with my OCD symptoms the way they are. Apart from anything else, he can only see me at the hospital, and the hospital is always full of bleeping noises and burbling TVs, which sends my sensory sensitivities haywire. My OCD will not let me take any kind of psychiatric drugs (I know - you'd think the darn thing had a survival instinct). Dr Goyal has said already that it's most unlikely that anyone would give me IVIg or plasma exchange treatment (even if anyone could get a needle into me, which they couldn't). Given all this, do you think there's actually anything the neurologist could do for me that Dr Goyal couldn't? The neurologist doesn't claim to know anything about PANDAS, by the way. Many thanks, Wombat140

Hello - not been on this forum for a while, but I could do with some advice. I've been through several antibiotics on the advice of Dr. Goyal, the PANDAS doctor I finally managed to find, but unfortunately it hasn't done the trick. One of the big difficulties is that I have a needle phobia, and so far it hasn't proved possible to get a blood sample from me, so he's basically working by trial and error. (That reminds me, he did give a referral for a throat swab, so we ought to sort something out about that soon - although he reckons it only shows anything about 20% of the time.) He's now suggesting three other tests, which don't require a blood sample: "OATS test", "Microbial GI effects test", and some kind of hair test, I think all from Biolab. Has anyone heard of these tests? Are they worth anything? I keep hearing fairly dismissive things about the accuracy of hair testing, but I can't work out whether that applies to all hair testing or just for certain things. Many thanks Wombat140

Hello - not been on this forum for a while, but I could do with some advice. I've been through several antibiotics on the advice of Dr. Goyal, the PANDAS doctor I finally managed to find, but unfortunately it hasn't done the trick. One of the big difficulties is that I have a needle phobia, and so far it hasn't proved possible to get a blood sample from me, so he's basically working by trial and error. (That reminds me, he did give a referral for a throat swab, so we ought to sort something out about that soon - although he reckons it only shows anything about 20% of the time.) He's now suggesting three other tests, which don't require a blood sample: "OATS test", "Microbial GI effects test", and some kind of hair test, I think all from Biolab. Has anyone heard of these tests? Are they worth anything? I keep hearing fairly dismissive things about the accuracy of hair testing, but I can't work out whether that applies to all hair testing or just for certain things. Many thanks, Wombat140