Wombat140

Just to say thanks very much. Sorry I didn't reply before, by the time the board was working again I'd forgotten about it. The appointment went fine. Really nice doctor. He reckons it probably is some kind of infection response (with streptococcus being the most likely culprit). He wrote a prescription for azithromycin but said I'm not to take it until ASO and Anti-DNAse B tests have been done, as it might distort the results. I'm to take it after that whether or not the tests are positive, as he doesn't think they're all that accurate, but I think he wants them anyway for reference. Unfortunately the blood tests have had to be put off, as he was going to write a letter to our GP requesting them and it hasn't been sent and the appointment was tomorrow morning. But hopefully it won't be too long before we can get another. What I did find very encouraging was that he seemed to recognise everything - even the symptoms that don't quite match either regular OCD or TS - and said he'd cured a few cases like that before. What sticks in my mind is what my mum says he said to her before I came in. He was asking what I was thinking of doing for a living, and Mum said that with things the way they were, neither of us had really thought about it. "Oh, yes," he said, "but when she's better?" When!

Xanthan gum sometimes helps to hold baked things together if you can't use egg (or if they're gluten-free and inclined to fall apart anyway). We've got a book called "A User Guide to the GF/CF diet" (by Luke Jackson, Jessica Kingsley Publishers) that has a long list of different substitutes for egg suitable for different recipes. (I'd recommend that book to anyone. Apart from practical merits, it was written by a 12-year-old boy with Asperger's syndrome and a wacky sense of humour - I admit I sometimes read it just for fun, even though we gave up on that diet ages ago!)

EAMom - thanks for the addresses. I'd written to all of them before, asking if they knew anyone I could get to from where I live (they're all too far south), and was just a bit unnerved by the way none of them mentioned PANDAS in their replies, just said they didn't happen to know any adult psychiatrists in my area! So I was beginning to wonder if any of them really did do PANDAS. Peter Hill actually said that he thought PANDAS was usually best treated like any other form of OCD. But since I made that posting I've FOUND SOMEONE! As usual he's based in London but he does occasional clinics in Manchester, and I've got an appointment on Tuesday (shorter notice than usual, too - someone cancelled). Wish me luck :-) :-) :-) Lauren and Stephanie - thanks, that's very encouraging! I'll remember about the homoeopath, too. I did see a local homoeopath for quite a while, with entirely random effects, but then I don't think she knew a whole lot about the condition - she did her level best, but I noticed she did keep on quizzing me about my emotions, rather as if she thought that was at the bottom of it. (And it hadn't even occurred to me it might be PANDAS at that point.)

Thanks for the replies everyone. Why couldn't I "cope" with IVIg? Where do I start... but for one thing, struggle with being touched by anyone, usually can't keep it up for more than a few seconds without pulling away and jerking violently. (Just one of my meaningless OCD reactions, cannot remember if there was ever a reason). I don't think this would be conducive to getting drips in... If the OCD improved a bit on antibiotics even temporarily, though, IVIg might be a possibility. Yes, we'd be paying for any treatment out of pocket - we don't have medical insurance, few people bother with it over here as the NHS covers most things. I'm just not sure whether IVIg can be had in the UK at all. It's strictly rationed (owing to shortage of immunoglobulin) and PANDAS is down in the guidelines I found as "presumed immune-modulateed but no evidence of efficacy", the lowest priority, but I don't know whether that only applies to NHS prescribing. Do any of you know of anyone who's managed to get it in the UK? Thanks for the link about tonsillectomy, Alex, that made me feel better. Although the OCD would probably rule that out as thoroughly as IVIg; but I still feel a lot happier knowing that things other than IVIg HAVE been known to work in adults! No, I haven't tried antibiotics yet, or anything else PANDAS-related... first I have to find a doctor to prescribe them. And I'm beginning to feel that there isn't a doctor in the whole country who knows any more about it than I do...

I've gone on firing letters and e-mails at everyone I can think of, in hopes of finding a doctor with some knowledge of PANDAS within reach of where I live. I've just had a reply from one of them (Dr. Kovacevic, some of you have mentioned him) which says that "at the age of 22 the ONLY treatment that has a decent chance of success is the IVIG treatment. Anything else, SSRIs, antibiotics, psychological counseling etc. essentially has NOT shown any success and may give you a temporary relief (if any) at best." Is this true, or have any of you (or your grown-up children) had any success with just antibiotics? If not a lasting result, does it at least work temporarily? Because in my current state I'm not entirely sure I could cope with IVIg (or rather, that any doctor could cope with giving it me!) And anyway, is IVIg even available in the UK? I don't expect so on the NHS, but can it be got privately if I could find a doctor to order it? Thanks very much.

Oh, I get that a bit. Have had for the last few years - I think it's just that the tics make walking extra hard work, but I'm not sure. Still struggling to get any immune testing done (difficulty finding doctor in this country who knows anything about PANDAS!) so couldn't say what it means if anything. NB do get it looked at though, it turned out that mine was being made a lot worse because I had flat feet or something and needed special insoles. Good luck with it all!

That's a point. I can't say I recognise what you describe as far as OCD goes, but I've often heard of unaccountable aggression/tantrums/anxiety/general over-excitement as a PANDAS/PITANDS thing. I think you did mention once that she had Lyme disease, didn't you?

Yep, number for age, also it's DS for son and DD for daughter, so what you've got there is a DS20something. Took me quite a while to get the hang of it If I were you I'd write that book if only to embarrass the hospital!

Thanks for the encouragement, everyone! I've passed that on to my friend on the other forum, too. Never heard of that yeast test, Fixit. Any more information? Tpotter - staph and "viruses" (apart from Epstein-Barr which I've vaguely seen mentioned) are new to me as PITANDS culprits, and I've been trying not to think about the Lyme co-infections. (Incidentally, it turns out that the Lake District, where we spend our holidays every year, is one of the areas where Lyme disease is commoner, so that's a possibility.) I'm feeling slightly desperate at the thought of getting tests for every one of them - and the doctor might well not have a test for some of them. Do you think if we did the general "immune panel" (assuming that exists in this country) that that would spot the miscellaneous ones? Or at least spot that there WAS some kind of an infection? I'm not sure how that test works.

MomWithOCDSon, I'm encouraged to hear about your experience myself; I've been doubtful because I didn't seem to have heard of anyone being treated for PANDAS after longer than a year or two, but I make it that your son had had OCD for nearly as long as I've had it. So there must be some chance! I'd been worrying myself about whether the damage would be permanent after this length of time, but it's just occurred to me that that isn't logical anyway. Last February, for whatever reason, the symptoms were down to very little - if it never got better than that, it wouldn't be much of a problem; so my brain can't have been permanently damaged then. So I suppose we're maybe only counting from then, which comes to 18 months. Much more promising. Thanks very much to both of you, and would be glad to hear any more experiences about this.

All right, thanks Norcalmom. (And thanks for the tip about negative IgM). I just wanted to be sure of the details because I'm in Britain, so they may not use quite the same standard tests or the same names for them as in the USA. Am now waiting for an answer from a doctor I wrote to - fingers crossed!

I've just posted about PANDAS on another OCD forum, and someone asked me whether you can be too old for the treatment to help, even if the symptoms were originally caused by infection. I don't know the answer. Does anyone else? I seem to remember at least one grown-up Latitudes member saying she was being treated for PANDAS herself, but I might be imagining that. Thanks, Wombat140

Nope, none of those symptoms (if by "mycoplasma pneumonia" you mean the symptoms of it; haven't been tested for the actual infection yet). It was just an idea. Be just as glad if it's NOT Lyme disease, it sounds like a real ***** to treat. I'll remember about Infectolab (yes, good name!) though; unfortunately www.advanced-lab.com says they don't accept samples from outside the USA. What about Myc p and Epstein-Barr, please? I've seen a few mentions on here of Myc p being shown by some kind of antibody level, but I'm not clear enough about the details that I could ask for it from a doctor who didn't mention it - or be sure it was the same test if he/she did offer something.

Thanks Ozimum, that's encouraging! I'll see if he replies to the message Dr. Heyman sent him, if he doesn't in a few days I'll write to him again myself.

Don't want to speak too soon, but I think we may have found a possible PANDAS doctor. But he's about a hundred miles away, so we need to get as much done at the first visit as possible. I think I've now worked out what the usual tests for streptococcus are, so we'll know whether the ones he suggests are all right. But it seems like a good idea to get the other likely suspects done at the same time. What are the recognised tests for Lyme disease, Mycoplasma pneumoniae and Epstein-Barr virus, please? Is Epstein-Barr even relevant, or did I imagine that one? Many thanks Wombat140

Can't remember the answer to that one off-hand (never been on Prozac personally, as my wretched OCD objects to SSRIs themselves!), but if you want advice on SSRIs, best thing is to join one of the regular OCD forums.

I've seen "sx" for "symptoms" a few times, took me a while to catch on. (I do think these "-x" things are getting a bit silly! )

I may have spoken too soon there. I got a reply from another doctor yesterday - Dr. Isobel Heyman of the Maudsley - saying that she'd passed my letter on to the same Birmingham doctor, Dr. Hugh Rickard. So that suggests that he really does have something to do with PANDAS. Maybe Professor Hill does know his onions after all, though he isn't all that good at showing it! Fingers crossed...

But that makes no sense. Surely the point of taking probiotics is to replace some of the good bacteria/fungi that are being killed off? Even if the antibiotics destroy some of the probiotic bacteria, surely some will get through and that must be better than nothing. I know all the things I've read suggest taking probiotics if you're on long-term antibiotics.

Chemar - Didn't mean I had no PANDAS symptoms, only not those ones - the mood swings, the initial throat infection and, come to think of it, the "episodic" course - knew there was something else - mine go up and down but never stop completely. What I do have is severe OCD/tics which started pretty much overnight for no reason at all. Well, rather odd kind of OCD, no obsessions only compulsions. All symptoms uncannily like Sammy Maloney's, in fact, I found when I read the book recently. Dawn - OK, I can find something. Sorry to hear your daughter's having trouble again, but at least you now know something that works. Afraid I haven't any ideas about getting more antibiotics, though. Maybe if you explained, to either the GP or the paediatrician, how much things had improved while she was on the antibiotics, they might surprise you. Seems only common sense to me, although not all doctors seem to have much time for common sense. If not and you happen to be with a group practice, you could try a different GP, although I suppose then you'd have to explain again, and I wouldn't blame you for blenching at that idea! Keep at it, you'll get there. Good luck Wombat

Wrote and asked Prof. Hill whether he was recommending the Birmingham psychiatrist because he knew about PANDAS or just because he was a good psychiatrist, since it wasn't clear from the letter. Received rather peculiar answer: "You don't diagnose PANDAS. It's a process, not a condition. I think you should write to him directly. I don't think I can help any more." Doesn't he know why he recommended him? :-) In any case, I don't think any more can be expected from that quarter.

Looking through those pages, I've just realised that they all describe the most standard picture of PANDAS, emphasising the mood swings and the overt strep throat at the beginning, neither of which I've had. Is there anything handy that mentions that this isn't invariable, does anyone know? Might be a bit embarrassing going to my GP and presenting as evidence a lot of descriptions that don't match my symptoms! If not, I'll go through "Saving Sammy" and see if there's a suitable bit I could photocopy.

I'm not quite sure what you think's reassuring about it, Dawn. It isn't for me, at least - my symptoms have already proved impervious to the treatments for normal OCD and TS, so somebody who doesn't think PANDAS should have any special treatment (e.g. antibiotics) wouldn't be a lot of help! Basically he seems to be of the view that PANDAS is just one possible cause of OCD/TS and "in most cases" it doesn't make any practical difference whether it's PANDAS or not, and he advised me "not to get too hung up on it". I'm sure he means well, but as things are now, the risk of getting mixed up with a dud theory is the least of my worries.

Thanks everybody! I think some selection of those surely ought to cover it, evidence and all. The mass of assorted things under "Helpful Threads" has always made my head go round and round, so I'm grateful for someone who can find the right information in it!