Wombat140

All the above sound good to me. It's possible that however much you try to argue the case, he may simply have an OCD problem with taking SSRIs - I did, until very recently, and I know it would have been pretty disastrous if anyone had forced me to take them, even once. Just wanted to add a quick comment that things really started to get to me a few weeks ago, although like your son nothing was particularly worse than usual - but I'd got to the point where I was tearful and suicidal before I even got downstairs in the morning. Just on the off-chance I tried taking a B complex (not a high-dose one even, just ordinary Healthspan brand) and a 1000 mg of flaxseed oil that were lying around - I wasn't taking any of either at the time, these were my mum's - to see if it would help with anything. And if you'll credit this, within an hour or two I was feeling a lot better. I don't think the OCD got noticeably easier, I'm sorry to say, but it didn't get to me so much, and that lasted for the next 2 or 3 days without me taking another dose. May have been coincidence or placebo, who knows, but it kind of makes sense - mental activity consumes various B vitamins, that's a fact, and OCD like mine is very hard mental work all the time, so possibly I'd just exhausted my supplies in some way. I'm taking that regularly now. Obviously the testing and that that others have recommended will be better still if you can manage it - I've heard that with methylation issues the best results often require taking some B vitamins and not others, and without testing you can't tell which - but I've got a needle problem and we're still waiting for the 23andMe test.

Thanks! Have e-mailed Genomind to see if it's available to UK customers. Nancy, afraid your psychs are talking nonsense, weight gain is a known thing with SSRIs, that I do know just from looking up the drug leaflets. Paroxetine (Paxil) seems to be considered much the worst offender; a neurologist I once went to see said that if I did end up taking SSRIs, he wouldn't prescribe Paxil to a young patient because of the weight gain. It's known to happen sometimes with the others though, but Prozac is supposed to be unusual in that it more often causes weight LOSS. An Internet friend of mine says that she's hungry all the time when she's on SSRIs, so maybe it is a direct effect on metabolism.

I had that a while ago, no apparent reason (just standard sweaty smelling, not fruity or any of the odd ones mentioned in the list). Homoeopath though it might be to do with liver being under strain - stuff not being processed as completely so some of it was coming out in sweat - I don't know if this actually makes medical sense or not. He gave me Nux Vomica 6c to take every evening and it went right away. Almost only thing he's done that unequivocally worked!

Ah ****. What were the changes, in particular, please? And after how long/to what extent did they go away after stopping taking? And how long was he on it before stopping? Also has your son ever had the 23andMe DNA test done? I'm hoping very much that that could be a way I could get early warning of whether I might be one of the ones who react badly to SSRIs.

how did you do that? given that you need to give a shipping address and my parents' names, at least, will be on any method of payment we use?

I'll do it! Just have to hope to goodness that I DO have methylation issues or something else that there are ways of dealing with. I've sent them an e-mail trying to clarify why it costs so much more here and whether that's correct. Thanks everyone for the replies. I'm faint-hearted. With the state I'm in there are very few brain cells left for anything else. I'm probably just going to have to post some of my results for the great people on here to tell me what to do... those links should be useful though. Thanks again.

I've heard a lot about the 23 and Me DNA test. I'm wondering whether it would be worthwhile for me? My parents and I have tried all kinds of supplements and various antibiotics, etc. for my OCD over the years without noticeable success (see sig for details). So I suppose I'm wondering what we could do about anything the test revealed that we haven't tried already. On the other hand, maybe I've been taking the wrong things or in the wrong combinations? Guessing in the dark is so tiring. Has anyone else been in a similar situation, i.e. tried lots of supplements without success, and then got somewhere after using the 23andMe test? Also, I'm thinking about taking the plunge and trying conventional psychiatric medications. Might the 23 and Me test give me any clues as to what I might respond badly to, or need a higher or lower dose? My symptoms are so bad already that there is not much margin for error. I'm attracted to the idea because, with my needle phobia, it's almost the only test I can do! I've seen $99 mentioned as the cost of the test, but the website I've found says £125, i.e. nearly $200. Can somebody give me a link to the website they're referring to? Thanks very much, Wombat140

Nancy thanks very much for e-mail, those papers a huge help! Chemar, looked up your other postings, what a shocking story - you'd think that someone might have realised what was happening! but since he was already reacting so badly to the Haldol, can you really tell whether the Luvox made any difference?

Got reply: "Sorry don't know of anyone", so presumably he's not still practising. Just been looking at an old diary and it turns out we found him by e-mailing Suzanne Ayres who runs a PANDAS support group (Oxford area, I think). You might try that. (can find e-mail address by web search quite easy.)

Trouble for me is I'm 23 so I don't think it would be the done thing to do that! Even supposing I'm not in fact stronger than our nurse!

Hi thanks very much. Afraid brain not working well atm, can you suggest me where to conduct research? Who are SFU and Dr Storch=h? Suppose doesn't help that I've been relying on Open University online library as universal way of finding journal articles and now my degree's finished I've no longer access. Rang pharmacist (can do that for free here) but no good, hadn't even heard that SSRIs can make OCD symptoms worse if unlucky and was inclined to think my friends with OCD who'd had that must have been imagining it.

Thanks very much, glad I asked, good to know about the dose thing in advance! As for the "lasting effects" thing, I'm a bit worried because I came across a posting on the SANE forums from somebody who says the side effects DID continue for months after stopping taking them, and there was a reply saying "oh yes, I've known other people find that". http://www.sane.org.uk/support_forum/viewtopic.php?f=6&t=619 Don't really know who to ask about this. I feel as if I might not get an honest answer from a psychiatrist, even once I got to see one (bit of a waiting list here), because they'd see what a bad state I was in and gloss over any possible problems so as not to put me off. That's been the problem on some OCD forums I've used, certainly. They don't want people 'spreading alarm and despondency' - bit paternalistic - the culture is that SSRIs and CBT are The Answer for OCD and encouraging people to take them up takes priority over everything else.

Fascinating article. Have you tried the kit yet, Pr40? If so, how are you getting on?

Hi, been away on holiday and only just seen this. As luck would have it, I'm in the North West of England and I've been to a PANDAS doctor! Dr. Daniel Goyal, clinics in London, Scotland and Manchester, when I last heard. Does "environmental medicine" and nutritional stuff as well as PANDAS. Sorry to say I didn't see any benefit, despite trying all the usual antibiotics (it didn't help that we never managed to have any tests done due to needle phobia), so couldn't speak for how good he is. Can only say very nice chap to talk to, and fully understands how to handle an awkward Asperger's/OCD patient - managed a long appointment with me without setting off any kind of an OCD crisis, which was not an easy feat at the time! However, when I did a Web search just now, it seems as if his old clinic, Sincere Health, has closed down. I'll try and e-mail him and see what's happening.

I've had OCD for several years and, after trying all kinds of things without success, I'm considering taking SSRIs, but there's one question I feel I need an honest answer to first. Are they ever known to make OCD symptoms worse permanently, or otherwise cause lasting problems that continue after you've stopped taking them? If so, how rare is this? I know SSRIs sometimes make symptoms worse at first, and that if you're unlucky and they don't suit you they sometimes just make symptoms worse and stay worse until you stop taking them. If that was all, well, they say you can survive three weeks without food and three days without water. (I'm not being facetious; not long ago there was a period when my OCD actually prevented me from eating.) But if it might not necessarily clear up when I stopped taking them, then that's rather different - I don't really feel I can risk that, my OCD's so severe at the moment that any more might become unlivable. Does anyone here know whether that ever happens? If so, how rare is it? Many thanks in advance, Wombat140

I've had OCD for several years and, after trying all kinds of things without success, I'm considering taking SSRIs, but there's one question I feel I need an honest answer to first. Are they ever known to make OCD symptoms worse permanently, or otherwise cause lasting problems that continue after you've stopped taking them? If so, how rare is this? I know SSRIs sometimes make symptoms worse at first, and that if you're unlucky and they don't suit you they sometimes just make symptoms worse and stay worse until you stop taking them. If that was all, well, they say you can survive three weeks without food and three days without water. (I'm not being facetious; not long ago there was a period when my OCD actually prevented me from eating.) But if it might not necessarily clear up when I stopped taking them, then that's rather different - I don't really feel I can risk that, my OCD's so severe at the moment that any more might become unlivable. Does anyone here know whether that ever happens? If so, how rare is it? Many thanks in advance, Wombat140

Hi Yoda, welcome to the forum. I agree with what Chemar said - it's better to post on the PANDAS section of the forum if it's at all a PANDAS-related query, simply because that section is much busier; a lot of members don't even seem to notice new posts on the others for some reason, so you have a much better chance of getting a reply there.

Thanks very much everyone. Mayzoo, the capsules I've ordered are the same size so 560mg is easy, that's a relief, was afraid it was supposed to be several grams at a time or something like that! Mama2Alex, I'll see how it goes with the Zipvit brand charcoal now I've ordered it, but I'll bear the Takesumi Supreme in mind. Strangely enough, it's actually a bit cheaper than the Zipvit, if I'm adding it up correctly! Entirely possible that it might behave a bit differently, too; one of the things I came across in my project was that bamboo charcoal (like the Takesumi) adsorbs different amounts of metal than wood charcoal does, though it varied depending on conditions. (Interesting to come across this stuff in real life!!) But it's always fiddly for me to order things from America (slow and expensive postage) and there doesn't immediately seem to be a British supplier. No, no fillings at all. I'm puzzled to know what I could have got mercury from, in fact! bws1565 it's not that there is a lot of mercury in the hair, in fact very little, but the homoeopath swears that the ratios of the different metals indicate high mercury in the body, according to something he refers to as "Andy Cutler's counting method". (Noticed a few references to this person on here, so perhaps some of you know more about this than I do.)

Thanks both of you. From looking around the forum a little, charcoal is another one used as a metal binder in the same way, isn't it? I've ordered that, since that's what our usual supplement supplier happened to have, and some Vitamin C too. Found a giant list of many common supplements, posted by LLM a while ago ( http://latitudes.org/forums/index.php?showtopic=15076 ), which seems to suggest that it doesn't matter for this purpose which type of Vitamin C you use, so I just got the cheapest non-chewable they had which was slow-release tablets with a bit of zinc thrown in. (I avoid the chewables partly because additives aren't good for you, but mostly because I can't stand the taste of the "great tasting orange flavour"!) Here's the really bizarre thing, though. I finished my chemistry BSc last October, and the last thing I had to do was a kind of thesis, researching and writing up a review paper on a subject. Know what I chose for my subject? The use of charcoal to absorb heavy metals! This was before I had any idea that I might have metal poisoning myself. So I'm finding that slightly spooky, the universe is having a bit of a joke with me, I think! Anyone know what amount of activated charcoal? None of the postings I've found seem to say what dose they're using. Or if they do, they only say how many capsules, but don't actually say what size of capsules.

Hi Steph, Sorry I can't help - I'm from the UK myself - but you might do better to post this on the Tourette's or PANDAS sections of the forums. Those are by far the busiest sections and a lot of members here seem to forget to check the others.

Hi everyone, haven't been here for a while but I could do with a bit of advice again. The homoeopath I'm seeing is convinced that I have mercury poisoning - the symptoms fit and it comes up high on a hair test. (I know hair tests aren't 100% reliable but I'm bad with needles.) He's prescribed me a remedy to try and get rid of it, but adds: "Taking antioxidants during this time can be very helpful.... Vitamin C powder for example." I've been trying to order Vitamin C but have got bewildered by the number of types available - powder or tablets, ascorbic acid, calcium ascorbate or Ester-C, and so on. I'd forgotten there were so many. Does it matter which, and are there any other supplements that you'd recommend, especially with keeping any initial aggravation to a minimum? (My symptoms are so bad that there's very little room for any further aggravation!) Besides prescribed homoeopathic remedies, all I'm taking at the moment is calcium and magnesium citrate. Many thanks, Wombat140

Thanks Hope2, and I hope the doctors get back to you soon!

Just an update: I've been drinking unpasteurised milk every day for the past 2 months or so, and haven't caught anything yet! Not even minor stomach upsets. After looking into it, it seems that the regulations about hygiene for unpasteurised milk in the UK are very strict indeed - a good deal stricter than for farms that pasteurise all their milk - so it's probably not a problem. (We use Emma's Organic Dairy, who seem to be one of the best-known sources of raw milk in this country because they ship anywhere in the country, though there are plenty of local places. I recommend them, they're reliable and the milk is nice.) As for the tooth, it cleared up completely for a month, not a squeak out of it, and I cut down the milk and a couple of other things I'd been taking by half. Then a couple of weeks ago, it came back again worse than ever; I've been back on the full amount for a week but the tooth's still problematic. May just take time, but I'm going to ask a question on the website where I first heard about this.

I'd be very glad to know the answer to this myself as I can't get past my needle phobia! As regards the other thing, have you asked your son whether the shivering is like his other tics? e.g. whether he can hold it back for a bit if he tries or whether it's involuntary? I know sometimes young kids aren't able to explain these things very precisely (heck, I can't always explain them myself!), but it's worth a try. As Chemar says, if the shivering does seem to be something different from his other tics, it might be worth asking the doctor about it even if it's not bothering your son, just in case it is a symptom of something different that needs seeing to.

I would have thought (just off the top of my head) that having 100% cotton stuff wasn't that important - certainly I don't remember anyone mentioning it on here. Certainly if dust mites are a problem for your son, then preventing those is more important. Something that might be more relevant about bedding is to make sure to wash new bedding or clothes before he starts using them, as they're usually reeking of dye, fabric dressings etc., and to use unscented washing powder. Artificial fragrances really are something that's often reported as aggravating tics.