Wombat140

The time we tried elderberry extract (Sambucol brand) it seemed to get rid of the flu pretty quickly, unless what we had was just a strain of flu that doesn't last very long; it is a bit expensive though. How's your son, TicsGoAway? Is he getting over it now? It does occur to me that they didn't HAVE Tamiflu until just a few years ago (it was a new thing when the avian flu panic happened). Maybe a lot of kids really did die of flu complications before that, I don't have the figures, but it may just be that they give Tamiflu now they have it just because they DO have it, so that they're sure they're doing everything they can, just to be on the safe side. As Chad72 mentioned, Tamiflu doesn't make as dramatically big a difference as they initially thought, anyway. I remember hearing that the manufacturers of Tamiflu and Relenza are involved in some kind of wrangle with either the British or American government over whether they misled them over how effective the drugs really were, when they sold them all those millions of doses for avian flu and swine flu at vast expense!

Oh, one thing - whether or not this just goes away on its own (small ones often do), if you ever end up discussing medication for the ADHD-type symptoms, do mention to the doctor that he's had tics. Ritalin and similar medications often set off or exacerbate tics, so doctors are cautious about prescribing them to people with any history of tics. Good luck to you!

Hi - sorry for late reply, haven't been on here for a while. I'm in UK so can't help personally I'm afraid. Have you checked the doctors thread in the PANDAS section? http://latitudes.org/forums/index.php?showtopic=5023

Hello Alice. How did you find out he was B12 deficient? I mean, I assume you couldn't have convinced a doctor to inject massive doses of B12 just because his symptoms were similar to those in those Internet articles? Or did you?

Hi HKGinger, sorry to hear you're having trouble, I hope it soon passes. I agree with Nancy, but would add that in this country they would normally recommend cognitive behaviour therapy (CBT) rather than ERP alone, it's more effective - I don't know why they always tend to say just ERP on this forum. (CBT for OCD should include ERP - that's the "behaviour" part of the name - but also other stuff, discussing the worries you're having and why they don't really make sense - that being the "cognitive" part.) I'm not sure that that's right about inositol having the same chemical effect as an SSRI; I think its mechanism is thought to be different, as far as they actually know what the mechanism of either thing is. But yes, the few studies there have been of it suggests it works about as often and as well as SSRIs, and without any side effects (except one or two upset stomachs, but everything always upsets somebody's stomach, I'd be suspicious of any study that didn't!) (People who don't respond to SSRIs may respond to inositol and vice versa.) St John's Wort is supposed to increase serotonin too, so logically it should work for OCD, but actual results seem to have been mixed. Good luck!

Thanks! Will get in touch with homoeopath and ask if she knows anyone.

Thanks, that's helpful. So that sounds like he had some kind of expertise in this area himself, to think of testing those things at all? I mean, he knew what a MTHFR mutation is, that's ahead of nine-tenths of health professionals you might see, I think! Although a lot of the other things you say he did, e.g. parasites and food sensitivities would be familiar to a lot of complementary therapy people even if they didn't have any specialist knowledge of PANS or neurodiversity stuff, so we wouldn't be starting completely from scratch even if (not much "if" about it) we can't find anyone who's familiar with this stuff. What was he besides muscle testing, I mean was he a PANDAS-specialising doctor, or a nutritionist, or what?

Welcome to the forum Alimac. May be hard to remember by now, but was there anything else that changed around the time the tics got worse? Things like a new food, a new brand of shampoo or cleaning product, new carpets or paint, anything like that - tics often, though by no means always, seem to have some connection to allergies or similar sensitivities, so if you'd been exposed to any new substance like that it could be that you happen to be allergic to it. (If you need more information about all that, you can find it in Sheila Rogers' book, "Natural Treatments for Tics & Tourette Syndrome" http://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ , or probably in the article mentioned above, too.) Are things any better yet? Good luck!

One thing has just occurred to me, it's meant for hayfever but I assume that both things are a question of inhaled particles, so it seems worth a try: HayMax Organic Pollen Barrier Balm http://haymax.biz/ It's actually just some cream that you dab around the edge of your nostrils, and the idea is that pollen, or in your case dog dandruff, literally sticks to it so it cuts down on the amount going up your nose - by about a third according to the manufacturers, which doesn't sound like enough to make a difference, but from what I've heard it does seem to work quite well for hay fever. It's cheap and easy, anyway, so you could give it a try while you look into air filters and so on, which sounds as if it would take a while to sort out. Your son's unlikely to be allergic to that, anyway, all it has in it is beeswax and sunflower oil.

By the way, bws1565, what is your practitioner actually testing for? For what the infection/allergy/other problem is, or for what you should take, or both? And would they need to have any knowledge of infection stuff, or nutrition, or ASDs/OCD/Tourette's, themselves, to know what they should be looking for? (i.e. does yours?) I just need to know what it is I'm looking for before I write to the homoeopath asking for recommendations. Thanks, Wombat140

I don't know what type of magnesium is in Natural Calm, but there is a rule of thumb that for most people, calcium citrate and (I think) ascorbate tend to cause diarrhoea, calcium carbonate the opposite, and I think it's the same for magnesium. Magnesium oxide also tends to cause diarrhoea. Although cheap and the most common kind, magnesium oxide's not much good anyway as it's only about half as well absorbed as other forms; one webpage I found from a quick Web search just now, http://www.kumc.edu/school-of-medicine/integrative-medicine/the-benefits-of-magnesium.html , implies that that's actually the reason it's bad for causing diarrhoea. The same page suggests glycinate or aspartate are among the ones less liable to cause diarrhoea. It also recommends applying it to the skin as another way around it, as you already know - either as a cream or by soaking the feet in Epsom salt solution (as silly as that sounds it's a well-known thing on here and appears to work quite efficiently!) According to other sites, an excess of magnesium, in any form, can cause diarrhoea anyway, so that may be the other explanation, simply too much at a time. Good luck and I hope your son soon starts to recover; well done with all this detective work! Wombat140

bws1565 : Thank you very much for answering my question, it's appreciated. That's slightly encouraging then. I think it would depend just what state my OCD is in at the time; I couldn't manage it at the moment (it's been bad the last few days), but if it settled down to what it has been for a while before that, I could manage it. It's just the question of whether being on edge about it, even though I could manage to let them do it, would invalidate the results, and what you say about your daughter suggests not. I'll look into that - it occurs to me that the local homoeopath I used to see might be able to recommend someone. Pr40: I never heard of a connection between vitamin D and fish oil. Wouldn't the connection just be that it has got it in it? Fish oil definitely does contain a lot of vitamin D. I'm a vegetarian anyway but I do take this stuff called Green Pastures Butter Oil which is supposed to have a lot of vitamin D likewise, though it's expensive. (I've been taking rather small amounts for that reason, equivalent supposedly to 500-1500 iu a day, maybe I should increase.) (It seems to be a sovereign remedy for slightly dodgy teeth, too.)

If you're suspecting it might possibly be chocolate, I assume you've tried cutting out chocolate for a bit to see if that does it, before getting on to other options? Failing that, good luck!

That does make sense - I mean, his alleged reason for not eating meat makes sense (I'm a vegetarian myself, for the same reason), but it doesn't seem to chime with the way you describe him behaving. It sounds more as if it was completely the other way around, he didn't rationally mind the idea of eating it but when he tried it it repelled him too much - which is completely backwards! Good luck with the antibiotics. (And I hope the sleep problems soon clear up too.)

Well, that seems like a pretty clear inference to me. Glad you've found something, anyway! Of course that doesn't explain why she should suddenly develop this reaction to screens now; but then she has had them on and off before. I can't help with the question of what to ask the doctor myself, but I'll post on the PANDAS section of the forum (which is usually busier) to let people know about your question,. I think after those marked reactions to screens and to sugar, you needn't be shy about telling your doctor that something particular IS setting it off and asking him for tests to find out what!

Well I don't have that, anyway, or not really. Glad to hear you're doing so well, I hope it continues. Do you know the answer to the question of whether the fact that I'm uncomfortable with being touched anyway would muck up the muscle testing results? Obviously if it would, then there's no point in investigating that any further!

Don't know the answer, obviously, being in Britain, but if you have any use for information on how to read the results or sites that can pick out the relevant information from your raw data, people have kindly summarised a lot of that for me recently on threads I've started so you might refer to those: http://latitudes.org/forums/index.php?showtopic=23917 latitudes.org/forums/index.php?showtopic=23983 and, first of all, to this: http://latitudes.org/forums/index.php?showtopic=3928&page=2#entry163850

Hmm, that's interesting information, thanks. It's now not so much that I can't do blood, but that having finally got the hang of having blood taken, just about, it seems my doctor can't order those tests anyway. (I'll update my sig, thanks for reminding me.) Would it be worth while going private? I don't know if muscle testing would really work with me. Given that being touched tends to set my OCD off, and that my response to being "set off" is usually to violently jerk my arm or whatever is involved... I'd have expected that that would snooker things, would it? If it was possible, how would you find a good practitioner to do it? I was corresponding with a well-known PANS homoeopath a while ago (nothing came of it in the end) and she was very keen for me to have muscle testing done before we started, and I kept asking her "How do I tell who knows what they're doing - there seems to be no trade association for them", and she kept saying things like "Go with what feels right to you"! Which seems to me like no way to run a railroad! Tests are no use if I've no idea whether they're reliable or whether the person is a complete fraud and is making it up as they go along! Ha ha, I've heard "Japanese knotweed" mentioned in this context before. Is it really the same plant that we have here? If so, I can believe it kills all known germs, very little is a match for a Japanese knotweed plant once it gets going!

Thanks for the quick reply, that was handy, and reminding me about the niacinamide too. (I'm currently taking 25mg niacinamide every other morning; at that time it seemed to help slightly and was the most I could take without making things worse, and trying to increase it any further has been on the back burner since then while I tried other things. I may come back round to that one.) Must go, but will get on to that. May get the liquid zinc and try it while I'm about it - I've done that before but can't remember what the answer was. Thanks again all!

Dut posted while I was replying - thanks Dut, useful to know that. And I know what you mean about it being so up and down naturally that it's hard to be sure what anything is doing, mine's like that too! (hence why I was remarking on my mum and I both agreeing that it had got worse - not always the case!)

Hmm, I have no idea whether I have Lyme disease (or any other infection) or not (can't get test). Food for thought, thanks. So when you say "start low and slow", I've already started so would that mean stopping the high dose and then starting again on a low dose when things have subsided? We do have some 1,000 iu D3 tablets in the house (my mum takes them) so we have the wherewithal. (I'd probably best mention it to my doctor anyway when I can next get hold of her; unilaterally changing her prescription without telling her would be an annoying thing to do!) Haha, I've never heard of that way of administering anything before but no reason why it wouldn't work! One other question for peeps in general: I bought some copper tablets - copper is supposed to be needed to break down excess dopamine - but people on here said you should always get your zinc/copper balance tested before taking copper, and I can't get that test (my doctor can't order it), so I left it. Given that I'm not *going* to have the test, and if the flimsy chain of guesswork above is correct and what's happened is excess dopamine, is there a case for trying it in spite of not having the test, or is that unsafe in some way? I don't know anything else that lowers dopamine.

Has anyone here got worse after taking vitamin D? If so, what's your advice? Was it a "worse before it gets better" thing, or just genuinely worse? I had a blood test a few weeks ago that showed I had a low serum vitamin D level (25 mcg/mol), so my doctor prescribed 20,000 iu vitamin D capsules twice a week to correct the deficiency (which works out at about 6,000 iu a day). (This is not a typo. I know that's a lot.) I took the first dose on Friday evening, and the second dose on Tuesday evening (two days ago). For the last 3-4 days, my OCD symptoms seem to have been particularly bad. So has my chronic problem of taking ages to come downstairs in the morning and taking ages to go upstairs at night. I really don't understand how that works and I'm always trying to get on top of it, but with no success at all recently; I know perfectly well that I should be going upstairs, but I can't seem to stop myself from going on and on with what I'm doing. Also, for much the same period of time, there's been a reappearance of a weird thing I get sometimes where I get kind of haunted by a daydream or story I tell myself in my head - I get completely bogged down in it and go over and over it trying to get it right or to get it to feel right; I'll sit motionless for half an hour at a time, just going over this daydream - I can't seem to let go of it until I've resolved some unspecified thing (as you can imagine, this is not helping with the lateness!) Yesterday (Wednesday) was particularly bad, and I started to wonder whether it was the vitamin D that was making things worse. And when I mentioned this to my mum she said she'd noticed it too and was thinking the same thing. And that was the day after I'd taken the second dose. (And my mum didn't know that, having lost track of the schedule.) The only thing I can find in the Heartfixer Document about what vitamin D is actually supposed to do in this context is that not having enough inhibits dopamine production. Well, the thing is, I have COMT V158M +/+, COMT H62H +/+ and MAO-A R297R +/+ mutations, which all increase dopamine production. (An OATs test two years ago suggested high dopamine, too.) So I'm wondering if I had too much dopamine already and fixing the vitamin D deficiency, without anything being done about those, might just be making matters worse? Anyway, as I say, has anyone here got worse on vitamin D and if so what's your advice? Thinking about skipping my next dose (tomorrow) and seeing if things subside at all. Do you think that's a good idea, or not? (Phoning the doctor probably wouldn't tell me anything - she doesn't know anything particular about mental illness, let alone how it's affected by vitamins, she's just my regular family doctor prescribing vitamin D because the test showed I was short of it.)

Sent.

Yes, the study doesn't even say that these case histories are *meant* to be a representative sample, so the fact that all of them recovered doesn't in fact tell you anything about what the overall success rate is. What it actually says is simply "12 patients with illustrative case histories were selected for this report". (And judging from a brief correspondence I had with him, Dr K is VERY pro-IVIg, to the point of largely dismissing everything else, so he probably would consider the most successful ones to be the most "illustrative" to publicise what he feels is The Treatment Everyone Needs To Know About.) Still, it does show what's possible - those are wonderful results, congratulations to all those people and their families! And it tells you that that particular dose (1.5g/kg) and protocol are capable of getting those results, too. Maybe not in all cases but it evidently can do it in some. They were from Dr K's practice, I've just spotted this line:

Thanks powpow and qannie47, I've e-mailed both firms to ask whether they'll ship to this country. From what it says on the website, though, it looks as if what they look at is purely how well you metabolise the drug itself - but not whether your serotonin is actually likely to be high or low in the first place. You see the problem? Those tests could ascertain that the drug would do exactly what it does in a typical person - i.e. raise serotonin by exactly the expected amount - but, if my serotonin was actually high rather than low, that would be the very opposite of what it needed to do. Of course knowing whether you're more or less sensitive to SSRIs or likely to get side effects is useful information, but it's not what I'm most worried about. Basically, I don't want to meet the same fate as Sammy Maloney. Can anyone say anything about my original question - whether an OATs test result from two years ago is likely to be as good a guide to what my serotonin level is as I'm going to get, or whether I should have another OATs test or some other kind of test for that?