Wombat140

(N.B. Please have a look at the thread linked at the top of this one, or at my sig, before you answer so you know what the situation actually is :-) ) I've tried yet again this time at a QUARTER of the supposed minimum daily starting level of 67mcg, i.e. 17mcg methylfolate and 250mcg hydroxyB12, taken every other day. After four days (two doses) of this, the situation seems to be that I'm getting a lot more emotional about things on the days I've taken it, but the OCD symptoms are no better. Terrible things keep happening. I suppose it's possible that I already am getting enough methylfolate, despite my mutation, since I eat a lot of whole grains and, since giving up animal products for the CBS thing, a lot of nuts, and I've heard that the folic acid in food is in the form of methylfolate. (Is that true?) Do you think it would make sense to give up on that for the time being and try the niacin, Vit D etc. (for the COMT and MAO mutations)?

Few months of "ups and downs" = permanent brain damage under these circumstances, surely? Oh well... nothing much I can do about it, I suppose! Forgot to say I did try niacinamide (50mg), didn't seem to make any difference. Yes, I have HAD the full 23andMe done (read my sig). According to that, I probably am about as much of an overmethylator as they come, and I'm taking *hydroxy*B12, not methylB12 at all, but there's no alternative to the methylfolate. Thanks very much LLM for the confirmation that stopping it for 3-5 days is a good thing to do. (I actually did start on 1000mcg of B12, but increased it after a few days simply because I realised I hadn't meant to do that. I'll stick to that in future!) I'm stopping it right now - today in fact because I delayed taking my morning dose until I heard back. I was being TOO methodical, in a way; I was determined not to go switching my dose back and forth all the time just because I was having a random bad day! In future, I have to remember to be methodical about going DOWN when indicated, too... Thanks once again for the replies everyone. I suppose I just wanted confirmation that chopping and changing like this is indeed the right thing to do. Some things you're supposed to hang on like grim death and wait to see if it gets better over time; but then B vitamins are fast, thank God.

Hello. OK so you know me, if you don't then it's about this thread http://latitudes.org/forums/index.php?showtopic=23917 . I've been on methylfolate for a bit over a week - started at 67mcg, then went up to 133mcg a few days ago. I started 1000mcg of hydroxy-B12 at the same time. I have the MTHFR mutation (albeit only a +/-), and my compulsions got noticeably worse straight after taking a standard folic acid supplement, so by all the laws this should work. Just a few days after starting it, I started an almost new compulsion that involves hitting my head. (I mean it existed before but only rarely and about one single thing now it's all over everything.) Not good. Before you start telling me not to do this - I know. Can this possibly be the methylfolate or the hydroxy-B12? Would it be a good idea to stop them for a day or a few days (if so, which - is one day enough or should it be more?) and see if it improves? I'm scared to do that because the rule with my symptoms for the last few months seems to be, they get worse when I start anything, and they get worse when I stop anything, too. Help please. Wombat140

Sorry, only just seen this. https://www.23andme.com/ You send off for a kit (i.e. sample bottle and prepaid box to send it back to the lab in). It's $99 and takes several weeks to report back, but it does give nearly all the relevant mutations (you can run the results through another website, free, to pick those out, see http://latitudes.org...789#entry180761 ).

no problem, glad to know. Once something starts working for him again, maybe he'll feel happier about taking stuff :-) Incidentally I don't know if you've looked into the methylation/DNA mutations angle at all but that's a saliva test and the treatment is mostly diet adjustments and supplements that are drops, so that'd be doable for your son (so long as his patience holds out!). If interested there are links on the second page of the Helpful Threads sticky thread, or most of the basics have come up in my recent "Need CBS advice" thread by now!

You have my sympathy! These are just a few things that occurred to me at random: If he doesn't want to take them because he doesn't think they'll work, ask him to just take them to please you, whatever he personally thinks of them. The needle thing - you can either not want to have an injection, or you can really want to, consciously, but not be able to bring yourself to do it. (I know because I'm in the second situation myself!) From the sound of it, with your son it's probably both. As far as the second thing goes, I've heard that hypnotherapy can work astonishingly well for needle phobia, in children especially (see for example http://onlinelibrary.wiley.com/doi/10.1111/j.1460-9592.2007.02224.x/abstract ; I can't find a full version available to non-subscribers unfortunately, only the abstract, though you may have better luck. I came across the full version during my degree course but no longer have access). First you'd have to convince him it's worth bothering to try, though. Feels there is no hope; I can see how that could happen after a long stint of PANDAS treatments... but I also do notice that if I'm short of B vitamins I feel even more like that - at least, taking a B complex makes me feel a lot better within a couple of hours, in that I'm able to think much more rationally about the whole thing and whether there is or is not any point based on the actual facts, rather than on how tired I am at the time. That was just an ordinary B complex with RDA levels of everything. The pill problem: There are some things you can take as liquids, would he take those? Ibuprofen is available in liquid forms. I'm currently taking 5-methylfolate and hydroxy-B12 for a MTHFR issue and those are both in drops, from http://holisticheal.com/ - they may have other things available in that form too. And there's someone over on this thread who says dark chocolate helps her son during a flare, so if that works for him then even he shouldn't object to eating chocolate, whether it "works" for the PANDAS or not! or a mug of plain cocoa would probably work too (and tastes nice). A lot of the liquid/powder supplements I take are only a drop or so of each thing, so (where they're OK to be taken at the same time of day) I tend to just mix them all into one glass of juice and drink that - solves the can't-be-bothered problem!

TVP's what most commercial vegetarian sausages and burgers are made from (the main exception is Quorn which is made from a fungus). It's also sometimes sold loose in chunks so you can add it to stews etc. as if it was meat. Tends to be a bit chewy but tastes good.

That is bad, really sorry to hear you've been having such a crisis. Are things any better yet? I don't know anything about CocoaVia - their website seems delightfully vague about how concentrated their product actually is supposed to be compared to ordinary cocoa - but if dark chocolate helps you could try him with a drink of plain cocoa, that way you'd get the same thing without sugar. Be careful to get "cocoa powder", with nothing else in it but cocoa, not "drinking chocolate" which is full of sugar (confusing, eh). I like it a lot just made up with hot water, but if your son finds it too bitter like that you can add milk. It does still have caffeine in it, of course, so don't overdo it, but a mug a day shouldn't do any harm. edit: Just noticed you asked about MTHFR. I'm in the thick of dealing with that lot myself so I can pass on a certain amount. Have you had tests done for that? The whole subject of mutations is so extremely complicated that you can't really do much with it by trial and error - there are too many interlocking mutations - if you're going to do anything from that point of view you need your child's list of mutations in front of you. Although if he's reacted badly to folic acid supplements in the past then he may have the MTHFR mutation, and if he never does well on supplements containing sulphur (they include N-acetylcysteine, garlic, turmeric and SAMe) he may have the CBS mutation. The test you need is the 23andMe DNA test, which is a saliva test so that's easy. It's $99 and takes several weeks to report back, but it does give nearly all the relevant mutations (you can run the results through another website, free, to pick those out, see http://latitudes.org/forums/index.php?showtopic=23789#entry180761 ). Good luck! Wombat140

Thank you muchly! The methylfolate and hydroxycobalamin arrived yesterday so I've made a start on them (1000 mcg B12 and for now 67mcg methylfolate, as you said). Wish me luck. I've got some 50 mg niacinamide in the cupboard in case of accidents - that is a very useful thing to know! By the way, anyone else dealing with these issues in the UK might be pleased to hear that Holistic Heal are no trouble at all to deal with - I ordered those two things online on the 20th and they arrived yesterday, quick service. They did charge a $16 (~£10) shipping fee but I've seen worse. I see your point about the test readings - it would be suspicious if they gave precisely the same reading each time - but actually the test strips are not at all precise - they only really distinguish 5 values, 0-200, 200-400, 400-800, 800-1600 and >1600. So all my readings are really saying is that it's consistently somewhere between zero and 200. All the same, I actually got suspicious enough to test them today, in case they'd somehow gone bad - I had an old jar of Epsom salts, which is magnesium sulphate, and dipped one in a solution of that. It did react to that, so that's reassuring! Lbee, from what I've read, whether to use hydroxy or methyl B12 depends simply on whether you're over- or under-methylating - methyl B12 if you haven't already got too much methyl stuff, hydroxy or adeno if it's possible you have. What has your daughter got on COMT mutations? Those are among the main things that bear on methylation (LLM explained some of that above). I've got COMT +/+ in two different places, so I'm on hydroxyB12 and being very cautious even about methylfolate (there's unfortunately no non-methyl substitute for that so you just have to be careful with the dose).

I knew there was something I'd forgotten to ask. Please can you tell me, how soon do you see (or smell!) a change in urine after you've changed something (food or supplements?) My urine sulphate test strips have been showing zero for several days. I need to know whether it really is possible to go from ~800 to ~0 in less than ten days, or whether something's wrong with the test. (As I say, the smell of my urine is not a useful guide to anything, for reasons people probably don't want to hear about.) If so, does that mean I'm ready to start on methylfolate, and/or trying out adding things back into my diet, straight away? That is very encouraging to hear. I'm sick of iffy-ness!

Bozos, bozos. I'd heard about the 2,4-D and Dicamba-resistant crops in development, but I didn't know they'd approved them. That seems very quick, unless I'm misremembering how long ago it was. You're not serious? That's barmy. Is that just in America, does anyone know, or does it happen over on this side as well? We tend to have slightly more regulations. In fact, there's talk of a complete moratorium on glyphosate over here (EU-wide) until they've looked into the recent evidence that it might be carcinogenic. But I've forgotten exactly where that's up to. The manufacturers are fighting it tooth and nail of course, that I do remember. Threatening to sue the EU for damages, and all that. Can't help thinking that this is another reason I'm glad I'm vegetarian Less to worry about! OK, so plants are sprayed too, but I'd imagine that with meat you might get tissue accumulation - like the way DDT accumulated in the bodies of birds that ate contaminated insects, and then in the bodies of birds that ate those birds, so that it got more and more concentrated the further up the food chain it went.

Aw, but I was enjoying trying out going vegan (It actually is something I've sometimes thought I should try - on moral grounds, not health particularly - but since I'm not the one that does the cooking, it wouldn't have been fair just for that.) Is finding exclusion diets fun a sign of eating disorder, or just of liking making up recipes? I'm being careful about protein, that's perfectly doable. But you may be right about fat, pr40 - occurred to me only this morning. Some of what I'm adding for protein is nuts, which have fat, but some is beans which don't that I know of. Will adjust accordingly. B vitamins, rubbish, loads of things have B vitamins, not just meat particularly, and there's all these high-dose B vitamin supplements I'm supposed to be taking as soon as I manage to sort out which ones anyway! I'll stick to the diet just for the moment, I think - thanks for the suggestion about ornithine but, well... there are reasons why producing even more urine would make life very difficult at the moment. OCD is the most embarrassing mental illness I know of. Might consider Yucca though, very temporarily. Oh I'm also taking charcoal 3 nights a week, forgot to say - apparently it's supposed to mop up some of the ammonia, though that seems a bit of a rough and ready solution. Anyway, thanks very much for the comments about the multi. It helps a lot to have confidence about exactly what happened there. As I say I stopped the multi and the boron on Friday, and I think the aggravation is finally dying down - we're back to just bad-like-it-was-before. I didn't realise avoiding folic acid was THAT important! I won't make that mistake again. I thought you weren't supposed to start methylfolate, or methylanything, until the sulphate was reasonably down? Of course it was never THAT up in the first place - was that what you had in mind? The B12's straightforward anyway, can use the hydroxy (or the adeno - thanks for clarifying that that works), just haven't got organised to get any. Mmiglio, as regards methyl folate, I'm in the same position - COMT +/+, in two places, and I think VDR Taq +/-. I only know what was in the Heartfixer document, but that says definitely that if you have that and also MTHFR C677T, you should take 5-methyl folate all the same because it's the one and only way to address the MTHFR, but use non-methyl forms of everything else (e.g. B12) to "make room" for it. Ahh it is bewildering stuff but I think I'm slowly getting it worked out, thanks to all of you!

Thanks LLM, it's great to have it "in a nutshell", tired enough at the moment that I really appreciate having the analysing done for me! Hah, could have sworn it was your daughter that was on copper. Anyway, I'm posting again because things have gone a bit wrong. I've been on a cut-down version of the Heartfixer.com regime since Monday (the 10th). I'm a vegetarian anyway, but I cut out eggs and dairy completely, except for butter and a little bit of cream with puddings for a treat, also onions, cabbage, peas, soya and raspberries (those being the only other things from Heartfixer's list that I ate); . I also started taking a multivitamin and mineral and 3mg of boron. (Molybdenum & vit. E haven't arrived yet or I'd have done those.) Thought I'd better do a thorough job so I could be sure whether it was working or not. Well, since the 13th (Wednesday) my symptoms (OCD-type stuff, see sig) have been particularly bad. Is it possible for there to be an initial aggravation of symptoms themselves on this regime, before improvements start? Heartfixer does mention "detox symptoms" but only in terms of fatigue and so on. Or could it be something to do with the supplements? The multi does contain B6 and folic acid, which you're not actually supposed to have too much of with CBS and MTHFR mutations, so I stopped that (and the boron) the day before yesterday but no let-up so far. Also very dark stools since the day I started this - I wouldn't have said "tarry-looking" like they always say in the side-effects leaflet, or as if it could be because there was blood in it - it looks more like mud - but the difference is very noticeable. Only other time I've seen it like that was after I'd been taking daily ibuprofen for a while, and I stopped that and it went away. If this is a thing, how long might it take to let up - days? Weeks? And is there any way to moderate it, e.g. by partly compromising the diet? The way it is now is really hard on my parents (and me). The other thing that's puzzling me is the urine sulphate. When I started this regime the testing strips came out at 800 mg/l or maybe a bit over (it's a bit rough and ready). Well, when I tried yesterday and today, they seemed to be showing zero. Is it possible for it to change that quickly? (in urine, at least. I know Heartfixer.com reckons it can take a while between seeing results in the urine test and seeing them in symptom improvement.)

Thanks for that remark about "coping skills", Smartyjones, that's made me feel better about myself too - I sometimes think I've got no self-discipline at all, at the moment there are loads of things I'd like to try and do and I don't want to moan, but I mostly end up collapsed in front of computer games and I do moan. But I think actually maybe I've got pretty good "coping skills", I just have a lot to cope with at the moment! I hope it all went well.

Yes, thanks v much LLM, I'm feeling the same - struggling to put all the pieces together with my head in the state it is, so a boiled-down version like that is worth its weight in gold! How much copper is your daughter using? The usual 2mg, or less, more? Haven't started the CBS round yet as not all the supplements have arrived, but will as soon as they have. I've just noticed what you said about addressing the other mutations (MTHFR, COMT and MAO) sometimes showing effects within a week. Well that is a very nice thought! :-) By the way, this is what I have on the MTHFR side of things: MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 TT -/- MTR A2756G rs1805087 AA -/- MTRR A66G rs1801394 AG +/- MTRR H595Y not found n/a not genotyped MTRR K350A rs162036 AA -/- MTRR R415T not found n/a not genotyped MTRR A664A rs1802059 AG +/- Does that constitute a MTHFR thing, or not - and if so, in what direction? Can't work out how much is enough to be important, or whether some are more important than others (I know CBS C699T is more important than CBS A360A). Too many SNPs for my limited brainpower to process.

Thanks LLM, you're a star. It's a nuisance it being that way, because I suppose you then have to keep on with the CBS stuff without knowing whether it's necessary or not. Still, there is the urine test thing - I suppose that would show whether it's working, as far as the chemistry goes, whether the symptoms have improved yet or not. I'm ++ for MAO-A and ++ for each of two kinds of COMT, so will have to look up/ask you about what to do with that in due course as I'm still not clear! It's a big relief to me to see these results, anyway, I have to say. Beats turning up negative for everything and wondering vaguely if it's supernatural, or just me being dense in some way, that with a supposedly perfectly healthy brain I'm forced to do ALL THIS RUBBISH! At least there now is something tangible to point to and hopefully do something about!

Thank you very much for the advice, both of you. pr40, when you say your son has "a strong reaction next day" to molybdenum, do you mean positive or negative? (I tend to assume the worst these days - I've just about had it up to here with "gets worse before it gets better"!) Very good point about seeing whether you actually do have a problem first. But I do mortally hate "try things out and see what works for you", because I can never TELL what works for me, in any reasonable length of time. My symptoms don't really vary fast enough to tell whether what I've eaten that day affects them or not - it's mainly of the OCD type, where things are usually ingrained and take a bit of persistence to shift even once it becomes possible to shift them; it normally takes weeks to tell whether things are better or worse. I haven't had any tests done for anything because I have a needle problem, and the smell of my urine is no guide to anything for reasons I won't go into. I *have* ordered a packet of sulphate test strips, though, and I'll see whether they actually show anything before trying anything tiresome. That's one thing I do like about this, for once there is an easy way to test whether it's making any difference, at least chemically! I did the GF/CF diet for 10 months once and didn't see any lasting change in my symptoms, though I DID, weirdly, have all the withdrawal symptoms at the beginning! Do you think that means I don't have a problem with gluten, or could it still be different if I was doing sulphur as well? (As mentioned above, blood testing isn't on the cards.) I know it's not necessarily any guide, but how long did it take for *you* to see a change? It'd be useful to have some rough idea because if I knew how long I might need to keep it up, I'd be more able to judge how strict to go with the restrictions. Did you see any actual changes in symptoms after starting to deal with the sulphur stuff, or did the results not become apparent until you'd also addressed MTHFR etc.? Just curious. I'd like something to happen now. Oh, God, how I'd like something to happen now... Thanks again!

I've got my 23andMe results back and run them through GeneticGenie.com (thanks so much to the people who recommended that website). Quite a lot showing up, but apparently if you have problems with the CBS sulphur-metabolism gene you should start by dealing with those. (I have +/- in each of two different places, which according to the Legendary Heartfixer.Com Document is enough to need dealing with). There are a few things it would be a big help if somebody would clarify for me: 1) How long does it take on the strict diet (and molybdenum etc.) before the sulphate levels come down and you can start trying adding things back in? The initial dietary recommendations are pretty extreme - I'm not sure it would be healthy to restrict protein that much for a really long time. 2) Is gluten a problem? The Heartfixer document is puzzling, it lists "Brown rice, non-gluten grains" among the things that are safe, but doesn't mention wheat or gluten on the list of things to avoid! 3) How soon would you expect to see results in terms of less symptoms (as opposed to just a change in urine test results)? 4) What's the "maintenance level" been for you? I mean, how far were you able to return to a normal-ish diet once the initial phase was over?

Actually, I've just checked a different page on Regenerus's website and that implies that they DO ship test kits overseas, or possibly do. Best thing would be to e-mail them and ask, I suppose.

I had the Doctor's Data test through a kind of middleman arrangement, via a firm called Regenerus Laboratories, who then sent the order on to Doctor's Data. The only person who had "ordered" the test was my homoeopath, who was definitely not a doctor, so they evidently aren't too fussy. I just filled in an order form on Regenerus's website, and where any of the boxes weren't applicable I put in an explanation of why, and that seemed to be fine. The results came back from Doctor's Data with Regenerus Labs listed as the referring doctor. Regenerus are only in the UK though, so probably won't be directly applicable to you, but I'm just mentioning that to show that Doctor's Data's "requirements" may not be as inflexible as they seem. I've no idea how *accurate* their testing is - the only thing that followed from it for me was that the homoeopath attempted to detox the metal buildup he said it indicated, not using anything that was specific for the exact results but a combination remedy called "Poly Metals", and the results were frankly disastrous. (He WOULD insist on using repeated and rapidly increasing doses, even though the last two times he'd done that with me had been disastrous too.) Maybe someone else knows more about that.

Hmm, depends why he did it - I mean, what his thought process was. If he did it because he was afraid that something bad would happen if he didn't, for instance, that would probably be an anxiety disorder. Whereas if, for instance, he did it because the pain distracted him from something else that was upsetting him, whether it was his feelings or just some persistent noise that he was sensitive to, that would be something different. I've never heard of a blood-sucking compulsion before, but that doesn't rule out OCD because I often do hear of OCD on topics that I've never come across before - some people's brains seem to be very inventive! (How a disorder "works" is often more important than the actual theme it's on. For instance, common forms of OCD include checking switches over and over again because you can't stop thinking "what if one is left on and the house burns down", repetitively tapping things to ward off the Devil each time you have what you think is a "wicked" thought, and repeatedly washing your hands because you can't stop being afraid that they might still not be clean enough and people might catch diseases from you. All on different subjects, but all working in the same way.)

Wasn't the question more "what are the BEST tests", rather than simply "what tests are available"? At any rate, I'd be interested in the answer to that question. I mean, taking an extreme example, Vega testing is still "available", as far as I know, but it's been tested out (I forget who, British Allergy Society or something like that) and found to be unable even to spot classical allergies that the person already knows about. It's hard to know, I suppose, unless scientific studies have been done on a particular one, but can anyone here say at least which of the tests they've tried worked at all? I mean, which tests flagged something and removing it did make a definite difference - or conversely, which tests flagged a lot of things but removing them turned out to make no difference (false positives) or didn't flag things that it turned out were a problem (false negatives). Though of course you can get perfectly fair "false negatives" if it's a type of allergy that that test isn't intended to detect, e.g. IgG allergies on an IgE test. Would be interested to hear anything about this, please. Apart from anything else, there's an increasing number of things my mum can't eat because she's not sure whether they upset her stomach, so it would be great if there was any way of finding out which really were to blame!

Hello, did you see the SSRI thread I started recently? Somebody gave me some detailed instructions about what constitutes a "low dose" and slow enough increase for a patient with PANDAS. Worth taking a look at. I did some looking up and confirmed that they fall into two groups - ones that conventionally start at 20 mg (fluoxetine/Prozac, paroxetine/Paxil, citalopram) and ones that normally start at 50 mg (sertraline/Zoloft, fluvoxamine/Luvox). For the 20 mg ones, if it's PANDAS and you're playing it really safe you start at 2 mg and for the 50 mg ones like Luvox, 12.5 mg (again that's the really careful dose, some PANDAS kids get away with starting at 25 mg without side effects, but some find it too much.)

Well, I certainly can't see any of the major drug companies funding replications, I think each one has an SSRI of its own at the moment. And it's surprising (and rather shocking) how much of research funding DOES seem to involve them; some studies are directly done by them, in-house, but then there are all the researchers who are supposedly working on their own but their academic fellowship is somehow part-funded by a drug company so they daren't upset them; and then even if a researcher isn't funded by a drug company at the time, they may do work for them at other times, so they can't upset them too much or they'll never get a contract for them again. Doesn't leave many. By the way, jsut wanted to let people know that I e-mailed Genomind but apparently they can't ship outside the US because regulations. So it'll have to be 23andMe - I don't know how 23andMe get round these regulations! The annoying thing about that is that 23andMe say you may have to wait several weeks to get your results. (I don't know why, when it's all supposed to be automated and Genomind offer results within 3-5 day!) Can anyone tell me whether it does usually take that long, or whether they're just covering themselves?

It's not really. Biofeedback is where you watch a readout of some physiological measurement, as it might be heart rate or blood pressure or a particular electrical rhythm somewhere in the brain, and train yourself to control it yourself. From the description on their website, SCENAR seems to involve applying a small external electrical current, so more like a TENS machine - the only thing it has in common with biofeedback is that it monitors skin resistance with a sensor, in this case not to show the patient but to automatically adjust the frequency of the current to supposedly match what's needed (regular TENS just uses a single frequency, I think, so it's a bit of a one-trick pony). That's not to say it won't work, of course, in fact I'm rather intrigued. Anyone had results with this? (for TS, OCD or anything else!)