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Everything posted by Wombat140

  1. 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!
  2. 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.
  3. 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!
  4. 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.)
  5. 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.
  6. 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.
  7. 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!
  8. 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!
  9. 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?
  10. 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.
  11. 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.
  12. 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.)
  13. 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!
  14. 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.)
  15. 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?
  16. 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!)
  17. 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.
  18. 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.
  19. 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!
  20. 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.
  21. 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?
  22. 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.
  23. 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
  24. 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?
  25. 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.)
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