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Everything posted by Wombat140

  1. What does SCD stand for? I haven't heard of that one (unless it's a new name for something else).
  2. Not wishing to hijack Trinitybella's thread, but if it was herpes encephalitis would you invariably expect cold sores on lip, or could it possibly be that even if you didn't get those? Reason I ask is I don't get cold sores - well, I think I did once, but that's all - but that uncontrollable-running-around thing that Trinitybella mentioned just jumped out at me, because I do that and I've never seen it mentioned anywhere else. Any time I'm out for a walk, if I let my mind wander at all and start thinking about anything else, without thinking at all I start to run flat out, until I have to stop and catch my breath because I've run harder than I can actually handle. My mum and dad both get cold sores from time to time, but I don't. And if lysine is supposed to help, that's one thing that would be dead easy to try.
  3. I've read the papers on it myself when I was trying it, and I can only say that in the studies that have been doneon adults, there were no serious side effects even at 18 grams, so that suggests it's a pretty innocuous substance. (Couple of upset stomachs was the sum total of the adverse reactions, and everything upsets somebody's stomach - I'd be suspicious of any clinical trial that didn't report any upset stomachs!) So that suggests that, for instance, 12 grams would be safe enough even in someone smaller than that. And that, or less, is apparently quite enough for many patients. As Nancy said, start small and work up gradually (that's what you're supposed to do with inositol in any case) and take his weight as a guide to how his dose ought (maybe) to relate to an adult dose. There's a page here (by Fred Penzel, one of the well-known OCD experts) that has information about his experience with inositol in his practice and a very handy guide to how fast to increase the dose: http://www.wsps.info/index.php?option=com_content&view=article&id=70:inositol-and-ocd&catid=36:ocd-and-related-subjects-by-frederick-penzel-phd&Itemid=64
  4. I succeeded in having a blood test at last! But I'm not sure what all the results mean. As some of you'll know from my other thread (What blood tests are the first you'd try?), I'm experimenting with the mutation/methylation angle, and that was one of the things that I was hoping this could shed some light on. The other is the PANS possibility. Unfortunately, there were rather few tests I could get. Most of the things that people on here recommended to me a while ago turn out to be things my family doctor can't order without a referral from a specialist. Of the things they did test, she says they're all normal except for low red cell count and vitamin D - she's prescribed me extra iron and vitamin D herself. But I know that test results that are "normal" in ordinary contexts can still have implications for the methylation question and so on (if only by indicating that I'm in fact not short of a particular thing that you might expect me to be from my genetic results). Here's a photograph of the test results as they're too long for me to type out: The only immune-system-related tests I was able to get were C-reactive protein (which is a test for general level of immune activity) and the white blood cell count. The C-reactive protein was normal, <0.2 mg/l (normal level stated to be anything below 10) and the white blood cell count was slightly low, 3.7 x 10^9/l (normal range stated to be 4 to 11). Does that indicate that it probably isn't PANS? And what do the three vitamin results (B12, folate and D) suggest about what I should be doing about the methylation and other supplements - apart from that I should be taking D, obviously? N.B. She did say before I had it that the B12 test wasn't very good, so I don't know whether that figure is reliable. Any help very much appreciated. I just don't know how to interpret these things and would be glad of any comments from people who've been up against test results before. edit: P.S. I'm aware that some blood tests are conventionally quoted in different units here than in America. If you can't interpret any of these say so, as I do happen to know how to convert between mol/litre and g/litre units (it's a rather fiddly calculation, it varies depending on the substance in question) so I can probably do them for you!
  5. OK, so I've spoken to my doctor. Her initial reaction was that she'd only really have thought of putting me through a blood test if I wasn't eating properly and she wanted to check my nutritional status. I explained why I thought it might be relevant (PANS and the methylation question) and she seemed to take it somewhat seriously, but she seems to be authorised to order even fewer things than I expected. (One bright spot, there seems to be no problem with letting me have a single dose of Valium, so that might help with actually getting the blood.) All she's offering so far is a blood count and a general inflammatory markers test (which would probably indicate whether there was an immune reaction going on, but not what). Do you think that would even be any use, if that's al I can get? She says only the haematologist could order tests for strep antibodies, etc. And I can't see how I'd get a referral to the haematologist without any evidence that I've got anything of that nature the matter with me. Catch-22. Although if the inflammatory markers test came back unexpectedly high, maybe that would make them think it was worth looking into? The rule is that the Vitamin D test can only be done if the alkaline phosphatase level is elevated, as the Vitamin D test costs £50 so they have to ration it a bit - so that would mean taking a second sample. Doctor said that if the alkaline phosphatase level isn't high then that means the Vitamin D level isn't causing a problem. Would this apply to things like COMT mutation issues, or is it only true of more obvious Vitamin D issues like bone density? "Alkaline phosphatase" sounds like something related to bone density. I'm afraid I'm giving a rather bad impression of our health service here! Believe me, I wouldn't be without them, for any normal thing. But American doctors seem to be more willing to try anything and everything without asking too many questions, because it's your money they're spending... I'm going to send her a letter and try and haggle a bit more. Mineral levels mightn't be too difficult, surely, even for our lab - would that be relevant? Oh, and they'd probably be willing to do homocysteine, now I think of it - I'd forgotten that was relevant - I'm pretty sure they throw that one in with routine cholesterol tests. Starting from this low point, is there anything else you'd particularly think of trying to negotiate for?
  6. OK! Thanks for the suggestion 4nikki. I always heard that hypnotherapy didn't work for OCD as such, though. Has your experience been different? (It does seem odd to me, because the evidence does suggest it works a treat for phobias, which seem so close in nature to OCD.) Anyway, whether that or not, it's worth bearing in mind for the needle phobia. The trouble is I'm, or rather my OCD is, so strung out and hair-trigger reactive to EVERYTHING at the moment that I'm not sure that anyone could get near me. Nobody? Could do with knowing, I'm speaking to my GP about it tomorrow morning.
  7. Remember also that a CBT therapist wouldn't necessarily be a trained doctor in any case (I don't know whether yours was), and so might not be expected to know about clearly "physical conditions" like PANS, it'd be considered "not their area", any more than arthritis is a dentist's area. At least that's how it is over here - it tends to be very much separated between people who deal with "psychological issues" and people who deal with "physical issues"; if I was seeing a psychological therapist and came to them saying "I've come across this thing called PANS, do you think that might be involved here?", I'd expect the answer to be along the lines of "ooh I don't know, it might be I suppose, you'll have to speak to your doctor". Bad system in some ways, since it means that once your doctor's passed you on to a psychological therapist you have nobody to consider any possible physical issues that might be contributing to those same symptoms (and vice versa, an immunologist won't be able to speak for any psychological factors), but you can see how it happens. Good luck to you and your son with the CBT!
  8. Thank you all very much, that's a big help! Wow, Mayzoo's doctor was very thorough - I doubt whether I'd be able to get all of those. (Though I may ask all the same, if there's time - GP appointments are rather short over here, 20 minutes, I don't know if it's the same where you are). Another question: What would I actually do with the results? That is, for which of these would my GP (family doctor) know what the results meant and what to do with them? If she didn't, where could I get information on what the results meant I should do? Don't want to get all these tests done only to find myself with a page of meaningless numbers and no way of doing anything with them. It's a problem not having a PANDAS specialist. (And please don't say "do some research on the Internet and study how to understand them yourself, you need to be your own expert". We're beyond it. My parents and I are at the stage where we just need someone to sit us down and tell us what to do. :'-( )
  9. Update January 2016: Digging up this thread again to ask if anyone else has anything to advise? I'm possibly having another blood test done on Wednesday (February 3rd), this time through a private lab who could do some of the tests that my family doctor couldn't order last time, perhaps including some immune/infection-related ones, so I need as much idea as I can of what to ask for. I'm pretty sure we can't afford to do all the tests that Mayzoo's doctor ordered, so I really need some idea of which ones are considered the priorities, if any of you have any idea! So, in a nutshell, I have really severe OCD, developed it pretty much overnight at age 13 and had it pretty much ever since (I'm now 25). We've tried various things without success including Augmentin and tinidazole and any number of vitamin supplements. We're now trying doing supplements systematically based on a 23andMe gene test, but the results aren't making any sense. I've never been able to have a blood test done, despite many attempts, due to a needle phobia. I'm so bemused and desperate now that I'm thinking of trying again, though I haven't any particular reason to think I'll succeed. But I'd presumably need to sort out what it was supposed to be being analysed for, and who was going to do that, BEFORE having the sample taken. Please can you tell me what would be the first things you'd try and get the blood tested for if I do succeed in having any taken - whether with regard to the vitamin/methylation question, or just generally? It may be difficult to arrange any obscure tests, because unfortunately the PANDAS doctor I saw a few years ago is no longer practising and doesn't know anyone else who is - I'm in the UK. But it's worth a try. Any suggestions much appreciated. Wombat140
  10. Current situation is that I've been taking niacinamide 50 mg every other day for a bit over a week, and it's been worse than ever on days when I've taken niacinamide, and rather better than usual, able to get away with a few things and my brain let me, on non-niacin days. And then for the last couple of days it's been failing to let up on non-niacinamide days and just stayed at worse-than-ever. What would any of you make of that, in your experience?
  11. Ah? Now, that's very interesting. I'm really glad I heard that! Just been doing a bit of rummaging around the NHS Choices website, and it seems that testing for vitamin D deficiency is quite a common thing over here these days. B12 and folate, at any rate, are also listed among the fairly common tests (the one because of pernicious anaemia and the other for pregnant women, I'm guessing). The only question, then, is whether I can convince our doctor to order them for me even though the symptoms I've got aren't (as far as I know) among the symptoms they're usually ordered for. I expect she'd be willing to try it if it were up to her, she's nice and she was a bit worried that she couldn't think of anything to do. I just don't know whether a G.P. has the authority to order tests that are completely "off-label", so to speak, for a mental condition, even though they're recognised tests in themselves. I'm not saying she hasn't, though; I just don't know. Only way to find out is to ask her I suppose! (I know I should have looked at NHS Choices' website first, now I think about it. But though extensive it's very badly laid out - it's not like an encyclopedia that you can just use as a reference work and look up all the basic information about, say, vitamin D, it's more a collection of here's-our-advice-on-what-you-should-do-about-so-and-so pages; I usually only find what I'm looking for by opening all the pages that seem at least tangentially relevant, then following any likely links from them until I stumble on the info I'm looking for. So I tend to only go there once I've some reason to think there is something to find! ) If I did manage to have a blood sample taken, what would you - and anyone else here - consider the main things it should be tested for? Not just re the mutation stuff, but in general, too, for someone with a long-standing inexplicable brain problem? I'd be glad to hear as many views on this as possible, as so many of you have done the blood testing stuff whereas I know nothing about it. Throwing spaghetti and seeing what sticks is exactly what it feels like at present!
  12. No, no, no, no and no. Sorry. I just have to do the things - there is no reason why I have to do them. If I don't do them when the situation requires me to do them, my brain just screams at me harder and harder until I do. Pretty much like Tourette's, except that they're in response to particular external things rather than just random. Actually, the theory that it's all caused by anxiety seems to be going out of fashion; they're suspecting now that it's just that the ones who have thoughts associated with their compulsions (I don't) have a lot to be anxious about! Yes, those neurotransmitters involved in COMT do cover anxiety, but it seems to me they cover just about everything else, as well. I'm inclined to blame dopamine, myself. I've seen dopamine described as "the seeking response", the state of being trying to achieve a goal - and it does seem true that if you put a task in front of me, I can't leave it alone until I've finished, whether I'm supposed to be doing it or not - whether that's a compulsion, a mission in a computer game, or reading on and on when I'm supposed to be going to bed (and when I'm as eager to get to bed early as everyone else, too). I think I've posted somewhere here before about my inability to get to bed on time! Anyway, musings aside, good point about not stopping both at once. I've stopped the B12 but kept taking the niacinamide. Things did seem a little better yesterday, in places. Oh dear, I suppose if the B12 WAS the problem, then that means I don't know the status of the methylfolate! Well, I'm not getting entangled in that again until I've accounted for the niacinamide and the B12, anyway. It is, it is. Believe me, I'd LOVE to get a blood test done. But, apart from anything else, how am I going to get it? I don't think testing vitamin, homocysteine and ammonia levels are standard tests for anything in recognised medicine, are they? Our family doctor's sympathetic but I doubt if those would be among the standard tests she can order from the lab, would they? So we'd have to arrange it elsewhere somehow and I don't even know how - the PANDAS doctor I saw a few years ago is no longer practising, and he doesn't know of anyone else - and probably at my own expense, or rather, at my parents' own expense, and THEN go to the doctor's and fail to have the blood test done. I don't know. (I'm certainly not in any shape to make me any more likely to succeed than usual right now.) Thanks very much for your advice.
  13. Hi, sorry I didn't say anything before, been a bit wiped out. I've just been looking it up in the two documents (the Heartfixer one and Genetic Genie's accompanying notes). Both of them define COMT +/+ as the version that breaks down neurotransmitters more slowly - so a +/+ in Heartfixer equates to a +/+ in Genetic Genie and presumably to a -/- in Nutrahacker, which must be defining it the opposite way round (I haven't used Nutrahacker myself so don't have their accompanying notes if there are any). So you are what Heartfixer calls COMT -/- i.e. you should be able to take methyl-donor supplements without ill effects.
  14. I've hit a snag again. Took vitamin D for a week, no obvious change, so on Wednesday I added niacin - 50 mg to be taken every OTHER day. Thursday I thought things were a bit better - I was getting away with things that I wasn't supposed to be able to get away with. So this morning, Friday, I took my next dose as scheduled, and all today it's been absolutely nothing doing again. Any idea what's going on here, and what I should do? Do you reckon it's possible I might take two days to metabolise it or put it to use or something (after all, if I've dud enzymes you'd expect things to be slower, though I'm not sure whether in quite that way), and I should give it longer to work each time before taking the next dose? I'm thinking of giving it 3 days instead of 2 next time and noting the result. Also, why did you think the hydroxy-B12 couldn't be causing a problem? I mean, thinking about it, I started taking it at the same time as the methylfolate and I think I've always taken both together every time I've taken the methylfolate - so it seems to me that I've really no proof that it wasn't the hydroxy-B12 that made things worse those times and not the methylfolate at all. I mean, 1000 mcg is a lot of B12. I'm still taking the hydroxy-B12 every other day, the same day as the niacin, so this morning was actually a B12 morning as well as a niacin morning - so I'm suspicious about which of them it really was. That's if any of it was either of them, and not just random pigness.
  15. AAAAARGH... that's what they always say, but I don't have any anxiety so that doesn't get me far! No, not criticising you LLM, just the general way my condition always seems to find the most inconvenient-to-treat arrangement. Thank you very much for replying so quickly - I was getting pretty hot and bothered with all that's been happening. So trying niacin/D without being on any methylfolate does theoretically work? Thanks, that's all I needed to know. I wasn't sure if it was a "never do this before you've sorted out that, or it'll be counterproductive" thing, like doing MTHFR before CBS. And I'll start with the D before the niacin, like you said. (Haven't my results handy right now, but I seem to remember I do have a VDR thing.) I've already got both of those in the cupboard which is handy. Could be that adding methylfolate will be useful AFTER I've got settled in on the niacin - they sort of balance each other, don't they, so maybe it works both ways and I'll be better able to handle methylfolate once I've got enough niacin. No idea whether this is true, just idle speculation. Anyway the proof of the pudding is in the eating - wish me luck.
  16. Hello, sorry if you've already seen this - I posted it at the end of my other thread but as there haven't been any replies so far I got worried that perhaps nobody'd realised that it was a new question. (N.B. Please have a look at http://latitudes.org/forums/index.php?showtopic=23917, or at my sig, before you answer so you know what the situation actually is :-) ) I've tried methylfolate and hydroxyB12 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)?
  17. (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)?
  18. 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.
  19. 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
  20. 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 ).
  21. 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!
  22. 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!
  23. 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.
  24. 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
  25. 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).
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