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Wombat140

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Everything posted by Wombat140

  1. Thanks Qannie. (I can't find anything called exactly "Genocept", I'm assuming you mean the Genecept test by Genomind?) But would it be any use to an ordinary family doctor who doesn't know anything about genetics? Also, how much does it COST? Maddeningly, the website doesn't say anywhere! (We don't have health insurance. Most people don't in this country as we don't usually need it.)
  2. Welcome to the forum. Agree. Very comprehensive book and good to refer to. Just wanted to say, since you're wanting something to try quickly, it seems to be generally agreed that chucking in some magnesium is always worth a try. 400 mg a day is the usual dose for an adult; the NIH recommendation seems to be no more than 110 mg a day for children under 8, but this is undoubtedly a very cautious value; hopefully other people on here will chip in? If you're using it for any length of time, you should add at least an equal amount of calcium too, as the two minerals tend to deplete each other. There are various different forms; opinions vary about which is best, but the main thing is that all other forms are better than the standard oxide or carbonate because those aren't absorbed very well so a lot of it will be wasted - but if those are all you can find they're better than nothing. Good luck, and well done making such efforts to make life easier for your son, and I hope you find a way of improving things soon!
  3. Hello everyone, sorry to be asking yet more questions but I did a forum search and still can't work this one out. I'm thinking of trying SSRIs, but would like, if possible, to get some idea of how I actually am for neurotransmitters before risking it - I want to at least minimise the risk of it turning out that I'm one of those PANS patients who actually have too much serotonin already and get much worse on SSRIs. (It's very bad at the moment and what it would be like if it gets worse doesn't bear thinking about!) I did have an OATs test done 2 years ago. The results of that say Homovanillic (HVA) 3.9 (high) Vanillylmandelic (VMA) 1.5 HVA / VMA Ratio 2.5 (high) 5-Hydroxyindoleacetic (5-HIAA) 0.37 (below average but just within normal range) Quinolinic 1.3 Kynurenic 1.9 Quinolinic / 5-HIAA Ratio 3.4 (high) Which, according to the accompanying report, means high dopamine and low-ish serotonin. What I'd like to know, please, is: given that I've already got this, do you think it's worthwhile doing the dedicated urine test for neurotransmitters that I've seen mentioned on here? Or a fresh OATs test for that matter, since that was two years ago and many attempted treatments have come and gone since then (though no massive change in symptoms, except that I think they're worse now than they were then)? (Bearing in mind also that we're paying for it ourselves - I don't know what the neurotransmitter test costs.) And how reliable/recognised are either of these tests, anyway? Many thanks, Wombat140
  4. Oh, thank you very much Mayzoo! It took a while but I'm lucky to have a really patient doctor, and I'm hoping that now I've done it once and seen for myself that nothing awful happened it'll be easier in future. (Funny how you can still need to see for yourself that it'll be OK, even if you already know it will!) It's a relief that one thing the blood test does do is temporarily solve the problem of what-to-try-next; I don't need to start on anything until I've done the iron and D as my actual doctor actually told me to do, and see where that gets me. But I'll be needing to think about what to try after that (assuming that things don't miraculously go away completely on that!). This isn't just addressed to LLM, by the way, but anyone who can answer any of these questions; I'd be grateful of any answers from anybody who's come up against these questions before. It's all so confusing, isn't it?
  5. thank you very much, LLM! I'm pretty chuffed about that, I have to say And thank you very much also for the advice. Those articles are good, just been reading them, I shall bookmark that site. The scribble on the left, if I'm understanding it correctly, seems to imply that the iron deficiency could account for the low white blood cell count too. Is that a thing, or am I misunderstanding what "WCO" means? Why do you say that that's a low lymphocyte count? The lab seems to think it's within normal range (the right-hand column of figures are the normal ranges). No, my doctor definitely can't order the immunoglobulin panel, I asked her about immune system tests and she said all she could get on her own authority was the C-reactive protein and the white blood cell count. The relevant specialist (haematologist or immunologist) could order them, I think, but I wouldn't get a referral to them unless there's some reason to think that there might be something wrong in my immune system! Catch-22! The only possibility might be to get my doctor to do another blood draw, and then to send it to a private lab, but I don't know whether that's possible - I did ask her in a letter, but she forgot to answer that bit. (I wouldn't want anyone but her or the practice nurse to take the sample, as they know me and know what they're dealing with, and I know that when I try to warn them not to do a certain thing as it sets my OCD off, they listen. I've encountered some that just respond by moving even faster and trying to jolly me through it, resulting in the screaming ab-dabs followed by me going home early without anything having got done!) Not really sure what use it would be if I did find out there was a PANDAS thing going on, anyway. I've had azithromycin, I've had Augmentin and I've had tinidazole, and none of them seemed to get things anywhere; in fact I developed a new and particularly unpleasant compulsion while I was on them. Even if I could get to the point where I could do IVIg, you can't get it here - even at your own expense - as the stuff is rationed and only available for life-threatening autoimmune conditions. No, no homocysteine test, I was quite surprised about that but I asked and it seems she can't order it and possibly our local lab doesn't even do it. Again, a private lab could presumably do it if that were possible. (And the ammonia too, though I'm possibly making too much fuss about the ammonia, it may just be that I'm not eating enough sulphur for the CBS mutation to be a big deal. I'm just vaguely suspicious of the way the sulphate test strips so far never show any change as I add more and more forbidden foods back in; I keep wondering whether there is in fact sulphite being produced but it's not getting turned into sulphate (and hence not showing on the test) because of a SUOX thing. Unfortunately I don't know my SUOX status, it's not on GeneticGenie.)
  6. I really will have to look up where exactly the vagus nerve does go, I'm constantly being surprised by the variety of things it's mentioned in connection with. Oh, my mum also wondered if they've considered migraine - apparently, in children it very often affects the stomach more than the head I used to have them once a week for a couple of years when I was about 12, though with me it was mainly vomiting but apparently it can be pains in the stomach too. It'd start with a bit of a headache and generally feeling yucky, but within a few hours it'd have stopped that and gone on to feeling sick, and then being sick. Mind you, migraine's usually described as an intermittent thing, recurring attacks every so many days or weeks, whereas you make it sound as if what your friend's daughter has is continuous? Or isn't it? If it is migraine there are quite a few medical options for treating it; or, for a lot of people, it's possible to identify particular foods that set it off, in which case avoiding those will make things a lot better and may get rid of the problem completely. The usual suspects are chocolate, citrus fruit and cheese (and red wine, but that's not going to be the culprit in this case! :-) ), and also sugar - too much sugar or sugar on an empty stomach. It can also be allergy-related in which case it could be anything, but most often it's just those things.
  7. Just to add (rather late): I expect you've tried obvious things like ibuprofen already: if the tics themselves improve after ibuprofen as well as the pain, then there may be some kind of inflammatory condition involved, such as an infection/autoimmune issue (PANDAS/PANS). Thought I'd mention that - it's kind of an unofficial preliminary test around here, though I dont know whether all kids with PANS improve on ibuprofen.
  8. May not be a complete/long term solution if it works at all, but it's always worth trying a peppermint oil capsule. We keep some in the cupboard and I take one any time I have a belly ache or feel a bit sick for some reason, they work like magic for me. Of course, it sounds like your friend's daughter's problem is on a rather different scale from ordinary random stomach-aches, but still it's worth a try, if it might be able to give her a bit of relief while they're waiting for answers. You can also get slow release ones to be taken every day, which one study found to be a pretty effective treatment for IBS, better than the current standard medical things - so they really do seem to be quite powerful stuff.
  9. If the problem's that he sticks to the diet at home but not when he goes out with friends, maybe make sure there's always something good available that he can grab straight away and take with him. (Apologies if you already do.) The incredible scones (I think you call scones biscuits in America?) from Marilyn LeBreton's recipe book would be one handy option for that - I say incredible because they're exactly like normal scones (good ones!), but they keep for a week. We ate rather a lot of those when I was trying the GF/CF diet. As for books, Luke Jackson's "A User Guide to the GC/CF Diet" (Jessica Kingsley Publishing, www.jkp.com ). It explains the basic principles of the diet in plain language, and it's also a complete hoot. (It was written by a 12-year-old with Asperger's and a weird sense of humour.) It's based on the original theory, that the diet works because of peptides from gluten and casein, so it contradicts the articles Rowingmom mentioned, but so it goes. It also has some good recipes in the back.
  10. What does SCD stand for? I haven't heard of that one (unless it's a new name for something else).
  11. 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.
  12. 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
  13. 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!
  14. 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?
  15. 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.
  16. 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!
  17. 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. :'-( )
  18. 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
  19. 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?
  20. 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!
  21. 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.
  22. 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.
  23. 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.
  24. 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.
  25. 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)?
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