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Everything posted by Wombat140

  1. bws1565 : Thank you very much for answering my question, it's appreciated. That's slightly encouraging then. I think it would depend just what state my OCD is in at the time; I couldn't manage it at the moment (it's been bad the last few days), but if it settled down to what it has been for a while before that, I could manage it. It's just the question of whether being on edge about it, even though I could manage to let them do it, would invalidate the results, and what you say about your daughter suggests not. I'll look into that - it occurs to me that the local homoeopath I used to see might be able to recommend someone. Pr40: I never heard of a connection between vitamin D and fish oil. Wouldn't the connection just be that it has got it in it? Fish oil definitely does contain a lot of vitamin D. I'm a vegetarian anyway but I do take this stuff called Green Pastures Butter Oil which is supposed to have a lot of vitamin D likewise, though it's expensive. (I've been taking rather small amounts for that reason, equivalent supposedly to 500-1500 iu a day, maybe I should increase.) (It seems to be a sovereign remedy for slightly dodgy teeth, too.)
  2. If you're suspecting it might possibly be chocolate, I assume you've tried cutting out chocolate for a bit to see if that does it, before getting on to other options? Failing that, good luck!
  3. Wombat140

    New Here! Eating changes

    That does make sense - I mean, his alleged reason for not eating meat makes sense (I'm a vegetarian myself, for the same reason), but it doesn't seem to chime with the way you describe him behaving. It sounds more as if it was completely the other way around, he didn't rationally mind the idea of eating it but when he tried it it repelled him too much - which is completely backwards! Good luck with the antibiotics. (And I hope the sleep problems soon clear up too.)
  4. Wombat140

    New to tics! Advice needed!

    Well, that seems like a pretty clear inference to me. Glad you've found something, anyway! Of course that doesn't explain why she should suddenly develop this reaction to screens now; but then she has had them on and off before. I can't help with the question of what to ask the doctor myself, but I'll post on the PANDAS section of the forum (which is usually busier) to let people know about your question,. I think after those marked reactions to screens and to sugar, you needn't be shy about telling your doctor that something particular IS setting it off and asking him for tests to find out what!
  5. Well I don't have that, anyway, or not really. Glad to hear you're doing so well, I hope it continues. Do you know the answer to the question of whether the fact that I'm uncomfortable with being touched anyway would muck up the muscle testing results? Obviously if it would, then there's no point in investigating that any further!
  6. Wombat140

    23andme /MTHFR Interpretor needed

    Don't know the answer, obviously, being in Britain, but if you have any use for information on how to read the results or sites that can pick out the relevant information from your raw data, people have kindly summarised a lot of that for me recently on threads I've started so you might refer to those: http://latitudes.org/forums/index.php?showtopic=23917 latitudes.org/forums/index.php?showtopic=23983 and, first of all, to this: http://latitudes.org/forums/index.php?showtopic=3928&page=2#entry163850
  7. Hmm, that's interesting information, thanks. It's now not so much that I can't do blood, but that having finally got the hang of having blood taken, just about, it seems my doctor can't order those tests anyway. (I'll update my sig, thanks for reminding me.) Would it be worth while going private? I don't know if muscle testing would really work with me. Given that being touched tends to set my OCD off, and that my response to being "set off" is usually to violently jerk my arm or whatever is involved... I'd have expected that that would snooker things, would it? If it was possible, how would you find a good practitioner to do it? I was corresponding with a well-known PANS homoeopath a while ago (nothing came of it in the end) and she was very keen for me to have muscle testing done before we started, and I kept asking her "How do I tell who knows what they're doing - there seems to be no trade association for them", and she kept saying things like "Go with what feels right to you"! Which seems to me like no way to run a railroad! Tests are no use if I've no idea whether they're reliable or whether the person is a complete fraud and is making it up as they go along! Ha ha, I've heard "Japanese knotweed" mentioned in this context before. Is it really the same plant that we have here? If so, I can believe it kills all known germs, very little is a match for a Japanese knotweed plant once it gets going!
  8. Thanks for the quick reply, that was handy, and reminding me about the niacinamide too. (I'm currently taking 25mg niacinamide every other morning; at that time it seemed to help slightly and was the most I could take without making things worse, and trying to increase it any further has been on the back burner since then while I tried other things. I may come back round to that one.) Must go, but will get on to that. May get the liquid zinc and try it while I'm about it - I've done that before but can't remember what the answer was. Thanks again all!
  9. Dut posted while I was replying - thanks Dut, useful to know that. And I know what you mean about it being so up and down naturally that it's hard to be sure what anything is doing, mine's like that too! (hence why I was remarking on my mum and I both agreeing that it had got worse - not always the case!)
  10. Hmm, I have no idea whether I have Lyme disease (or any other infection) or not (can't get test). Food for thought, thanks. So when you say "start low and slow", I've already started so would that mean stopping the high dose and then starting again on a low dose when things have subsided? We do have some 1,000 iu D3 tablets in the house (my mum takes them) so we have the wherewithal. (I'd probably best mention it to my doctor anyway when I can next get hold of her; unilaterally changing her prescription without telling her would be an annoying thing to do!) Haha, I've never heard of that way of administering anything before but no reason why it wouldn't work! One other question for peeps in general: I bought some copper tablets - copper is supposed to be needed to break down excess dopamine - but people on here said you should always get your zinc/copper balance tested before taking copper, and I can't get that test (my doctor can't order it), so I left it. Given that I'm not *going* to have the test, and if the flimsy chain of guesswork above is correct and what's happened is excess dopamine, is there a case for trying it in spite of not having the test, or is that unsafe in some way? I don't know anything else that lowers dopamine.
  11. 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
  12. Wombat140

    IVIG study results

    Yes, the study doesn't even say that these case histories are *meant* to be a representative sample, so the fact that all of them recovered doesn't in fact tell you anything about what the overall success rate is. What it actually says is simply "12 patients with illustrative case histories were selected for this report". (And judging from a brief correspondence I had with him, Dr K is VERY pro-IVIg, to the point of largely dismissing everything else, so he probably would consider the most successful ones to be the most "illustrative" to publicise what he feels is The Treatment Everyone Needs To Know About.) Still, it does show what's possible - those are wonderful results, congratulations to all those people and their families! And it tells you that that particular dose (1.5g/kg) and protocol are capable of getting those results, too. Maybe not in all cases but it evidently can do it in some. They were from Dr K's practice, I've just spotted this line:
  13. Thanks powpow and qannie47, I've e-mailed both firms to ask whether they'll ship to this country. From what it says on the website, though, it looks as if what they look at is purely how well you metabolise the drug itself - but not whether your serotonin is actually likely to be high or low in the first place. You see the problem? Those tests could ascertain that the drug would do exactly what it does in a typical person - i.e. raise serotonin by exactly the expected amount - but, if my serotonin was actually high rather than low, that would be the very opposite of what it needed to do. Of course knowing whether you're more or less sensitive to SSRIs or likely to get side effects is useful information, but it's not what I'm most worried about. Basically, I don't want to meet the same fate as Sammy Maloney. Can anyone say anything about my original question - whether an OATs test result from two years ago is likely to be as good a guide to what my serotonin level is as I'm going to get, or whether I should have another OATs test or some other kind of test for that?
  14. 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.)
  15. Wombat140

    Five Year Old Son with Tics

    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!
  16. 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?
  17. 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!
  18. 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.)
  19. Wombat140

    Chronic Functional Abdominal Pain (CFAP)

    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.
  20. 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.
  21. Wombat140

    Chronic Functional Abdominal Pain (CFAP)

    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.
  22. 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.
  23. Wombat140

    Diet for PANDAS

    What does SCD stand for? I haven't heard of that one (unless it's a new name for something else).
  24. Wombat140

    Kind of Urgent and Need Your Help

    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.