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Wombat140

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Everything posted by Wombat140

  1. I keep getting a kind of peppery taste in my mouth as if I've been eating spicy food (I haven't). And I keep feeling a rather similar way in the rest of me - overheated, grubby, stuffy - when I've been doing the slightest exercise, or even when I haven't, and I also can't eat when I'm feeling like that, I feel kind of sick. When I once get like that I have to have a wash in cold water to get rid of it, just standing in the cold will not shift it. It's less like actually being too hot, I suppose, more like a grubby residue that's left after being too hot has dried up, if that makes any sense. Does anyone else get this, and is it associated with anything particular? I've sometimes wondered if it has womething to do with adrenaline/cortisol, because it often happens when I'm reading something exciting or playing vidoe games. But that's just a guess.
  2. Wombat140

    Desperate for help in PA

    The neurologist might be assuming that you just need to use antibiotics in the usual way for an infection, i.e. give them for a short time and the infection is then dead and stays dead. Have you tried to get it across to her that in PANDAS cases you often need to continue the antibiotics long-term for some reason (like months or a year), as with rheumatic fever, so just carrying on with the antibiotics for the moment might be all she needs to do? (Did you know that yourself?) Or is it that you've told her that but she doesn't believe you? Have you read a book called "Saving Sammy"? You might show her that, or the relevant bits of it, it discusses that.
  3. Why were you prescribed the amantadine, did she test positive for something? Curious to know what might be grounds for trying this.
  4. Wombat140

    Overheating and peppery taste

    Thanks but again this seems to be talking about too little adrenaline, rather than too much? Surely what's good for too little must be bad for too much? Or does that not make sense? Also, if we're talking about the same product (searching for "cytozyme" turned up a few different things, but mostly not related to adrenaline), it seems to be an extract of calves' adrenal gland. So is that like providing adrenaline artificially? like thyroxine for thyroid deficiency? If so, hardly a case of "can't do any harm"!
  5. Wombat140

    Blood tests

    I really haven't a clue, the only theory that I can come up (aside from the usual "it's psychological", which is always possible but doesn't explain why blood tests particularly) is that drawing off some blood literally relieves the pressure! (inflammation etc.) But then, I've also heard that it's a pretty quick process for blood pressure to be restored after some has been lost, so I'm not sure that it would make sense for the effect to last all day. (Although it might - there might be something more complicated going on, like maybe the drop in blood pressure triggers some other chemical shift which takes longer to revert when the pressure goes back to normal.) Can anyone else come up with anything? I'm very curious. Incidentally what you said about it being really easy to get blood from your daughter rang a bell with me because my doctor says that about me, too. But I don't know whether the same aplies to other people. Do other people's kids (especially ones who have that reaction to blood tests) have that, or not?
  6. Wombat140

    Question on Pandas symptom presentation

    I feel the same - the fact that it's always thre (although it does go up and down, but it's always very much there) makes me feel that it can't be PANS. That about it being relater to age seems as if it could partly make sense of it. How old are you? I'm 26 and developed these symptoms when I was 13.
  7. Wombat140

    Overheating and peppery taste

    Just coming back to this, because it's really being a pain at the moment: mine is the opposite of that, really - I hate spicy food and I feel as if I've been eating it when I haven't. So would that sound like too MUCH adrenaline, and what would you do about that? I'm pretty sure now that it is adrenaline, because I've reached a point of being able to defy my OCD directly so I'm in a state of high stress almost constantly and the burning feeling is almost continuous. As for looking into Lyme disease, I'm trying, but we've been having terrible trouble finding doctors, Found someone likely now, though, waitin to hear from him.
  8. Can Naproxen work when ibuprofen doesn't? And what dose are you using? I ask because things are really bad. I'm waiting to hear from a PANS specialist about arrangin tests and then treatment, but I'm not sure I'm going to be able to survive that long. I was wondering about asking my GP if she could prescribe me naproxen or something similar. Would that work, and if so, how much would she need to use (per kg and all that)? I can't take psychiatric medication owing t o my
  9. Thank you. What is the full dose? I've heard of LDN but it falls into the OCD's prohibition on psychoactive medication. Sorry.
  10. We're at our wits' end to find anyone who can treat me - we'd had high hopes of Amy Smith in California but have been unable to get any reply to our calls and e-mails so far. Who do all of you know who will treat PANS in adults? And who's willing to do long-distance consultations? Please name as many of each as you can!! My family doctor is willing to take any blood samples that are needed, write prescriptions on the specialist's instructions (so long as they're not for things that she, at her level of seniority, isn't authorised to prescribe - I don't know how likely that is to be a problem) and be responsible for keeping an eye on my general physical state. I know that that's the eminently sensible-sounding arrangement Amy Smith follows for long-distance patients, but no sooner had we established that than she went incommunicado on us. By the way, if we can find such a person, do you happen to know if there are any particular difficulties to be dealt with in being treated by a doctor in another country? We're in the UK and I know there don't yet seem to be many PANS specialists outside the USA. Thank you all very much in advance, Wombat140
  11. Wombat140

    Looking for help.

    How odd. Are there any differences between the brands? Like a different form of magnesium? Just curious.
  12. Wombat140

    Aug/September Tics

    Can you get out of the flu shots next time, if you think they might be causing a problem? At least it's worth trying once to see if it makes a difference. (Over here, I don't think they're given to schoolchildren as a standard thing, only old people and people with existing illnesses. So it doesn't seem that it'd be dangerous for him not to have it.)
  13. Yes, I've heard about the Amy project! I didn't know it was as many as 27 though. Can you tell me, are any of those in the North of England? I was wondering whether, if some of us are, it might be possible to persuade her to pay a visit to this part of the country, rather than stay in London the whole time (which is where I'm told she'll be staying)? We could arrange to pay fares/organise transport for her and so on if it would help. You see, it's not going to be possible for me to get down to London. I'm not getting any medication at all, because things have ground to a halt. Amy says she legally can't prescribe medications or order tests herself, directly, without having met me. So she would have to do it through another doctor here who would prescribe things on her advice. But my GP says she can't order tests unless she can point to somebody registered in this country she's working with who is qualified to interpret them. So we have an impasse.
  14. I see your point, but it took us long enough to get this GP up to speed with what exactly my problems were and what PANS was, from scratch - I can't even think about the idea of starting all over again. Besides, as I keep I don't think it's a case of not willing, I'm pretty sure she just is genuinely convinced that she's not allowed to do this. In which case if we tried another GP we might find the same with them. We've written to her now though and hopefully we'll manage to convince her that it's legal!
  15. Most of the well-known doctors who deal with PANS seem to be in the USA. I've seen other members on here from Britain and other countries. How are you all getting on? I thought it would be good to have a big thread where we could all discuss the options, like with the PANDAS in Adults thread. I've just started long-distance consultations by phone with Amy Smith, a nurse practitioner in California. Apparently she's made a speciality of PANS for some years and I've seen her recommended by several people. The idea is that she's not allowed to prescribe herself without having seen me in person, but she can consult with a local GP and recommend things which the GP can then write the prescriptions for, if he/she approves. We're still trying to arrange exactly how that'll work out, so far - my GP is willing in principle but she's never done such an arrangement before and sounds rather doubtful about how she'd go about it. Also, there seem to be limits to what tests a GP has the authority to order, and we can only hope that the ones Amy wants will turn out to be among them. Has anyone else tried such an arrangement? Any advice, if so? Two other useful bits of information I've come across: Biolab ( www.biolab.co.uk ) and The Doctors' Lab ( www.tdlpathology.com ) in London are able to run PANS-related tests on blood samples, if your local practice don't know where to get them done. The PANDAS Network site have a list of support groups and volunteer contacts in different areas at http://www.pandasnetwork.org/research-resources/support-groups/ ; scroll down to the bottom of the page and you'll find ones for outside the USA. I've found these e-mail addresses invaluable when there's a UK-specific question I simply can't find answers to anywhere else - that's who gave me the information about the testing labs.
  16. Wombat140

    a message of hope

    That sounds terrible, you all have my sympathy. Glad if some things are helping. Can I ask, how DO you find out what throws the immune system - how did you know that that was what had happened with the ibuprofen? Sounds like something we should know!
  17. Thanks! Hmm. Well you see our pandas "doc" (Amy) can't order the tests, because she hasn't met me and apparently that rules it out, you can't legally prescribe medicines or order tests unless you'e met the patient at least once - at least that's what she seems to think. So we have to find some way that oru GP can order them. I did hear from somebody else though (in the UK) who does seem to reckon that it's legal for any doctor to order any test they want to, and it's up to them to decide whether they think they can interpret/make use of it. So I'll let her know that; it's possible someone just told her the wrong thing. Fingers crossed! By the way, how does your GP offer alternatives to expensive tests? I mean, how would they know what are suitable alternatives, do they know something about PANS themselves?
  18. Ah, well, thank you very much for trying. It's not about whether the GP "can refuse" - at least I don't think so; she seems to want to give it a try, but I have to convince her that she's *allowed* to do this. Facebook: Good thought about false name but I simply daren't join Facebook, anyway, for reasons above - I don't trust myself and I know from experience that I'm right not to trust myself, it's no good trying to kid myself that it wouldn't be a disaster because it actually would. Amy did in fact give me e-mail addresses for a couple of other parents in the UK who've worked with her, and I've been asking them and they've been able to tell me a few things that might be helpful - so I do have something. Neurologist: Not paediatric, I'm grown up. How would a neurologist help? I actually did see a couple of neurologists the last time I was trying to get treatment for PANS, they'd both heard of PANDAS but didn't know much more about it than that and said they couldn't really suggest anything. Do you think they might be able to prescribe the tests and things, or something? I'd been thinking that they wouldn't be able to, because all the tests and medications and things relate to immunology or germs, not neurology, so it wouldn't be their department any more than my GP's. Do you think I might be mistaken on that one? Have you or someone else actually had these kind of tests ordered by a neurologist (who isn't also something in infectious diseases/immunology)? By the way I've only just spotted that you're a new poster. Welcome to the forum and thank you so much for coming to my rescue!
  19. I'm so sorry, I'm not on Facebook, everyone keeps referring me to Facebook (though I think this is the first time I've heard of there being a UK-specific group) but I simply daren't join. I'm terrible about getting addicited to forums and such, even normal forums, it causes serious trouble in our household me holding everything up by going on an hour or more later than I mean to on forums, and of course Facebook is specifically *designed* to manipulate you into spending as much time as possible! Plus not private and all that of course. You couldn't possibly very kindly ask them a question for me, and pass on any useful replies, could you? It would be a great help. I've got some specific questions at the moment. 1. Our GP feels she needs to know more about Amy's medical qualifications - just "nurse practitioner" doesn't seem to be enough to satisfy her on this point. (She says American qualifications aren't exactly like British ones, in any case.) We have asked Amy about this but she doesn't seem prepared to add anything. How can we sort this out? Any ideas? 2. Our GP says that she can't order tests that she wouldn't know how to interpret (i.e. most of those that Amy has suggested). Our idea, of course, was that Amy should be sent the test results to interpret. We can't find out from our GP whether the problem is A: that she doesn't trust Amy's expertise because of the qualifications question, or B: that she's actually forbidden to do so by regulations anyway, i.e. that if Amy's the one who can do the interpreting then the regulations require Amy to be the one who orders. 3. Even if we did manage to get beyond the testing stage, presumably our GP would also have objections about the prescribing she would have to do on Amy's advice (would she, in fact, be allowed to do it by the regulations? - we just aren't clear on this). I think (she's never exactly confirmed this, but I think) that what's on her mind is that she's not in the least qualified herself to pronounce on any of this, so by experimenting with this stuff she'd be risking getting into huge official trouble, even if everything goes fine. They're so tightly regulated these days. So what we mainly need is some kind of assurance that Amy is demonstrably legit and that it is legal for her to work with her in this way, and we need to be very clear about all the facts about this. What I need to know is, I suppose, has anyone else working with Amy (or any other practitioner) without having met her in person been able to do any of these things, so that if so, I know that it's allowed? P.S. We're in Lancashire, if that helps.
  20. Wombat140

    Gene Mutation and Immune Dysfunction

    Fascinating (and I love the name of that website, only just noticed it! :-D )
  21. Wombat140

    a message of hope

    I'm never sure why this cheers people up.
  22. Wombat140

    Aug/September Tics

    Off-topic, but just want to say that there's a thread of gluten-free diet recipes in the "Diet and Gastrointestinal" section of this forum, if you want them.
  23. We have a problem. Amy Smith's recommended a lot of tests (the usual things like ASO and the Igenex Lyme disease test). She contacted my GP to ask her to order them (Amy can't legally give the order herself because she hasn't met me.) But my GP says that most of those "aren't available to her as a primary care practitioner". Has anyone else been in this position? If so, did you find any way to deal with it? PLEASE, PLEASE ANSWER, even if you only have something tangentially relevant or an idea. I feel like we're totally on our wn.
  24. Wombat140

    Migraines during flares?

    I used to haev migraines and they stopped shortly before the PANDAS-like symptoms developed. They've been reappearing recently though. Which, of course, is all completely different and not a lot of help.
  25. Wombat140

    Our experience with Repreeve

    How's it going vvny?
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