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Wombat140

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Everything posted by Wombat140

  1. Anyone? How DOyou approach it when it's a word? It being a word seems to cause special difficulties in knowing what to do about getting over it, because it's kind of abstract. So how do you go about getting over a bad reaction to or bad associations with a word? They are such nasty clinging sort of associations. They cling all over me and rub at me with their sticky hands. I'm aware that this is not what associations are supposed to do. <sighs>
  2. MomWithOCDSon, that sounds so much like the way MY head's behaving right now. I's like it's created this fictional parallel version of everyhing around me, and it gets more excited about the imaginary version than the real one.
  3. 27?! That makes me with my onset at 13 feel quite mainstream. I've been told occasionally that it can't be PANS at that age. Well, somuch for that, evidently. I think there is supposed to be a reason for it in that it's supposed to be a thing that happens when the immune system isn't fully developed yet, but perhaps yo u and I just have something odd about our immune systems. I mean, genetics can get you in all kinds of ways, so maybe we have some kind of as-yet-undiscovered genetic problem with our immune system that meant that whatever it was that's supposed to have happened by then that makes you no longer susceptible to PANS reactions, hadn't. Just speculation. (It's also, I think, true that neurological Lyme disease is mostly not even about immune reacions but to do with the bacteris directly nib bling at neuron insulation, so presumably thed developed-immune-system thing wouldn't apply.) (I am literally like a house with mice chewing the wiring. :-) )
  4. Thank you for remembdering about me, Plum! I need all the help I can get with this - and on this forum, I'm getting it. You're all being a great help. IVIg is definitely a distant possibility, I'm afraid; my parents are talking about it only as a last resort if neither Amy nor the psychologist have sorted things out, and that, as I say, looks like taking a long time. And after that, it's extermely doubtful wheter we can get it - that's why it's a last resort. In this country, immunoglobulin is in short supply and so is rationed to people who seriously need it, and I doubt if any system would recognise me as needing it. PEX wouldn't have the same objection but again I don't know who'd arrange that. The only hope we can see is to contact the people at Oxford University who did that recent study on autoimmune schizophrenia, which successfully used some kind of immune treatment though we don't know whether IVIg or PEX, and ask them if they can suggest anything. Still, that's very encouraging story! (I have also heard something about new American guidelines recognising IVIg as a reasonable treatment for PANS - so perhaps that'll fractionally improve the possibility of British doctors being able to approve it for me.) The prospect of the psychologist seems to be getting further and further off. I've sort of agreed with my mum that we can contact her once I've got as far as having my follow-up phone appointment with Amy, but Amy says to do that when I've been on all the preliminary things for 2 or 3 weeks. And though I've been on most of them for much longer than that, we didn't manage to obtain the very last one until a few days ago. (I'm going to contact her secretly and remind her about that and ask if it matters.) So in the meantime, I would be ver grateful if anyone can give me any suggestions about getting over this - it's poking its nose into everything.
  5. That is a one. Plain bizarre, as well as exhausting. Well, six year olds don't do making sense anyway and when you cross that with PANDAS... Glad if she's not sp bad with it now. Somebody on another forum suggested that it might have something to do with a traumatic event - she gave the ex\ample of someone who's in a car accident and there's a cherry air freshener in the car and thereafetr they hate the smell of cherries without necessariy even knowing why. That makes a kind of sense to me, it does seem to fit the way it behaves to suggest that it's a kind of conditioned response. But I don't know what the event would have been unless it was the OCD onset itself. That was traumatic right enough, since it was the famous out-of-a-blue-sky PANS onset and I had no idea what was going on, only that I felt as if my mind was being sucked out htrough a straw every time a car went past and that everyone was telling me that there was nothing and to stop being stupid - since they had no idea what was going on either and could only think I was just play-acting for some reason! But what the connection might have been, or where that would get you, I don't know. It seems t me that the way it works is that I mean roughly the same thing by it as most people - well, I think I do - but it's the associations that are off. When I think of that word, I think of the most creepy possible images that you could connect it to, and if I think of it applying to anything my mind immediately jumps from there to those. What do you mean by ERP? The name ERP always suggests to me being faced with the thing and held down by three strong men until the screaming stops. Well, with me it really would be a case of three strong men and also it does't seem to work; I can carry on being in a state for as long as we've ever tried it and the more efforts people are making to force me to stop, the more I/it fight back. In any case, it looks like being a while until I can get to see anyone; first I haveto see the local psychologist, who assessed me a while bac and would be making the referal, the referra, to discuss her conclusions and what's the best thing to do, and she says it's a two or three week wait just to see her. In the meantime, these wrod things are giving me the runaround and getting out of control, getting mixed up wth everything - they've become my main obsession now, in the last month or two. Can anyone make any hints about how you make friends with a thing that you've developed a horror of? I've been maing tentative fforts but it's often hard to know wher to get a foothold - how to come up with any way of seeing it as anything other than terrible, and how to get it to stick once I have. By the way, here's a thing. Yes, this is the word I'm talking about (or the maion one - I have various secondarty ones too at the moment), but please, don't say it to me for exposure's' sake, as I can't cope with that at the moment.
  6. Thank you, both of you! I was thinking it was just me, and that's never a goood feeling. And if it's commonish in PANS cases, and there are a fair amount of those about, maybe that means thetre's a chance that a psychologist I see might be aware of it. Yes, mine shapeshift something awfull, too. I suspect there are underlying psychological issues, but I also suspect that they wouldn't be doing this if some mechancial fault in my brain wasn't just convinced that something must be wrong and was just using them as inspiration for what kind of terrible thing might be happening. That mae sense, sdo you think? I should upaate my signature. I'm currently on Lyme disease. We've gone back to Amy Smith and she has me on various preliminary things to try and get me in better shape before starting on antibactieral herbs. HOPEFULLY shouldn't be long now; we've had a ludicrous amount of delays trying to get hold of the last preliminary thing! Unfortuntatrely I can't take any kind of psychoactive medications because my OCD won't let me. When I've forced myself to taethem anyway, t goes into screemaing lockdown claiming that I can't know whether it's safe to do ... pretty well anything I'm trying to do ... or whethet it's just the drugs making me think it is, and I'm practically unable to move at all until enough time has passed that I can feel sure the drug is out of my system. It's really inconveniaent beause I can't even take half the standard herbs for Lyme diseas (specifially, notweed, cat's claw, skullcap and ashwaganha), because they're supposedd to have psychoactive effects as well as pyhiscal effects. Any mors tories fro olther peple would be apprecaited, esppecially if you can say anything about how you got over it.
  7. I posted something in the OCD forum. I'm just mentionng it here in case people don't see it there. (please reply there rather than here.) Sorry if this is naughty, I just don't know how many p[eope actually look at the OCD forum, it's so quiet! https://latitudes.org/forums/topic/25056-irrational-loathing-of-something-that-others-consider-normal/
  8. I was wondering if anyone here knows about a thing that I have that I've heard about very occasionally, but it seems to be very rare - a horror of a particular thing, or in my case it's a word (see Desperately need to talk to somebody - poison words), not because I think it will cause something bad to happen but in its own right - that thing just is, in itself, a horrible thing to me. And yet it's not something that anyone else considers a problem. When I try to ask people about mine, they go "But it's a nice word". Has anyone any knowledge of this and how you go about getting over it? Does anyone know of anyne who's ever recovered from this? I'm currently pinning all my hopes on seeing a psychologist, but even when that happens, I d afraid they'll never have heard of this or know what to do about it!
  9. Hi Imy3, welcome to the forum. It's horrible, isn't it? I've had episodes of thoughts like that (,mine are usually odd ones that wouldn't make sense to anyone else, but they upset me a lot). I wish I could tell you how to wave a magic wnad and make the thoughts just go away, but it doesn't work like that. Trying to force them to go away in a hurry only makes it worse, because obviously to push something away you have to pay attention to it so if you try to attack a thought you just make it bigger; you just have to let them subside in their own time. It's like trying to sweep ripples off a pond with a broom. The more you swweep the more stirred up it gets, but if you wait a while it'll subside by itself. Take courage, it doesn't necessarliy take that long, if you can manage to be patient and not fight with them too much. Try and think about good things. I don't mean make yourself only think of good things instead of these thoughts, asI just mentioned that's not possible, I just mean try and think of good things as well. That way you can crowd them out. Or at least keep oyur spiritis up until they do subside, which also means you won't be panicking and attacking the thoughts. Reading something uplifitng, or very silly, may help. It's rather like having a illness of some kind - it's misreable but you just need to make a fuss of yourself and try and keep your spirits up and wait for the sneezing to stop. (I just thought of that.) Also, music helps a lot. I think it's lie the draught up a chimney - it keeps your thoughrs going along instead of stopping and swirling around in cicles. NO, you're not an evil person, far from it - everyone makes that mistake, naturally enough. It's often said, the fact that you were alarmed by the thoughts, whatever they are, to start with, proves that you don't like the idea. (no, that doesnt mean you need to carry on being alarmen by them to be in the right - they were a false alarm, so to spea, and you know that now.) The fact that a really nasty idea occurred to you doesn't mean you're bad, it just means you're imaginative.
  10. Incidentally, how do I tell if I'm a "5 drops only" person? The book mentiones that about 1% of people with Lyme disease are hypersensitive to all outside substances and can't tolerate more than 1-5 drops of a rememdy. How do I tell if I'm one of them? I was rather suspicious as I have a history pf bad reactions to things, so I started with 5 drops (echinacea), then as nothing mucn seems to be happening, IO went up to a full odse of 1 tsp, but there didn't seem to be any difference. I later went down to 5 drops again, because things had been rallly dire, but things contiuniued much the same i.e. bad. How do I know which is right? What is "being unable to tolerate higher doses" supposed to consist of?
  11. Hmm. I could really do with some advice, if anyone has any. The latest is: In desperation, on April 10th I started taking the milk thistle again - but I didn't get a headache and the OCD didn't budge. I'm still taking it but nothing's happening. What should I do? Can anyone think what's going on? If it was indeed that it did work the first time, why isn't it working now? I suppose it's possible that it wasd a delayed reaction to another thing, not the milk thistle at all. But then, I'm still taking all the other things I was taking at that point, plus a few new ones, so why the change? An intriguing thing is that the milk thistle seeds aren't meant to do anything for the Lyme disease directly; the point of them is to help with herx reactions caused by other things, by helping to get rid of the gunk released by killing off bacteria. So if it really was the milk thistle that helped, that seems to suggest that some of the other things WERE doins something. (The other things I was taking at the time were Echinacea angustifolia, selenium and green tea extract. I'm aware that these aren't usually considered first priority herbs, by the way. there are resons for that - my OCD won't let me take a lot of the "main" ones, so I'm just taking whatever relevant herbs IO can. And I haven't dared take any directly antibacterial ones yet because I'm in such a bad way I didn't dare take the risk of a herx.) Any help would be much appreciated. I really am despearate for help for help, and the milk thistle is the only thing that I've treid since I started with the herbal things in early March that does seem to have actually made things better! In general, it's just gone slowly downhill since Istarted on the herbal treatments.
  12. But if that does the opposite of what milk thistle does (at least, you seem to think taht milk thistle does the opposite of what I should be doing), then would that make my OCD worse? The trouble is, I'd sooner have migraines than OCD! Anyone else - is there anything else that might do the same job as mlik thistle without being it?
  13. PLEASE READ - Important: please read this posting before replying to anything I post: http://latitudes.org/forums/index.php?showtopic=24834#entry186170 I've been taking milk thistle - or trying to - as part of a Lyme disease protocol, or rather as a precatuin against the possible effects of a Lyme disease rotocal. I took it for a week and within a few days I started having headaches all the time, ending with what was unmistakably one of my old familiar migraines, feeling sick and everything, though I fell asleep before I got as far as actually being sick. I didn't take the milk thistle that evening (not becaude I was suspicious but jsut because I couldn't face taking it!) Headache had gone by nect day. I didn't start the milk thistle again, and the headache didn't come back. Since then, I've tried it twice, leaving a few days in between, and each time the headache has come back within a few hours. My question is, is this some kind of detoxification reaction and will go, or am I just allergic to milk thistle? I didn't think milk thistle was supposed to have a=an effct over such a short time anyway, I swa eome say that it took about a month for the liver enzmye readings to get back t narmol if they'd been up before you started taking it. The annyoing thing is that it did seem a bit better, OCD wise, while I was taking it. I'm not allericg to ragowrt pollen. I do have CBS +/-.
  14. For the information of anyone else: I found one! www.bristolbotanicals.co.uk They stock EVERYTHING (well, pretty close). Apparently people have asked them about this and they started stocking some of the herbs that had previously been missing, specially for that. Very good to deal with, too, quick and efficient and answer e-mail inquiries very fast.
  15. You're a star, LLM. You and Rowingmom both. I've e-mailed both of those people and hopefully they'll be able to tell me where they get their supplies! Good idea about Canada too, I wouldn't have thought of that.
  16. PLEASE READ - Important: please read this posting before replying to anything I post: http://latitudes.org/forums/index.php?showtopic=24834#entry186170 Hello, just wondering whether anyone happens to know a supplier for Buhner herbs in the UK or elsewhere in Europe? The book only lists American suppliers - some of them do ship to the UK but it looks like the shipping costs can be a bit steep and possibly slow as well, so it would be handy to be able to get them from closer to home. (The book suggests just doing a Web search for the names of herbs and seeing who's cheapest. I am certainly not doing that with herbs! I was reading only the other day about a woman who bought comfrey tea off a market stall and ended up in hospital, it turned out to be foxgloves.)
  17. Do the detox things make things worse before they get better?
  18. Thank you all for being so understanding! Yes, I'll definitely put a note on any new hreads, I was thinking of doing that. And thanks Sheila for editing those posts. What you say all makes a lot of sense. Don't know what I'd do without you! I've ordered the Buhner book too, you'd expect that to have something to say about it. I'll have something to discuss with my doctor now - hope he gets the point. By the way, I tested positive for something!!!! Or sort of positive. Positive on one Lyme disease test (Elispot) and negative on the other (Western Blot, I think, haven't got the results sheet handy at the moment - I do remember it had ten bands and only one showed anything), positive on Coxsackie virus, negative on the others. I don't know... is that maybe just normal and what anyone would randomly have and has nothing to do with anything? :-( maybe not, I hope. Can anyone comment?
  19. PS: In fact, LLM, could you remove the "calming inflammation" sentence in yours, too? It wouldn't wouldn't normally even be a problem, but I had such a catastrophic reaction to Ryan's posting that it's somehow got itself attached to, that particular example of it, got itself attached to he memory and is going off like a bomb every time I see it.
  20. PLEASE READ There's something I urgently need to ask you all before I can say anyhitng else. I have to ask you, when replying to my messages, please can you not use a particular word, at all? I can't say it myself, but if you look at this link: http://disq.us/url?url=http%3A%2F%2Fthe-roleplaying-scientists.wikia.com%2Fwiki%2FHere_to_Stay%3Azca3iXPaUc0XwY9BSb818hkQbnY&cuid=4046483 , it's the sixth word on the T-shirt - just after "Elixir". I know that's a rather silly and convoluted way of getting the message across; that's OCD for you! (If you're wondering, the webpage relates to a very silly role-playing/story-telling site that I've fallen for!) And please don't say it in reply to this message! (Also, don't bother asking me why that particular word is a problem, because I don't know!) I will post this on any more threads I post, too, just to be sure, I'm not relying on everyone on the forum seeing this one, that would be silly of me. I'm sorry, I know that this is something you're absolutely not supposed to do, but after what happened last time, I really don't think it's safe for me to use this forum any more otherwise, and I really don't think we can manage to work out what to do if I can't use it; it's become absolutely indispensable to us. PLEASE don't reply by saying it deliberately in the name of exposure therapy. You have no idea how violent my reactions to that are - especially so if I've just asked the person not to. Or maybe you do have an idea, in which case I don't need to ask you; I was just frightened in case somebody did. Believe me, I run across it accidentally often enough, and it doesn't help and the results aren't pretty!
  21. PLEASE READ There's something I urgently need to ask you all before I can say anyhitng else. I have to ask you, when replying to my messages, please can you not use a particular word, at all? It's because my OCD reacts disastrously to seeing that particular word. I can't say it myself, but if you look at this link: http://disq.us/url?url=http%3A%2F%2Fthe-roleplaying-scientists.wikia.com%2Fwiki%2FHere_to_Stay%3Azca3iXPaUc0XwY9BSb818hkQbnY&cuid=4046483 , it's the sixth word on the T-shirt - just after "Elixir". I know that's a rather silly and convoluted way of getting the message across; that's OCD for you! (If you're wondering, the webpage relates to a very silly role-playing/story-telling site that I've fallen for!) And please don't say it in reply to this message! (Also, don't bother asking me why that particular word is a problem, because I don't know!) Also, Ryan, would you mind editing your previous post, please, (just remove the whole of the bit about essential oils)? That way I can read my thread without ducking and diving. Please let me know when you have. Thanks. I will post this on any more threads I post, too, just to be sure, I'm not relying on everyone on the forum seeing this one, that would be silly of me. I'm sorry, I know that this is something you're absolutely not supposed to do, but after what happened last time, I really don't think it's safe for me to use this forum any more otherwise, and I really don't think we can manage to work out what to do if I can't use it; it's become absolutely indispensable to us. (No, my family can't do it for me, because reasons, take too long to explain.) PLEASE don't reply by saying it deliberately in the name of exposure therapy. You have no idea how violent my reactions to that are - especially so if I've just asked the person not to. Or maybe you do have an idea, in which case I don't need to ask you; I was just frightened in case somebody did. Believe me, I run across it accidentally often enough, and it doesn't help and the results aren't pretty! I almost forgot to say thanks people for the replies, they're helpful. Anyone else?
  22. I'm finally having tests done! Lyme disease and variosu other oddments. Waiting for the results to come back now. I'd like to have more idea about certain things before I speak to my doctor. The thing is, things are very bad at the moment, and I don't know at all what we would do if there was a "herx". What might make it less likely? I saw a thread recently where someone's child had been being treated fairly successfully with herbs but was put on a combination of antibiotics to get rid of the last bit and got so much worse that they had to go back to the herbs. Are herbs likely to be safer, herx-wise, than antibiotics? (That's assuming that our PANS doctor actually knows anything about herbs; I've no idea.) Is starting on a lower dose of antibiotics a good idea? Or with fewer different antibiotics at once rather than introducing several together? Any help welcome. Terrified.
  23. While waiting for tests to be done, my PANS doctor prescribed me various things that are supposed to boost the immune system (colostrum, Agaricus blazii, probiotic). After I'd been taking them for a week I was considerably worse so in desperation I stopped them again. (That was a few days ago. I couldn't say whether stopping them has helped or not.) What I'd like to know is, why would "boosting the immune system" be a good thing in someone who's suspetced of having an autoimmune condition? Surely that's the exact opposite of what you should be doing? I've heard of children with very bad and refractory cases of PANS actually being put on immunosuppressants with some success. My instinctive feeling, and my mother's too, is that it doesn't make any sense, but I don't know. Can any of you give me a bit more background on this? Heard any explanations, in either direction? I need to e-mail him soon about supplements so I'd like to have more idea what I'm talking about before I do.
  24. http://www.bbc.co.uk/news/health-38220610 Interesting. Not PANS, but might get them interested? Antibodies to NMDA receptors, that's the same thing that was involved in the "Brain on Fire" case, isn't it?
  25. Hi from the UK! I don't really know what to suggest though as my issue was always OCD rather than tics (or, at least, some kind of hybrid between the two), and we've been pursuing the PANS angle for ages now so that I've forgotten what the steps were that we went through before that. I did start a thread about PANS treatment options outside the USA, if that's of any interest to you (I dare say some of them overlap): http://latitudes.org/forums/index.php?showtopic=24626 I've forgotten what the dose of magnesium would be for a 13 year old with Tourette's, can anyone else answer?
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