Wombat140

Do the detox things make things worse before they get better?

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?

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.

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!

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?

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.

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.

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?

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?

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.

Why were you prescribed the amantadine, did she test positive for something? Curious to know what might be grounds for trying this.

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"!

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?

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.

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.

Thank you. What is the full dose? I've heard of LDN but it falls into the OCD's prohibition on psychoactive medication. Sorry.

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

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.

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

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.)

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.

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!

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!

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?

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!