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Wombat140

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  1. A lot of the time awful things happen to me and my family that I can't talk to anyone about because I can't think of anyone else I could possibly explain them to. (One's happened just now.) Is it OK tto rant in the main forum? Or would you rather people didn't? Wombat140
  2. OK, thanks for the ideas Bobh. Well, you say it's a good idea to do the "easy" thing first but, conversely, I was secretly desperately hoping that this is NOT a good idea, because of PANS issues. Getting this bookcase out will involve most of my most precious posessions being moved (it's floor to ceiling, filled to the gunwales, and things are stored in the gap between it and the end of my bed), and I have serious OCD issues about getting things out, putting things away, and anyone else moving anything of mine, so thithis is going to push me to the absolute limit. (And, consequently, everyone else in the house too - you probably know what it's like when a PANDA is under strain). Is there anyone here who knows about mould? How long is long enough for things to disperse? An afternoon, two days, more?
  3. Hello everyone, Wondering if you can help me on a question, please. I have PANS-type issues which are curently being treated as Lyme disease. There's a fair bit of mould down the back of a very large bookcase in my bedroom and my dad is keen to gget the bookcase out and clean it all out just in case. Now, I'm doubtful about this plan because I'm convinced I've seen somewhere that embarking on large-scale mould removals, thuis presumably kicking up a lot of spores etc., BEFORE any other kind of treatment has been done, is a bad idea. I have NOT had any treatment for mould issues, or indeed any tests; Dad just thinks it would be a good idea to do the cleaning first and see if irt helps. I can't find where I found that though; I've got thtr book "Surviving Mold" [sic] but Ritchie Shoemaker but if it's in there I can't find it. Any opinions? Thanks, Wombat
  4. Herx, Lyme, info please? help?

    *smacks head* Amy said that! But I was having an OCD attactk over something else she said about so,ething else and it dfrove it clean out of my head until now! Will get immediately, well, noit immediatel because it's 5:53 on a sunday and not get because my dad will have to go to the shops fpr me. See what I mean anyho :-D
  5. OK, so I'm on herbal thinhs for Lyme (Amy Smith's my practgiton and having waht Amy thinks is a herx - new and nasty compulsions, fatigue, creaky joints. Amy asked me to come down to doing the herbal things only Mon, Wd&Fri && just the detox things the other days. I've been doing that a week. Still bad. My mum keeps asing me to "go om Latitudrs and find out about herxes". When I ask her find out what she waves her hands and says I don't know. She has Mercurry im Pisces and can't help it. One thing she doers mean is how long do thy last - I should know that, I've been usign this forim long enough, but I can't remember. NOt really capable of doing the amount of searching and teading up requireed for a request as sweepim as "find out about herxes". If any kind poerson could help uz out by giving ,me a quick idito's guid it would really hhhe!
  6. Treatments for Lyme

    Is "botanical medicine" the same as "herbal medicine"? Because if so I think you'll find that THAT's a topic that could go on for ever! If you do a search for, say, "Lyme herb" on this forum you'll probably find lots of stuff, bedsides whetatver comes up in responmse to this thread. As for "German biologicals", not too usre what you mean but is that anything to do with Pekana Herbals of Germany? I've beem taking a couple of their things for a few months now on my practitioner's orders but can't really tell whether they're helping or not (I'm on a lot of things, anyway); all I c an say for sure about Pekana if that they're an absoulte swine to order things from!
  7. Supplement substitute for IVIG

    Any good? And has anyone experienced herxes/side effects with it same as with real IVIg? I'm very interested by this because if the current herbal treatments don't cut it I may need IVIg myself, and unless the guidelines in this country change drastically I haven't a snowball's chance in a supernaova of getting it. (I'ts not, as far as I can tell, a matter off going private or not going private - the stuff itself is in short supply and rationed to people who have conditions that are recognised as critically needing it. Recognised being the operative word here.)
  8. Bullseye Rash, Lyme and New Tics

    Hmm, well, I get the impression that GPs tend to have a standard checklist of things that you automatically try or test for if there's a certain symptom. (For instance, one of the rules of thumb around here seems to be, in the event of any persistent digestive symptom at all, start by trying proton-pump-inhibitor acid blockers just on the off-chance, whthter it makes any sense or not.) Testing for leukaemia suinds to me like something that she always does if somebody's blood count goes beyond certain limits. It would make senmse in general, and it's right of her to check, but in the case of a kid who is known to have a disease that messes with your immune system and white b lood count, well, it seems to me that you don't really need any other explanations. I'm not sure about neutrophils specifically, but Lyme disease definitely can lower white blood cell counts; it's a survival mechanism, the bacteria actively swithc off parts of the immune system to reduce their chances of getting caught. Very clever, but not helpful! In fact, Lyme specialists often expect to see white blood cell and antibody counts go UP once the treatment starts to work, because the bacteria are weakening and have stopped interfering with them. (A rather back-to-front situation, where more antibodies to Lyme disease showing up on the test means that the infection's getting weaker!) I had low white cell counts myself the last two times I has blood counts done, but I was low on iron too so my GP wrote it off as due to that without needing to accuse me of having leukaemia. Anyone who can remember the details better, or where neutrophils fit in, back me up on this? P.S. Anyway, I'm very glad to hera that the ticcing has stopped, and without you having to stop the treatment completely! Good luck!
  9. Diet...

    Idea that occurs to me is that you might have been unlucky and he might actually not have an intolerance to wheat, corn, etc, but does have one to to one of the things he's been eating more of instead e.g. pork or almonds, and that's why he gets worse. Worth asking naturopath maybe. You can get worse-before-it-gets-better reactions with the strict gluten-free-casein-free diet, allegedly, because it's actually withdrwarl symptoms from opioidlike substances that are produced. I've never heard of worse-before-it-gets-better reactions to any other ind of eleimination diet, though, that I can remember.
  10. PANDAS doctors in the UK?

    Ta v much have you got the "Your Child has Changed" booklet from this site, if not, get it and also print a copy to show the GP and leave with them, that's what we did, it's a good summary of the whole thing and what the treatment/testing options are for a GP who hasn't encoutered PANS before; it's a good ten quid's worth.
  11. PANDAS doctors in the UK?

    Nope. Or rather, we did find one, Daniel Goyal, but he's closed his clinic since then. I didn't get anywhere o his treatmnts, but we may have been barking up the wrong tree - we hadn't managed to get testing done at the tome owing t needle phobia, we've managed to have it done rececnet and it seems as is if it may be :Lyme dises rather than, or as well as, PANDAS. I'm now "seeing" Amy Smith long-distance for the Lyme diseas No progress yet but we've not got on to the main antibacterials yet, only some prelimani things. You might look at this thread I put a lot of possibles I found alog the way in there, one of those might be some good to you, depending what yolur situation is. If you're able to traavel a reasonable way, your options will be a lot wider than mine wef! Welcome to the forum.
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