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Everything posted by Wombat140

  1. Hi - I don't see why it should be a problem to post the list, after all they have a "Find a Practitioner" section on their website where you can find contact details of all their members so it's not like you're giving away any secrets. I haven't had a response to my e-mail asking them about PANS yet, I wonder why they replied to yours and not mine which was actually earlier? But after a long series of e-mails I've got a possible lead on that from somewhere else, so please pray for it to come to something (and actually help).
  2. Gpookie, what was the other infection that the Augmentin wasn't dealing with? I know there are various things that don't respond to Augmentin, but still it would be interesting to know.
  3. Thanks very much! I was trying to get answers to that question myself. How do you know that, though, did somebody tell you? Or is it just that it isn't in 23andMe's own report? If so, a lot of other things that people here use it for aren't in that either (all the methylation stuff, for instance), but you can get those by plugging your raw 23andMe data into another website. Does anyone know whether the same's true of HLA?
  4. Another place you might try is British Society for Ecological Medicine (formerly British Society for Allergy, Environmental and Nutritional Medicine, which gives a better idea of what they actually do). Their web address is http://www.bsem.org.uk/ I came across them only recently and have contacted them to ask if they have anyone on their list who deals with PANS/Lyme/mould sensitivity (that being what I'm currently trying to investigate myself), no reply yet. Unfortunately the "Find a Practitioner" thing on their website has a problem - you're supposed to be able to search by speciality, picking from a list of specialities, but nearly everyone seems to include every speciality on the list next to their name, so I think there's a mistake somewhere.
  5. Three pasta sauces Being vegetarian we had to be a bit inventive about ways of getting plenty of protein without using cheese while I was on the diet. Here are our three. 1) Tomato sauce with beans 454 g (1 lb) tin chopped tomatoes. 454 g (1 lb) tin of beans - any kind will work; I think my favourite version's with chickpeas. 1-2 sticks of celery (depending on size), or 1 chopped onion. 2 bay leaves. Tomato pureé. Olive oil for frying. Can add a red pepper, or some mushrooms. Slice celery thinly, chop pepper or mushrooms if using. Fry in olive oil over a low heat for around 5 minutes, stirring all the time, until celery is transparent but not brown. Add tomatoes, beans and bay leaves. Bring to the boil, then turn down the heat and simmer for at least 30 minutes. The longer it cooks, the better the flavour. Stir frequently to avoid sticking. When ready, remove the bay leaves, and stir in up to 1 tablespoon of tomato pureé to thicken; if it's been cooked longer it will have boiled down more so you'll need less - if cooked long enough you won't need any at all. 2) Rich tomato sauce with almonds Same, only leave out the beans and instead stir in a tablespoonful or so (I think) of ground almonds when the sauce is ready. 3) Cooked lentils make quite a tasty pasta topping by themselves - take about 3 oz (cooked weight) per serving, add water and some dried mixed herbs and heat them up. Or you can add fried mushrooms, peppers or celery too. Lentils come in useful for filling all sorts of gaps on any special diet, in fact. Recipes always say that you don't need to pre-soak them (at least the red kind) like other dried beans, just cook them for 20 minutes from dried, but I don't trust that; sometimes it works, but more than once we've tried to do that and 40 minutes later they still weren't done! I don't know if this happens to anyone else! So when we're planning on having lentils I take a lot - like half a pound at a time - and put them to soak overnight, then cook up the whole lot (still takes about 20 minutes), use some and drain the rest (as best I can) and freeze them for quick use later. Half a pound of lentils go an incredibly long way. I have a trick for storing them: I put them all in a freezer bag, weigh the bag, then flatten it out a bit and divide it into roughly 2-ounce blocks by pressing the edge of a ruler into the bag - e.g. 5 blocks if there's 10 ounces - and freeze it like that. Then when you want some you just have to take out the required number of bricks!
  6. Hmm, I recognise everything in that description, in fact I've had that feeling for the last few days (alongside a nasty bout of worse-than-usual OCD) and it's only now let up a bit. I've been making vague attempts to try and describe it in words to pass on to doctors but couldn't manage it, but you (and your son) have described it exactly. I'm going to bookmark this for future reference. And it DID feel exactly as if my head was jammed full of something. Which, if theory is correct, it was. (Did he keep letting his mouth hang open and opening his eyes wide or was that just me? I kept catching myself doing that, apparently in some foolish attempt to relieve the pressure.)
  7. Bring a sandwich for him to eat in front of the doctor? just an idea!
  8. Hi, sorry I can't really answer this, I know the stuff about treating PANDAS and the stuff about treating OCD, separately, but don't know much about how they fit together - I've not had much luck with either so far myself, so can't tell you anything from my own experience. But I just wanted to say good luck and how is it going on at the moment? Is your son still worse, or back to where he was, or better?
  9. I'd post but I don't know anyone I'm afraid! That doesn't mean there isn't anyone, it wasn't really tics with me, more OCD or PANS-like stuff, which I haven't found anyone for so far. I'd be interested to hear if anyone else knows anyone, either about tics or PANS.
  10. Nah. The doctor I was seeing at that time only really knew about PANDAS, as far as I could tell, not things like Lyme disease or mycoplasma. Since then I've found somewhere called the British Society for Ecological Medicine, that I think MIGHT have doctors who might be aware of that kind of thing, but not sure (the website's a bit unclear) and I'm waiting to hear back from my GP after writing her a long letter about all this, and I don't want to contact the BSEM until I've heard back and know where SHE stands on the whole thing. Complicated. I keep feeling that I'm just obsessed and should accept that it's not PANS and drop it, since none of those antibiotics had any effect, but I have to keep reminding myself that mycoplasma for one is known not to be affected by any of those three.
  11. There's some things in the "Your Child has Changed" booklet about precautions to avoid catching strep infections, if you already know your child reacts to them. Not quite what you asked maybe but could be useful. I agree, at least I don't know much about it but logically if he's showing PANDAS symptoms, then there's already a PANDAS reaction going on in there, so that needs treating. Possibly if you treat that (get rid of the infection) promptly, before his immune system has time to get too hysterical about it, that might mean it'll be less sensitive in future than if the situation had run on for a bit, as it presumably did with the other two. I'm just guessing there though, based on something I vaguely remember hearing. Can anyone comment? Is that a real theory or am I imagining it?
  12. Coiuld he have Babesia without Lyme disease? (Would that give a negative Igenex test, or does it test Babesia as well?) I'm interested myself because I have what looks like a Babesia rash (petechiae in small patches), albeit very minor. Never had any LD/coinifection testing done though. I don't have any of the classic physical LD symptoms, but then I don't think I have the Babesia ditto either.
  13. Hi, there's me but I can't say much that's useful, as nothing seems to be working for me at the moment! Some info about my history in my sig. Will subscribe to this thread myself.
  14. Thank you very much! I've written the Dr a letter and I did mention steroids. (Tried antidepressants just recently and it didn't go well, not sure whether it was psychological or physical but things got worse.) I'll let you know developments.
  15. Small correction to what you said there - Mycoplasma's actually a bacterium, not a virus. Sorry I can't help you get the full article, my student access to journals has run out now. I agree, good to hear studies are being done! Odd that there's no abstract (summary).
  16. If the blood tests are important, can your local doctor/nurse not do a home visit? (If your son can deal well enough with the blood test itself, that is.) That's what our family doctor is doing for me at the moment, since she accepts that I really can't make it to her office; and she's said she's willing to do that for tests ordered by other specialists or fixed up independently with a private lab, too, if the test sounds like it makes sense. It usually means waiting a few days until she has time free, but otherwise no big deal.
  17. My mum's rule of thumb in baking is that if the filling is sweet, always use unsweetened pastry. This not only cuts down the sugar, it tastes better, as the contrast between the sweet and plain parts shows up the flavours. We puzzle every year over the fact that no shop-bought mince pies are EVER made with plain pastry. We always make our own - not quite as pastoral as it sounds... packet pastry mix and a jar of mincemeat... but they're so much better. Mincemeat plus sweetened pastry doesn't have room to taste of anything much but sugar. The same is true the other way around, that's why a sweet crumble topping works best of all with slightly sour fruit like tinned apricots in juice.
  18. Thanks muchly Sheila! These look very tempting... unfortunately, I'm not actually doing GF/CF right now, what I'm doing is an attempt at a low-free-glutamate diet... which excludes both mushrooms and cooked tomatoes. Bad timing! When/if I decide that some or all of those things aren't actually making any difference, I may well be back to those pizzas and, um, quasi-pizza-objects. (I've taken a fancy to the idea of the pizza-flavoured omelette.) Question for anyone - I keep having problems with millet and quinoa that have somehow gone off, or something. Anyone else get this, or know what's causing it? Some bags are fine, others (even from the same brand and the same batch number) have this faint weird, sickening aftertaste. It's so faint that at first I tell myself I'm imagining it, but it just gets worse as I go on eating until I usually can't finish the helping. And, as I say, some bags taste just fine to me, so it's not just that I don't like it. I've had it happen with several different brands and with millet flakes, millet flour, quinoa flakes and quinoa flour, but not (so far) whole millet. (I don't know about whole quinoa because I never use it, don't like the texture.)
  19. Something in that, well thought of - I know I play computer games excessively when I'm feeling bad, everything else seems too difficult. If for some reason I haven't got a game to play at the time, I'll rattle randomly around forums, anything. (I do often feel better if I can manage to motivate myself to start on something else, non-computerised, and get into it, though - but sometimes I just can't get into it even if I try to stick at it for a bit, and have to give up and go back to the computer.) On the other hand, using the computer definitely does muck up my concentration completely after an hour or so (this is true whether I'm having a bad patch or not). So there are things both ways.
  20. Ah, I see. So no particular indication of whether it's streptococcus or not from that, then. (That's useful to know, I'm giving my doctor a copy of "Your Child has Changed" and I wanted to know what to scribble on that bit.) Realistically I don't think I have a chance of getting prescribed high-dose steroids just on the off-chance, before there's any evidence that I do have anything wrong with my immune system - American doctors just seem to prescribe much more recklessly than British ones. But I'll ask.
  21. Wisdom-seeker - did you mean to say azithromycin, not Augmentin? It was azithromycin that Alyonushka's daughter was improving on, and I don't think Augmentin is usually supposed to work for Mycoplasma. (Just pointing that out for Alyonushka's benefit, really.)
  22. Well, I know some (but not all) kids grow out of normal food allergies, so perhaps it's just simply that some of the Tourette's kids also grow out of their allergies. Something to do with the immune system developing, perhaps? (Wikipedia has something on this https://en.wikipedia.org/wiki/Food_allergy - look under "Epidemiology".) But you can't rely on that happening, and meanwhile anyway the tics are a pain for you and him, so if identifying and dealing with an allergy could help then that's worth doing, even though he might later grow out of the allergy anyway. At least that's my logic.
  23. Hello everyone, a couple of basic questions. We've finally involved our doctor and since she knows nothing at all about PANDAS, we're having to go over everything from scratch which is good for us as it makes me realise that I didn't know as much about the basic principles as I thought I did. There's nothing like trying to explain something to somebody else for making you pay closer attention yourself! 1) My OCD symptoms don't follow a "saw-tooth" pattern, they're all the time - they'll go up or down slighly over a period of months, but they've almost never disappeared since they started. Does that mean it's not PANDAS? And does the saw-tooth pattern still apply with things such as Lyme disease that are a continuing chronic infection rather than repeated separate infections, or would you expect the symptoms to be continuous (like mine) in that case? (If so, can that be taken as a small clue to what infections it might be?) 2) I've read that a steroid burst is a bad idea if it might be Lyme disease. Since we currently have no idea what it is at all (haven't been able to access any antibody testing yet), does that mean that we shouldn't try a steroid burst unless and until we do find out what the infection is, if any?
  24. Hi Mike. I understand what you're saying, OCD is dependent on so many external factors (stress, seeing stuff that reminds you of your OCD theme, etc.) that it's a complete swine to try and guess just what is going on - whether things are worse biologically or whether it's just that life has been provoking it more. OCD is my main symptom and I have the same problem working out whether it is responding to anything I try taking or not. Looking at your previous postings I see that you've had elevated test results before for strep anti-DNAse B, mononucleosis and mycoplasma. Rather than trying to get an MRI (even if MRIs could answer this question which, as others have said, they can't really), wouldn't it be easier to find out whether you're having a flare by getting those re-tested and seeing whether any of the numbers have jumped since last time? (Other people - is that right, that titers go up when you have a flare? I'm pretty sure that's right but I'm going from memory of what I've read.) I may be misjudging how much easier that would be, of course; there's a super-long waiting list for MRI scans of any kind here, it may be different where you are. Here, getting your titers redone would certainly be much easier and quicker than getting an MRI, if you had access to the titer tests at all.
  25. Millet flake biscuits I often find that to avoid sugar, it's useful to have a stock of non-sweet things that fit the kind of occasions when you'd previously have had something sweet. If I've been baking these biscuits and feel in need of something specially nice to nibble on to cheer me up (frequent occurrence with OCD in the house...), I don't have to either cave in and eat sugar or go without. They're lovely and crumbly despite having less fat than usual, I think it's the millet flakes that do it. Ingredients 6 oz (175 g) wholewheat flour 4 oz (50 g) millet flakes. (The original recipe that this was heavily modified from says medium oatmeal. Never tried that with this version as my mum's allergic to oats, would probably work fine for all I know.) 2 oz (50 g) butter 1 tsp baking powder 1/2 tsp salt 1 tbsp or so of milk. Pre-heat oven to Mark 4. Grease a baking tray. Mix everything but the milk together in a bowl. Rub in the butter, then add enough milk to make a rather wetter dough than usual for, say, pastry, as it tends to crumble. Roll out thin, about 1/8 of an inch, and cut into 7 cm (3") biscuits. Bake for 15-20 minutes, until firm and lightly browned. Leave to cool, then store in an airtight tin. They keep for about a week, but if they do start to lose their crispiness then heating them up in the oven will revive them.
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