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Wombat140

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Everything posted by Wombat140

  1. Thanks very much for the links, msimon3. I'm aware of PubMed (I'm a recent science graduate, anyway, you can't help falling over it), but like I say, I'm just so tired... it's not that I don't know how to hunt for odds and ends of information, I just can't remember any of them or synthesise them into any kind of picture, they just dance around my head. I can't concentrate on all this stuff on a screen for any length of time, I never could anyway. I'm just so tired. I'm going to print out the Jemsek one, and the Latitudes "Your Child has Changed: Could it be PANDAS?" one which I've just downloaded, and read them that way. Thank you all so much for trying to help me. I can't include tiredness in the list of symptoms, I'm afraid; what I said was that I'm tired out by all the violent compulsions I have to constantly do - so I can't tell whether or not I'd have been tired otherwise! So I'm down to occasional appetite loss and this insignificantly tiny rash. Oh, and I do overheat ridiculously easily with the least exercise; again, that may be because I'm doing compulsions all the time, or it may be my brain making a fuss about nothing (which it undoubtedly does), but I'm not sure that entirely accounts for it all. If nothing else, even if the physical symptoms don't prove anything in themselves, keeping note of when they appear or disappear would be useful as a clue to whether things are getting better or worse internally, I suppose. Albymom, interesting but surely I'd first need to have some kind of symptom or evidence of an infection to get referred to a rheumatologist? The rashes are less than half an inch across, cause no problem in themselves, and only appear from time to time; unless petechial rashes are considered much more alarming than I knew, I very much doubt if I'd get a referral to a specialist just for that! As for MRIs, useful to know that they're relevant in such a case, thanks, but I happen to know there's a 6-month waiting list for that on the NHS, or was a few years ago; it'll be worse now, all waiting lists have got much worse since the right-wing government got in. We've once gone private (my dad, he was in agony with what turned out to be a slipped disc and the doctor wanted an MRI straight away in case they damaged things further by doing the wrong thing), but that cost several hundred pounds, so again, at the extreme limit of what we can afford. (I should say that the whole of the UK isn't like this for medical treatment! The trouble is I live in Rochdale which is almost the Detroit of the UK. Our NHS district never, ever has any spare money.) Sorry, I'm making unnecessary protests there - it just never ceases to amaze me how airily you lot say things like "Go to a rheumatologist straight away", as if that was easy! Is it so easy, where you live?
  2. I don't think it's true that early language rules out Asperger's syndrome. I have a diagnosis of AS (albeit fairly high-functioning) and I wasn't late learning to talk, in fact rather early, forming sentences and everything. (High IQ also). Anyway, I hope the antibiotics do do the trick for your daughter, it sounds like it's well worth trying, especially since PANDAS is apparently much easier to treat if you catch it (if it is it) this early.
  3. Beerae, do you not think that that occurred to me? I've spent weeks on end trying to find a doctor with any knowledge of PANS, believe me. The only one I ever found in the UK was Dr Goyal, who now seems to be no longer practising. (I did go to see him a few years ago, but at that time my needle phobia was so bad that I never managed to get any tests done at all so there was a limit to what he could do!) Sorry, didn't mean to be rude, I'm just really cross at the moment. (Heard this morning that my appointment's been postponed for a week - although that may be a blessing in disguise as I haven't heard back from the private lab yet so if the sample had been taken today I wouldn't have been able to get those tests done anyway.) I've been chasing shadows around the Internet until I want to cry and I really don't think I can stand any more. I need help but there isn't anybody. By the way this thread may explain what my actual situation is, if you need it. Is there any point investigating PANS w/o specialist doctor? If you or anyone else DO know of anyone, or can suggest any way of finding anyone, PLEASE could you let me know? I am just SO SICK of chasing around the Internet day after day after day... I suppose I could consult an American doctor over Skype, but then would a prescription from them be any good in this country? Or could they send out the medicine? Besides, wouldn't an American doctor be incredibly expensive? We're not that rich. (We don't have medical insurance.) (I've just been through the doctor thread, can't find anyone, unless I've missed someone.)
  4. Thanks all three of you. I'd been doing Web searches for "babesia rash" and "bartonella rash" after I posted that, and came across some things about "petechiae", and it is indeed exactly like that. Well, at least I know what the type of rash is called now, anyway! Some of the possible variations of petechial rashes with either Ehrlichia (thanks for pointing that one out) or Babesia look quite like what I get. Doesn't mean to say it couldn't be something completely different, of course. There isn't any preliminary test for that kind of thing, is there? Any way to tell whether Lyme disease or its relatives are likely to be involved or not? We can't afford Igenex just as one of many long shots - we might just be able to stretch to it if there was a really good chance that it would be relevant (AND useful), but only then. (We don't have medical insurance.) I don't have any of the physical symptoms associated with Lyme disease, except this. But then I don't really have any physical symptoms at all; never have had; there's this and sometimes unexplained complete loss of appetite and apart from that it's all neuro-psychiatric stuff. (Of course, that makes it hard to be sure about other stuff; for instance, I can't tell whether I get tired more easily than I should, because I'm tired out all the time anyway from constantly doing compulsions.) I don't think I can stand much more researching on the Internet, and I'm not taking much of it in or doing it very well, either. Is there a book I can get that would tell me the basics about chronic Lyme and associated rubbish? Or at least a single reliable website? That would be very helpful.
  5. I'll start: Baked banana pudding This isn't the same pudding that's sometimes called "baked bananas" - it's somewhere between that and bread and butter pudding. A hot pudding made in ten minutes, and it's good for you. These instructions look more complicated written down than they are to do. It has to be said that the result looks like something scraped out of the bin. This is normal, and it doesn't taste like it at all! (It looks more appetising once it's got yoghurt and jam on top.) Ingredients Quantities depend on the size of your ovenproof dish, these are for ours which is about 7 inches and makes enough for 3 people. 2 or 3 slices of wholemeal bread 1 or 2 bananas - should be thoroughly ripe, in fact this is a good use for slightly overripe bananas, though preferably not actually going mushy. 1 teaspoonful of mixed spice 1 dessertspoonful of raisins Milk Plain yoghurt and sugar-free jam for topping. Cut bread into fingers - cut each slice in half and each half in thirds. Line an oven-proof bowl with the pieces. Sprinkle with spice and raisins. Cut bananas into halves or thirds (depending on size), then halve each piece lengthways. Lay them flat on top of the bread. Pour on some milk - half or quarter of a pint, maybe, not sure. Bake in a medium oven for maybe 20 or 30 minutes, check from time to time to see that any sticking-up edges of the bread aren't burning too much, until it looks done. Serve with milk (the first lot of milk will all have evaporated or been absorbed by now) and yoghurt and a spoonful of jam on top. Note on sugar-free jam It's worth seeking out the kind sweetened only with fruit juice, e.g. Whole Earth or Meridian, which is labelled "Pure fruit spread" because it can't technically be sold as "jam" (at least not in this country). You probably still shouldn't go too overboard with it, as it has a fair bit of concentrated fruit sugar, but I assume it's not as bad as ordinary jam and it's worth getting just for the taste. Since they can't bulk it out with sugar, it's impossible to skimp on the fruit, so that it tastes more fruity than any ordinary jam I've ever had. I don't know why more people don't know about this!
  6. Another recipe thread. What are your favourite sugar-free recipes you've discovered over the years, the ones you use all the time? Or any other handy ways of doing things you've discovered, that aren't actually recipes? We can pass them all on here. The person who posts the best recipe... er, is a clever cook. :-) Also, you could post your requests for things you haven't found a good recipe for yet, and see if anyone can step forward with one. That's all the special diets I can think of; if anyone else thinks of one that ought to have its own thread, please start one.
  7. That sounds a good idea. Just checked NHS website and there definitely are infectious-disease specialists here; I hadn't thought of those, that makes sense. Unfortunately, it's the same problem as with any other specialist; you can usually only get to them by being referred by your GP, and I doubt if she would or could do that with no conventionally recognised evidence that I might have an infection! But then, if I did get the test results, and could show her something funny-looking on them, then she might have a case for referring me. So then there is a point to doing some tests. Unfortunately, I have already done a course of Augmentin without any success. Not sure how that would work with consulting a US doctor. I mean, surely the US doctor wouldn't do that without being paid? But then, if you don't know for sure whether your doctor did consult Sammy's doctor, then presumably you didn't send Sammy's doctor any money? (Not sure whether we're running into one of those things where the system is different here.) Thanks - it was between e-mailing a lab today or not bothering after all, and you've convinced me that there is some point in doing it.
  8. Thank you very much, that's quite a help. I once did a strict gf/cf diet for 10 months with no difference in symptoms (weirdly, I had some of the typical "withdrawal symptoms" at the beginning, but that's all!) so I can probably rule out coeliac disease. Thyroid tests done and came back normal, my GP did manage to include that in that previous test (I didn't even ask for that, that was her suggestion, so that was a bit of luck that that's relevant!). So that's something. As for CBT, yes, everyone (understandably) tells me that, but it... doesn't work. My "OCD" at the moment is such that it goes completely off the deep end at any attempt to go against it. So my ambition with all this biological stuff is at least to find some way of getting to a state where that kind of thing is even possible, without physically beating myself up! Well, here's hoping. Thanks again, Wombat140
  9. I could do with some advice, please, from your experience. I'm on the point of trying to get some blood tests done, out of pocket, but I'm wondering, is there any point in me trying to get tests for infections/immune conditions - if anything showed up, is there actually anything I could do about it? My family doctor wouldn't know what antibiotics to use, and I very much doubt if she'd be willing to prescribe something just because I said I thought it was the right thing to use based on something I'd heard at third hand on the Internet. And she'd be right; I don't have a clue what I'm doing, and I'm too tired and scrambled to piece together all these bits of hearsay into any coherent picture. And I don't know who she could refer me to that would be more knowledgeable; as far as I know, since Dr Goyal closed his clinic there is no PANS or PANDAS specialist in the UK at all - if there is, I'd be grateful to know. (Would there be any other kind of medical specialist who'd know any more about what to prescribe for a chronic infection/auto-immune condition than an ordinary GP would? Rheumatologist or immunologist or something?) Given that, is there any point to me trying to get tests, or is it just a waste of money? Hope this is intelligible, I think it is but I'm very tired and very tired of all this. :-(
  10. Oh, I've just found this: http://pandasnetwork.org/understandingpandaspans/testing/immunologicalworkup/ Thank God! Just to check, does that sound to you as if it's a good starting point for the PANS side of things, nothing major left out? And where it says "other bacteria and viruses", which ones would you say are priorities for testing, there are zillions of possible ones?
  11. Nut pizzas This developed from an already fairly unpizzalike thing we used to have with cheese instead of nut butter. They're no really all that much like pizzas but very nice and "fill the same shape of hole", as we say in our family. Ingredients: Gf/cf rolls or scones (I think scones are called biscuits in America?) Nut butter (I used almond butter because it's what we had - no reason to think peanut won't work) Cherry tomatoes - 2 large or more small Dried mixed herbs Split rolls in half, spread each half thickly with nut butter. Cut tomatoes into slices and arrange on top. Sprinkle with herbs. Bake for 10-20 minutes in a medium-to-hot oven - keep checking to see if they're done. Serve with pasta and veg. Variations: Like any pizza you can mix up the toppings - mushrooms and peppers are good, for one. Note We used to use the gf/cf scones from Marilyn LeBreton's recipe book ("Diet Intervention and Autism", from Jessica Kingsley Publishers) for this. If you don't already have this book, then I'd recommend getting it just for those scones - they're worth the price of the book by themselves. They look and taste exactly like good ordinary scones, but the remarkable thing is that unlike ordinary scones, they stay fresh for a whole week. I don't know what the trick is! Maybe gluten-free flour holds onto moisture better, or something.
  12. I thought it might be good to start a recipe thread. What are your favourite GF/CF recipes you've discovered over the years, the ones you use all the time? Or any other handy ways of doing things you've discovered, that aren't actually recipes? We can pass them all on here. The person who posts the best recipe... er, is a clever cook. :-) Also, you could post your requests for things you haven't found a good recipe for yet, and see if anyone can step forward with one. Detailed measurements and all that are optional, unless of course it's something like baking where it actually won't work unless the amounts and timing are right. If other people on here cook anything like the way my family do, this thread will probably end up like Jane Austen's spoof History of England which began: "There will be very few Dates in this History". Well, there may be very few measurements in these recipes. I'll start:
  13. I've seen something called CD57 mentioned as possibly a sort of preliminary test for Lyme and related stuff, is that any good? I mean, is it actually accurate? Obviously a preliminary test that rules out something that in fact shouldn't have been ruled out is worse than useless so I wouldn't want to do that.
  14. Ah, thanks. I thought it couldn't be that simple. By the way, I don't understand any of those test names you mention, I'm afraid :-) Are you saying there are other tests that can indicate the presence of Lyme disease or its co-infections, other than the fiendishly expensive Igenex and Western Blot? (I don't know if we could get those, anyway, even if we could afford them.) If so, any information would be very welcome. (And please don't say "here are some websites, you can read up on it" - I'm so tired right now, and the blood's being drawn on Wednesday, so I have limited time for research! Just give me the 10-second oversimplification.) Even if it's only a test that would indicate whether SOMETHING like that is going on, without necessarily pinpointing whether it's Lyme or Bartonella or Staphylococcus or one of the others, that would be useful - it'd let us know whether anything further was even necessary. Just as a preliminary test (assuming it wasn't too expensive in itself). In fact, a "catch-all" one that covered several possibilities might be quite handy to narrow things down, at least it seems to me as if it should be.
  15. Will they do sessions over the phone? Some CBT therapists will, if a visit in person isn't possible. I don't know whether your son would listen of course, it's just an idea. Is he unwilling to try CBT in itself, or is it just going out of the house that he doesn't like? If he's open to the idea of CBT itself, then he might be willing to talk to someone on the phone.
  16. I had a blood test a couple of months ago; my doctor couldn't order any tests for specific infections but did do a test for C-reactive protein, which she said was a general indicator for inflammation/infection. It came back normal, <0.2 mg/l. (In fact, that seems very low, given that the acceptable range was given as anything up to 10.0 mg/l and Wikipedia says that the normal concentration in healthy human serum is between 5 and 10.) Does that rule out the possibility of auto-immune problems, or is it possible to have a normal level of C-reactive protein and still have a PANS condition? If so, is that true of all the various kinds of PANS (streptococcus, mycoplasma, Lyme disease, etc.), or only particular ones? (I know Lyme disease is liable to confuse tests because it itself suppresses the immune system.) Thanks, Wombat140
  17. Digging up this thread again to ask if anyone else has anything to advise? There's a possibility of sending blood to a private lab to have tests done that my regular doctor can't order, perhaps including some immune/infection-related ones, so I need as much idea as I can of what to ask for. I'm pretty sure we can't afford to do all the tests that Mayzoo's doctor ordered, so I really need some idea of which ones are considered the priorities, if any of you have any idea!
  18. There's this rash I get from time to time; it started years ago, and was quite noticeable for maybe a year or two, and then it seemed to sort of fade out, but I still notice tiny bits of it every now and again. It's only just occurred to me to ask about it on here. It appears as small circles of dark red speckles, about an inch or two across, nearly always on my arms or legs; I can't remember whether they were rings or solid circles, though I rather think they were rings. Not raised or bumpy at all, just speckled. I can't remember whether it was itchy or not when it was at its height. That's what it was like at the time when it was most noticeable, now when it appears it's only much smaller patches of no particular shape. I would attach a photo, but unfortunately the patch I noticed the other day has gone again! My mum tried putting tea tree oil on it, which seemed to work to some extent but it kept coming back, so she took me to the doctor about it and the doctor said it might be ringworm and gave me some cream called Daktacort, which didn't have any effect at all. (After that we kind of forgot about it.) Having seen photos of actual ringworm since then, I don't think it was, ringworm is far more lumpy. I honestly can't remember whether this was before my OCD symptoms started, after, or at the same time; if it turned out to be relevant, I could probably find out by asking my doctor to look up when that cream was prescribed. Do you happen to know anything that causes a rash like that? I'm just asking on here because you seem to know just about every infection there is, between you! There's a possibility of getting my blood tested for infections (this Wednesday, February 3rd), and I thought if there is any infection of that nature that looks like this, it would be as well to know so I can make sure to ask them to check that one. Of course, it may be some perfectly ordinary non-PANS-related fungal infection or something that my doctor didn't happen to know of, in which case it'd still be useful to know. All the best, Wombat140
  19. Surely that's the specialist's job, if she's referring you?
  20. One more for you; I've noticed this before but I've been experimenting a bit with my collection of powdered supplements to work out the exact recipe. If you mix 1 tsp magnesium carbonate powder and 1 tsp Vitamin C powder with about 2 tbsp of water and let them react, you end up with a completely clear solution (magnesium ascorbate, I assume), and if you mix it with a glass of fruit juice, it doesn't show at all (at least, not to my tastebuds). Don't try and disguise it in anything else, as it's quite sour, but in orange juice it seems to disappear. It needs to be just pure magnesium carbonate powder and pure ascorbic acid powder (I get G&G brand, though they're in the UK so what you can get may be different). 1 tsp gives 120 mg magnesium, I don't know how much you're trying to give your son, obviously scale as needed. I think this is actually also a cheaper way of getting magnesium in an absorbable (not carbonate or oxide) form than most ready-made supplements are! Only problem is it takes about an hour to react and dissolve completely. Adding only 1 tsp of water to start with, then adding the rest once most of the fizzing's subsided, speeds it up to half an hour. Using hot water might work too, though you'd presumably lose some of the vitamin C but then that's not what you're using it for! (One place where my knowing the rules of chemistry comes in handy! More concentrated solutions react faster; warm solutions react faster than cold; more finely powdered and thoroughly mixed substances react faster.) Hope this helps. Good luck with getting your son to take it one way or another!
  21. Hello, don't know if anyone here will be able to suggest anything as it's really a UK issue, but worth a try. Our GP (family doctor) says she's not authorised to order ASO or Anti-DNAse B tests herself, it would have to be - I think she said - the rheumatologist; I'd assume an immunologist would have authority to do that too but she didn't mention that. I assume the same would go for other infection tests such as mycoplasma. Thing is, since there's no evidence that I have an infection, there's no obvious reason to refer me to the rheumatologist or immunologist! Catch-22! Any ideas? Unfortunately the PANDAS specialist I saw a few years ago (he ordered those tests, but I wasn't able to deal with needles at that time) no longer practises, and I don't know of any other in this country. Probably an academic question anyway since there's nothing anyone could do about it - I've already been tried on Augmentin, azithromycin and tinidazole without success, and you can't get IVIg here.
  22. If it's distilled water it certainly would be clear of manganese. (I know distilled water is sold for filling car radiators for the very reason that it doesn't contain any mineral substances at all - in a radiator they can precipitate out and bung up the machinery). I don't know what kind of "purified water" we're talking about, what does it say on the label about how it's purified? Good luck. Incidentally, if you live in a hard water area and then switch to purified water, she could possibly end up suddenly getting significantly less calcium and magnesium than she was, so if you are in a hard water area keep that in mind and compensate if need be.
  23. Hi Stacia, welcome to the forum. Just wanted to say that if you're looking for treatment for your OCD have a look at what I said to Shaggy11 just now on another thread. http://latitudes.org/forums/index.php?showtopic=758&page=7#entry183049
  24. Hi Shaggy11, welcome to the forum. I'm sorry for the late reply, this section of the forum is often a bit quiet. Obviously I'm not a doctor, but I know many people with this and other kinds of OCD (formally diagnosed with OCD) and what you describe does sound exactly like OCD to me. If I were you, I'd go to a doctor and explain what you think is going on, and ask to be referred to a psychologist/psychiatrist for a proper assessment/diagnosis and for cognitive behaviour therapy (CBT). (At least, here in the UK you'd start by going to your family doctor and ask to be referred to a specialist; the arrangements may be different in the USA, you'd know better than I would.) Make sure it is CBT and not some other kind of "talking therapy"; those can sometimes help but the evidence is that CBT generally works much more often and more effectively than any other. You may see "ERP" (exposure and response prevention) mentioned on here as a treatment for OCD; that's part of CBT where it's applicable, CBT includes other things as well which seem to make it more successful than ERP alone. Try and find somebody who has training and/or experience in using it for OCD; knowing how to apply CBT for depression (the most common thing it's used for, over here) is not quite the same thing. Some people do well on CBT alone, some people also need medication, at least for a time until they've had a chance to work on the CBT. If so SSRIs (Prozac and the rest of that category of medicines) are the first choice - they seem to work for OCD as well as for depression, for some odd reason. Either way, people often can get a lot better with the right treatment, so please ask your doctor about it! Sounds as if you've got a pretty good idea of how this stupid condition works. Good luck and I hope you soon feel better. Wombat140
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