Wombat140

After e-mailing all sorts of people, I've found what I think may be a possibility for PANS treatment for adults. I'm still in the process of trying to arrange a referral to them, but since that looks like taking at least a few weeks yet, I thought I'd post this here for other people to look into for themselves. It's called the National Severe OCD/BDD Service, it's a specialist NHS service that deals with particularly severe or complicated cases of OCD or body dysmorphic disorder that other professionals have been unable to sort out. Their web page is http://www.swlstg-tr.nhs.uk/our-services/ocd-bdd-service-bcpu-national/ They're based in London, but they're set up with the purpose of providing long-distance treatment all over the country, by working with patients' local doctors. Dr Isobel Heyman at Great Ormond Street Hospital suggested them to me (in an e-mail) as the best bet she could think of (she seems to be a PANS expert herself but she only treats children), and when I contacted them they said they had done research on PANS and would be willing to discuss this if I was referred to them. They'll only accept people who score 30 or more out of 40 on the Yale-Brown Obsessive Compulsive Symptoms scale, and who have already been through two trials of SSRIs or clomipramine (for at least 3 months) and two trials of CBT, though exceptions may be made where special circumstances make that impossible, e.g. "Patient refuses medication due to OCD beliefs; Patient is unable to take medication due to side effects; Patient has not fulfilled the criteria for previous CBT treatment due to mental or physical illness". You can't self-refer, they require a written referral from a consultant psychiatrist, there is (from my experience) no room for negotiation on this - annoying, but I suppose they'd be overrun if their criteria weren't strict, they're probably understaffed like all the other mental health services. More details are on the webpage. They only treat adults. If you're looking for treatment for a child, it might be worth contacting Dr Heyman herself, who is an OCD specialist who, I found out in the course of my researches, definitely does seem to know something about PANS and has written at least one paper on it (and not from the debunking side of the argument). Her details here: http://www.gosh.nhs.uk/medical-information/staff-z/isobel-heyman

How long is it likely to take before you can get to see Dr T in person? If it's only a week or two, then I'd say wait; I've never actually tried buying prescription medication online myself, mind, but people here (police and so on) are always saying that it's not at all safe. (Though I suppose it changes things somewhat if you actually have the name of a site that another patient has tried and has been OK; but even then, remember they could just have been lucky). Also, as DCMom says, going behind your doctor's back like that isn't the done thing so probably not good for diplomatic relations. I have to say I can't understand why, if Dr T's already decided to try minocycline, he won't actually give the prescription until you've seen him in person! If it's likely to be a while before you can see him, then maybe ring back and try and reason with them again and see if they can make an exception, given that doing it this way really doesn't appear to make any sense in the circumstances. Especially if it's due to him, not you, that it'll take a long time, i.e. because he's fully booked - it's not fair to insist on you seeing him and then say you'll have to wait because he can't fit you in!

I don't understand - what do you mean by "psychiatric issues"? As opposed to what? I suppose tics are counted as "neurological" rather than "psychiatric", but "psychiatric" just means mental problems, so OCD is "psychiatric". Did you mean things like OCD, or did you mean something else?

Hi Skylar, glad to hear things went better on Thursday, how are things going now? Did she have high streptococcus results? And is she getting better (in sync with the antibiotics, or anyway)?

Hmm, I've heard that the digital ones are actually less accurate than the old mercury ones. (Although they do have the advantage that you don't have to wait 4 minutes to get a reading.) As for those liquid crystal strip things, the ones you're supposed to hold to your forehead to see if you have a temperature, don't bother, I can never get the same reading from those twice running, or anywhere near the same reading! I managed to get one from a German brand called Geratherm (I got mine via Amazon, though obviously if you can find one from a source that aren't serial tax evaders then do); it works the same as a mercury thermometer but is filled with a non-poisonous alloy instead of mercury. The alloy is called Galinstan (gallium, indium and tin) and is very strange stuff when you think about it, because none of those metals individually are liquid at room temperature, but in combination they are! Works for me although, as I said, it does take 4 minutes to do which is tiresome, but at least I feel happier that it's the right answer.

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).

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.

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?

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.

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!

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.)

Bring a sandwich for him to eat in front of the doctor? just an idea!

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?

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.

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.

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?

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.

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.

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.

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).

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.

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.

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.)

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.

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.