Wombat140

There is no such person as "me". Hypothetically, if a person existed and doing or experiencing anything at all in the context of the "rule" having been broken and still being broken and not having been resolved yet caused them so much pain that it would take too long to explain how much pain, especially if they did unfamiliar things which got their attention more, and was basically doing the same few things over and over again because doing unfamiliar things got their attention so much that they broke down screaming, seeing a doctor - or even concentrating enough to start to arrange to see a doctor - might be a non-starter, and they might have seen many doctors over the years to no effect (and also taken large amounts of myo-inositol to no effect) anyway. Do you have OCD or PANDAS? You seem to mention PANDAS in your username but that might be you or your son.

Does ibuprofen reduce the symptoms at all? That seems to be a thing that's often characteristic with PANDAS/PANS.

No, apparently nobody ever answered (as you see) until you did. Thanks for replying. The rule still seems to be broken. In my experience it seems to be possible for the rules to change such that something that would formerly have broken them now does not break them if it happens again, but it seems that if they are broken they remain broken until the thing that broke them is resolved. Sleeping seems to make no difference with the one that currently seems to be broken. It just seems to be so much pain that it would take too long to explain how much pain, constantly, 24 hours a day.

If "the rules" get broken and they stay broken, so you're stuck the wrong side of "the rules" the whole time, does it ever resolve if for some kind of medical reasons the underlying PANS gets less, even if the original thing that was breaking "the rules" is not resolved? It doesn't seem to in my experience. Usually once I'm "stuck" I seem to stay just as "stuck" as I was to start with until the thing that broke "the rules" is resolved, even if the underlying PANS has subsided to a point where if that thing were to happen again it wouldn't cause any difficulty.

Anyone else with experience with this? And what machine/what frequencies did you use? Like Dasu, I've had a lot of difficulty working out which is which. Many of them seem to contradict each other.

I need to ask a very awkward question by PM. Is there anyone who'll let me PM them, who is familiar with PANS and in particular understands what the phenomenon of "invisible walls" (as in "Saving Sammy") is? Somebody I've spoken to before would be preferable, but whatever I can get.

Whew, thanks for the warning about Diflucan! The NHS webpage does mention oral antifungals being used for that as if it was a normal thing. It also says that "one dose of medicine should be sufficient". I'll bear Saccharomyces boulardii in mind, and the grapefruit seed extract. Is there any risk of PANS herxing with grapefruit seed extract, do you think? I mean, from whatever else it is I've got, in case it turns out to respond to grapefruit seed extract when it doesn't to antibiotics?

My mum seems to have acquired the idea that oral antifungals are considered dangerous and are only prescribed when there's no alternative, and it would have to be a - refuse to even say the word - or go without any treatment and also that it will never get better by itself. I have such enormous issues about this that I think if I did that that'd be the rest of the summer spent recovering from the trauma, and I know me, I don't recover from trauma by sitting quietly sobbing in corners but by constantly buttonholing my mum or dad, asking frenziedly if anyone will ever be able to bring themselves to look at me again without feeling sick. etc.. Do you think it's true about the antijfungals? My mum seemed to be basing this idea on something her doctor had once told her regarding an infection in her foot, so perhaps that's a different kind of infection requiring a different kind of antifungal? Alternatively does anyone know any other kind of cure for it that actually works?

My mum has a magic method for injections and blood tests. She digs her thumbnail (of the other hand) into her finger, which hurts, but she's doing that herself so she can do it - it's like trying to tickle yourself, that doesn't work either - and since it hurts you can't help but pay attention to it, and therefore can't pay attention, or not as much, to the fact that a needle is about to be stuck in your other arm. Using this method I had all the blood drawn successfully last Tuesday in under 20 minutes - beating my previous record by at least 10 minutes. Well, that and singing "Castle" by Halsey very loudly inside my head. I wish she'd told me about this earlier!

Once I've put my head on the pillow at night, I daren't lift it again or it'll be a lot of trouble getting it back on it again, to say the least. Well, but then the other night I realised that I still had a glass of milk I hadn't drunk and I wanted to drink it. So I tried to very carefully drink it lying down. This is how I managed to pour milk up my own nose. Such is life.

I really don't think that it's possible that any of these patch things affect the brain. I should jolly well hope not, anyway. I looked up Synera and it is just lidocaine and another thing of the same class whose exact name I've forgotten, like any other topical thing. I think you must have got a bit confused. Update on my own position: she has prescribed some more now. My symptoms have gone completely back to where they were before over the three weeks without antibiotics, but I'm hoping they will eventually go away now I can take them again. Blood test being arranged.

Did you see the "oddball symptoms" thread a bit further down this forum? That talks about that. A lot of people seem to suspect a connection. I'll also point out that low muscle tone and general double-jointedness seems to be very common in people with Asperger's syndrome as well, although I'm not sure if it usually goes as far as that shoulder-snapping thing you described. Of course, Asperger's isn't at all the same thing as PANS, but they do go together disproportionately often, so a correlation in one would mean some amount of correlation in the other too, if you see what I mean.

Ahhh - that would have worked but unfortunately naproxen is a prescription medicine in this country! So close but so far! I'll bear it in mind, though, perhaps it'll be useful some time in the future. Do you mean to say it worked noticeably better than ibuprofen? (I do take ibuprofen some of the time, in fact much more of the time than I should, I'm sure you shouldn't continue to take it several times a day for weeks and months on end, but it doesn't entirely seem to cut it.) Or maybe they might even be prepared to prescribe that - it's not going to be possible, by the look of it, to get to speak to any of them before we leave for Grasmere, but maybe they'd be prepared to speak over the phone and then send over the prescription for us to get cashed at the pharmacy there. Perhaps that'd be a thing that she'd be more prepared to prescribe without a blood test. It's infuriating because I get the impresssion, though I'm not sure, that what my GP is thinking is not so much "I don't want to prescribe this until I've seen the blood test" as "I don't want to go on just prescribing things at hazard without bothering to do blood tests, I want the blood tests to be done". Whereas, for both the reasons mentioned, the blood tests just ARE NOT GOING to get done for a bit, insisting is not going to change that, so just leaving me without any treatment until then is just a bit useless.

Is there any reasonably safe way of obtaining Augmentin without prescription (like I seem to remember people have talked about getting azithromycin via veterinary suppliers, although I can't now find where it said that)? I doubt it, but just throwing that out there. We're going on holiday in a week, for two weeks, and my symptoms improved quite noticeably in the last week or so of the course of Augmentin I've just finished but are now going downhill again, and my GPs (who do the prescribing because the PANS specialist is a paediatrician and therefore, bizarrely, isn't allowed to prescribe for adults) are dragging their feet about prescribing any more Augmentin without a blood test. (Which can't be arranged in that short a time, and anyway if the symptoms continue as they are it's going to be very unlikely that they'll be able to GET a blood sample UNTIL I've had the antibiotics.) So in about a week we're all going to be in a hole.

Sorry for the delayed reply. I've done a little looking up and rather than the 2015 study with Dr K mentioned by Albymom, I think this may be the one my mum had in mind: Randomized, Controlled Trial of Intravenous Immunoglobulin for Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (Williams, Swedo et al., 2016). The gist doesn't, in fact, seem to be that it didn't work, but rather that there was quite a decent improvement (average 24% improvement versus 12% on placebo) but the difference between IVIg and placebo wasn't statistically significant with the small sample size (35 patients). They also drop intriguing hints, saying that they'd like to try to develop tests for who would respond to IVIg, implying that some responded much better than others. Pity there isn't a full-text version availiable, I'd have liked to see more details of what they meant by quite a lot of things - and also what the pattern of individual responses was, not just the average: was it really just a small effect for all the patients, or was it that some had a large improvement and others none (because they didn't have whatever underlying immune status the IVIg is supposed to be repairing)?