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Hi - thought this was interesting http://www.healthiertalk.com/hidden-causes-your-chronic-cough-1350 I was looking for info on why B12 is activating (I read it increases histamine but still don't really understand it so if someone can explain it to me again that would be great) and came across this article. I haven't cross checked it but thought it was interesting....

thanks - will do!

LLM - can you give me the name of the yasko book and dvds not sure wghich ones to order thanks also pm'd you asking same info

Hi- for those who might be following the methylation discussion... we had our dd8 tested for this polymorphism and she came back a compound heterozygote for C577T and A128C on the back of this, we had ds4 tested and he's a homozygote for 677TT (I think that's the nomencleture?) we're off to their PANDAS savvy ped on Weds. I will ask her experience with her other patients with MTHFR, what improvements she sees with supplementation etc. Will post if anything new gets talked about....

Excellent. Congratulations!

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Thank you all. I know I have no right moaning when there are parents of PANDAS kids, not to mention the young adults and adults on here with PANDAS, that go through much more than I do. Your kind words and about 1500 calories of junk food :-) have got me back on the horse. thanks....

I've had enough today. DD8 is good so I'm thankful for that but ds4 is not so good. I've been spat at, hit, punched you name it. I'm on tenter hooks taking him out 'cos when people comment or, god forbid, try to touch his angelic looking curly blonde locks, he lunges at them saying horrid things, that thankfully, most don't understand. A minute later he is sorry or calm again but I never know when the next whirlwind is coming. Dh doesn't get to see how bad things can get all day long and doesn't seem to get how tiring it can be for me. I'm off to the kitchen for some comfort cupboard-foraging, I just thought folks here would understand how helpless and miserable this whole pile of crap makes you feel at times. Thanks.....

Hi Momwith.. there's also a link between homocysteine and the NMDAr. Don't undertsnad it yet but it's all very inter-related. The drug mentioned in the last article I linked from 2011, memantine, is used for Alzheimer's Disease (AD) patients because of it's benefit at the NMDAr and reducing excitotoxicity believed to be due to glutamate but also has that cool effect on the BBB. But the link between homocysteine and AD and dementia in general is thought to be due to both the effect that homocysteine has on the vasculature and also it's effect on glutamate. http://www.nejm.org/doi/full/10.1056/NEJM200308073490616 Liked this article too http://www.ncbi.nlm.nih.gov/pmc/articles/PMC20882/

here's a cool link on homocysteine http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_01.htm

Hi - our dd8 is a compound heterozygote for the MTHFR gene (2 polymnorphisms on one gene but on two different bits C677T and A128C). We just got back testing on our ds4 who also has the polymorphism but this time he's a homozygote 677CC I believe. These polymorphisms mean that the methylation cycle happens at less than optimal capacity and that can amongst many other things raise your homocysteine levels. Our very savvy PANDAS ped who now has 90+ PANDAS kids under her wing, thinks that the methylation cycle is fundamental to these kids' illness. With this in mind, here's some articles I found re elevated homocysteine and it's effect on the BBB. One of the articles cites a significant increase in permeability with increased homocysteine. http://bloodjournal.hematologylibrary.org/content/107/2/591.full http://ajpheart.physiology.org/content/290/3/H1206.full http://www.homocysteine-panel.org/website_en/publikationen2.php?pmid=21705496 theres more out there too.. this was just a quick search. Might be interesting to check my kids' plasma homocysteine numbers and see if we can correlate to symptoms.

Hi - not sure why but our dd8 can get stomache pain and low level nausea associated with PANDAS/PITANDS symptoms. It doesn't appear to be due to abx 'cos she doesn't get these proph any more, she gets a fairly constant stream of probiotics and it has come with episodes that seem due to both bacteria and viruses so may or may not have had treatment abx. We think it is just part of her PANDAS symptomology but can't work out why. ??? more histamine production but she doesn't seem refluxy, more sensitive to pain/sensation? dunno. Sorry can't help but thought it worth mentioning....

Hi Momwith - I did a quick hunt when we were looking at methylation in general and came up with quite a few studies that seem to point at H1 inhinbitors, the usual antihitamine-hive-type suspects, as decreasing BBB efficacy, whereas H2 inhibitors like ranitidine and cimetidine (zantac and tagamet) increasing efficacy of the BBB. I just did a search for 'histamine BBB' and got more than I could read/digest. If I were going to use a GERD type medicine, I think I would be sticking to H2s which most are, I believe. I had also read in the past, but couldn't find the reference when I went looking for it, that not only do H1 antihistamines cause the temporary type cognitive issues in the elderly that are often cited and recognised but can also leave continuing issues in those especially with an already existenting dementia. Which would make sense if they decrease BBB efficacy. Anyways - not quite what u were after but thought I'd mention it... I won't be using H1 antihistamines on my kids until I can research and discuss further with our Dr (sudden food allergic response aside as we had this week when dd who has severe cashew allergy came home having been given a cashew cookie at school by a parent helper, who when she realised her mistake told dd 'Im' sure you'll be ok" and didn't bother to tell the teacher ) and I am considering trying H2s as a treatment.. if we all get ANAs, does it matter how many? One wolf at the door or many, who cares as long as your door is solid? Don't know if it'll work but it seems fairly innocuous as a treatment trial. I'll let you know what our Dr says and how it goes when/if we try it.

Hi - my dd8 was on prophylactic abx for 1.5 years - diagnosis until she had a serious serum sickness reaction to augmentin. She also reacts to other triggers, so the proph abx did't stop her from getting other exacerbations (a total of a further 5 while on the abx). We found she actually did better when we came off but I can't attribute that to not being on them necessarily, could have just been coincidence. She now just gets abx when she flares unless it is obvious it is a flare due to a virus. Ds4 was only on proph abx for maybe 9 months to a year. He also now only gets abx when we see a flare - we've yet to pinpoint all his triggers but strep and flu definitely cause problems. I think if I knew that my kids were just reacting to strep alone, I'd put them back on proph abx. My dd never seems to get many issues with yeast but she did have slightly elevated liver test so we added in milth thistlle. My ds is very yeasty and also had c-diff so we tend to be more cautious about backfilling with probiotics whne he does have abx. We use Florastor. It is expensive but I think worth the extra $$ over generic. Went to a new pharmacy and the guy that owns it saw the price on the bottle, already cheaper than anywhere else near us, and went "oh, that's too expensive, I'll drop the price" and took a further $10 off! I'll be going back We also use Pharmax HLC as our good bacteria and get ds to drink kefir...

Hi - just a thought seing the note re fungal may be helping.. I think that our PANDAS/PITANDS ds4 gets the marked worsening with illness but also seems to get hyper almost as a sole symptom when we lower/forget probiotics for a bit and he also gets super hyped with lots of sugar. I know he gets yeasty as he's had a swab come back positive in the throat, had gi testing showing yeast and also had it on his boy bits.. poor critter. His hyperness does seem to calm if I get his florastor in and good probiotics (we use pharmax). This doesn't do the trick when his hyper is part of a PANDAS exacerbation mind you or if it does it isn't noticeable. The probiotics don't give me a night and day, sudden calming but things do seem to get better slowly.. so dunno.. it's so difficult to tell sometimes what is doing what but it may be worth a try. I have seen other folks mention yeast when kids get hyper or silly and goofy.....

Hi - I've been down this route couple of times.. also read that ANA in most folk.. so.. on that vein.. the histamine/meth thingy could absolutely play role in BBB and letting those not so rare ANAs in. And from some reading re using antihistamines to help BBB - I think... that the studies seem to point at H2 being good antihistamines to take cos H1 histamine actually increases effectiveness of BBB whereas H2 causes an increase in permeability. Our ped fleetingly ok'd trying tagamet or zantac next time one of our kids ramps up. need to fir that up at next appointment. You can buy them oTC but not in liquid or child size dosing.. need rx. When we try it, I'll let you know if we see any improvement....

Hello One parent reported on here that their Dr, Dr Latimer, I believe, says that she felt it was due to the sphincter in the urethra responding to the excess dopamine during an exacerbation. So if that is true it could have a physical but reversible cause....

Hi - along the lines of methylation and maybe it being an issue for BBB - there is lots to read if you do a search for BBB and histamine. Here's one but there's plenty more http://www.ncbi.nlm.nih.gov/pubmed/10696506 from what I can tell, the few I've looked at and sort of understood, seem to say that H1 is protective, reduces endothelial mediated permeability and H2 increases permeability. So taking cimetidine (tagamet) say, when you get a head bump would be good but not something like benedryl.. not sure if I'm reading the studies right but that is my lay take on it.... any thoughts? thanks...

quick one, sorry, off topic but... re Alzheimer's - I had read that there are researchers that believe rather than being the bad guy, the amyloid plaques could be good guys trying to contain/get rid of infections that shouldn't in the brain. That the BBB is at fault and is letting in pathogens that it shouldn't be and the a. plaques are a protective measure but cure is also kill.... just thinking.. I read an article that cited some neuro dr who said that many people get anti-neuronals - no biggie - but for those with issues it is the BBB that's to blame. My father had alzheimer's, my dd and ds have PANDAS. Could the methylation cycle issue just be having a knock-on effect on BBB 'cos of changes to the vasculature due to high homocysteine levels, so yes some folks with MTHFR get heart issues, some vascular and others BBB vascular disorders.. and our kids unfortunately are one of the-not-so-few with circulating anti-neuronals that opportunistically affect the brain cos of BBB crapness.....? this doesn't account for under methylators mind you.... i'm tired.. off to eat curry and drink mike's hard black cherry lemonade.. it's just soda right?

thanks Momwith... my dd did indeed have some lower prerecognition flares before the mother of all showed up - possibly as early as 18 months or so. Funny you should mention abx and initiating behaviour changes. My brother sent me a link this am about just that. There was also a good study looking at how you could change mice behaviour or character type, I suppose you could say, by innoculating them with the gi flora of other mice... perhaps this is how abx upset the apple cart or maybe, as you say, by affecting cycles such as meth. wish I'd done biochem now

and thanks for all the great links LLM and Momwith lot of good reading to do....

trg girl.. yes I seem to remember seeing that a couple of times or it could have been in relation to lowering histamine. Don't take my word for it though... I'll keep my eye out and if/when I find a reference, I'll post it....

Also - was wondering if that is why some folks respond so badly to omega 3s on this forum. people recommend them but they increase tics etc in some.. not 'cos of the fishy component but 'cos of it supporting meth and consequently is bad for overmethylators...

Momwith - if you get this could you tell me 'cos I seem to have short circuited and burnt my brain out Really tho' if it does make sense and you can make sense enough of it to put it down in type, I'd be super happy. I can understand the cycle in lay terms and the impact it can have on what seems to be spiralling out systems that rely on meth for precursor stages but I don't get the way my dd can go to bed neurotypical one night and wake up so not the next morning. And why does it seem to cause just physical symptoms for some like heart and vascular stuff, CFS/ME for others and PANDAS for yet another subset? Are there other deficiencies in enzymes at play here (and thus other cycles)that cause the various presentations or am I being too simplistic? thanks for any insight. oh and one last question for folks.. when activation is talked about, what would that look like? An increase in symptoms? My dd may be ever so slighly ramping (prodrome ramping that no one else would see) and ds is getting itchy at night again which hasn't happened for months and I am wondering if it is the meth support regimen or other stuff. Could it be B12 activation for dd or maybe the block getting shifted? as always, thanks

Hi again - we have only had c-diff once so can't comment on the recurrence and have only had to do 2 short courses of zith since we cleared that c-diff (with clindamycin if memory serves me right). But re the high dose abx - we have used pharmax hcl at about 30 billion units, custom probiotics 11 strain at about 150+ billion units and 2 capsules of florastor a day on our ds who was 3 nearly 4 when we got the c-diff and used this combo of probiotics plus as much kefir as he would drink (maybe 6oz or so). We didn't see any ill effects but each child is different and ours was older than yours is now....