Fixit

Now that i've taken a breath... i agree with faith in that this may not mark strep (but it may) it might just mean you are or were fighting something and your body can't stop... but i wonder if the camK might be used in congjunction with that urinary neoptrin test...which is a inflammation or autoimmune marker...i forget how scott put it.. it's weird they are both high for ds i'm gonna try to step away from the board for a couple of days(maybe just a couple more post )....i really need to get out of here if i can!!!!!

my apologies again,,,,but i seriously need to rest i think...and i can't seem to follow anything through.... is this what's being said... you have or want histaDine...but it needs to be converted to histaMine.... our you are lacking hista D or M....(which one?) but what if you kid has obvious allergies...but no signs of vitamin defiency in the B family...... is it also being suggested to drink more milk??? I am certifiably delirious so please be kind

Remember when i said ds camk came back at 105 back in november..... and everyone said stay positve...and eamom said there was 1 kid with a low score below ds that was still pandas and then i think buster found the paper about taurine effecting camk... and i went back to check ds aminos and they as per the progam i was doing.... i will say that ds was better at that point.but not great..... well his draw from 4/22 just came back Cam Kinase II score 160 so was the taurine just masking he number.... was the taurine helping.... was it just holding it at bay...because to me we've only gotten worse since onset.... would our reading have been lower at onset...or was it just dropped during taurine use i think who ever found that paper needs to forward it to cunningham...i did once i saw it, in regards to my son, Alverez said i could retake test(which i did per scott persuading me, i was concerned i wouldn't see anydifference...and i still held the belief that regardless of number my ds is pandas)... Anyway i don't know how much weight i hold and what i want to say is no matter what the number is, you know your kid, you can't just rely on tests, is what i want to scream.... AGAIN what do i do with this... ANd i want to scream...don't leave out the kids with TICS...if he has any ocd it shows up as compulstive tics(maybe) and he doesn't like his clothes tight...Otherwise he is funny, smart and good at school, with some add/adhd issues, that he seems to have grown? out of mostly...i think... What do i do with this info??? again sorry i am so tired....

A)well it's in relation to his very hippuric acid...which is probably from abnormal microbial overgrowth..... other indicators would be cranberry juice -no outgassing as in new carpet,materials - no a very smart friend of mine helped me last nigth go over some stuff so i feel better. and he also suggested what you did(are you very smart too ) B)i think there are several reasons they may perscribe spiro..... but like you...i've gone to pediatiricians etc...they take labs .....son falls outside od parameters of some and they say don't worry about it????? why did you take the test then...if there are limits and kid falls outside, shoulnd't we follow up, retest.... especcially ,like his tsh always was a little high...but it was not crazay out of range but out of range...every year we tested???? finally this year my endo and newer ped said yah...this needs to be addressed.. All i know right now is i am so tired...i think my health may be a little off right now.....its hard but i may have to just go with my docs guidance for a while and stop queistioning everything....its hard to let go....we are paving the way and in some ways we know as much as the docs... but we are getting some good traction on this board with our docs and i may have to let them guide me for a while......SO HARD... i do think these docs are the right track compared to "traditional" docs and i feel alttle easier at letting go, because we have the same direction Do you know what kind of bacteria? If it's clostridia, it's spore forming and you may want to ask the dr. to prescribe 2 rounds. We've had problems in the past with the bacteria coming right back as soon as we stop the abx. We've had luck doing 10 days on, 5 days off, and then another 10days on. My daughter's neopterin/biopterin profile was normal. Do you think this would mean that she wouldn't respond to spiro? I've talked to a couple of dans! about that test and a lot of them say that a normal result on the test doesn't necessarily mean anything. I like how they say that after you spend all the money! -Amber

This is very interesting...i'm still VERy Tired, so if someone can put this in easy terms if you have allergies to ALL pollens, cats, dust mites.....do you want to add histimines or block them...? i'm not getting this.....or you may do the inverse depending on you IG g or e...... when we would get remissions, we did always get one onset during the spring.... MILK??? I love milk and so do my kids......but even if you need histadine, doesn't it create more flem.. or is it the histamine that creates the mucus.... are we talking 2 different things...histamine,histadine??? Again sorry...so tired....

This is a good one....i 'm tired and not as sharp on the science sturff as others but there a couple of threads and stephanie2 and someone else talks about pecid a/c and something (aslo per scott smith) being histamine blockers... i hope that was coherent... very tired... More from the NEJM. Hoping someone here can make some sense of this info. I wonder if at times the body over compensates after a bacterial/viral assault and depletes H3 from the brain in the process? Again, just thinking outloud and posting info for the record. http://content.nejm.org/cgi/content/full/NEJMoa0907006

Anyone else take vancomycin for bacterial overgrowth? ds is supposed to take it for 2 weeks...

Amen sister!!!!

THat doesn't sound good....i'm supposed to start vancomycin tonight.....i am not up for it!!!!! seriously...i just want a week to not think and sleep through the night.. i don't want to be around my kids or anyone during that imaginary week....

and not trying to beat a dead horse ....but maybe just that one family has that problem and that's their trigger....or maybe that's not their trigger and just another problem that that family has ....

I would agree with Chemar on this one.....but maybe they are saying it may indicate a histamine sensitivity setting people off...which is kind of what this board is all about...what sets people off..... like why alot of us seem to have exasperation during different pollen seasons or reactions to food and milk... .DID i even make sense?...if not ignore....its just a big circle of different sensitivieites for everyone..... if I am reading that correctly, this mutation was familial and the other TS patients did *not* have it???? so I am not seeing the "clue to Tourette Syndrome" there???? unless I am missing something?

Another great post!!!!! What a great board!!!!!! along this line of thought.....maybe those of us who are healthy, may want to remember to donate blood....on my list is to call red cross, but i may call this center since i'm O- maybe they need it for something more particular... i used to give all the time...these last XXXXX years i've been a little busy.... my ds hasn't had ivig but trying to pass what i can where i can..

my son came up pretty high on the urinary neopterin..... and as per scott smith its a sign of inflammation and that the body is fighting itself..... he is suggesting i give ds 25mlg of spironolactone range is 120-280 ds came up 953. this has been known as a marker for lupus, autism, ms, hiv....going forward, could this also be a marker for pandas??? http://www.metametrix.com/content/Director...pterinBiopterin here's something in relation to infection http://www.springerlink.com/content/n1766772r2311520/ same as http://www.ncbi.nlm.nih.gov/pubmed/2314009 plus my kids bun is always high http://synapse.koreamed.org/Synapse/Data/P...jkms-21-678.pdf on spironolactone http://en.wikipedia.org/wiki/Spironolactone http://www.drugs.com/spironolactone.html any thoughts or knowledge...i will take input

I am not the expert by any means...but i believe any thing you see might be from yeast.... i think someone in the book about natural cures for ts just had to clear up their candida and life was good

FANTASTIC!!!!!!!! CONGRATULAIONS!!!!!!!!!!! Thank you for sharing...I hope WE all hear more from you What a wonderful post.....

Congrats!!!!!!!......

i've been trying to read up on this and i've read about male breast enlargement i see a death or 2 reported,,,but they may have had other conditions...not sure.... lupus..and your usual list... i dont see anything about" immune modulating benefits" or anti inflammatory effects???

so the birth defects were from the mother taking spiro while pregnant....not because the man took spiro at some point in his life???/ how are you doing now with the cysts?? preganancys could have changed your make-up also i guess??

would you call it pitpanese...

Well done Stephanie!!!!!!!

All the posts add up to continuing my everyon'es eductaion...great post....

and not that this would have anything to do with spiro......but... momwithocd posted this link in regards to inflammaiton and purberty....but it talks about low testosterone and Mild hypoandrogenism ...if i'm readng it right... http://www.eje-online.org/cgi/content/short/149/6/601 just get so nervous doing anything

thanks for summerizing....that was a great summation and perspective.....

Hi Stephanie.... thanks for posting and keeping us updated....i like all the new info how long do they/you think you'd need to keep your ds on the spiro?? i have questions and concerns abouot spironolactone. from another post, i heard it lowers testosterone.......???? i can see how that would be good in one aspect...but overall....???? ds is 10 and obviously would be entering puberty....not that this is on our list yet..but always getting ready for next step.... would that effect his height...would it effect long term sperm count...is there any info on that... in paper you posted it said side effects were minimal....but what were the side effects.....and what is considered minimal.... somone who should have been 6ft ends up 5'10.....or do they end up 5'5 and thats minimal compared what else they are dealing with??? or is just more sleepy and other things????? Buster have you looked into this....or can you, or anyone who is good at reading or researching such things......