Fixit

on streptozyme ..are you talking the strep pneumo...the 14 of them... because labcorpa and quest measure the same..but the paratmeters are different..from what i can tell...so with labcorp you pass..with quest you don't

i don't get it either...if you see my other posts...ds has lost so much ground once we started abx combo...and my ds had his tonisls out in sept...and did better after that..but not to full remission...i didn't even think about the iv abx!?!?!?!..he was also on hd clyndamycin post ta for about a month...

Michael..SOOO EXCITING!!!! Do you feel that you are close to end of treatment.. has your body responded correspondingly!!! i guess i'm asking if you agree with your doctor. Thanks llm and i didn't check to see if it worked when i move it over...

LLM...i'm stealing a post you had on the pandas site... thought this might be useful for lss

So are you thinking that if chronic infection...not autoimmune response is the culprit...that ld ivig would be in order.. or that no ivig at all is good... i know you are theorizing

haven't read other posts... like button, mags...can keep a few in my car or bag to hand out for those remotely interested.. i assume less costly if lost..or if want more just to spread the word and awareness...and as i push onto to someone...if they chuck it...its only a few$..not 10 or more as i suspect and i am not one to wear logos of anykind..but i would personally as i have a vested interest..and i don't know that others would wear it...but i think the smaller stuff is a better starting place if you are asking for opinions

another good find!!

Thank you..i pulled myself together...till tomorrow. On another topic..pollen count was up to 100 here in GA..by now ds would have bloodshot eyes, purple samsonites, etc...he is doing great in that area... I could kick myself for not having done the shots sooner....how many episodes we could have avoided....it's a decision that i understand can be hard..but i wonder for those who did not react well, if there were some other infection or exposure at the time... though some may say i am currently, constantly stimulating his system..... but to have him breathe and not look ill...and we were also in such a great place 2 weeks ago..for ds,,,i think they have been very good!

thanks ladies... i needed to go for a drive.... no the screeches are either disibosis of some sort or herx..that is what beals thinks too... zanex is to try to reduce potential anxt...so as he goes to school and becomes more concerned about tics probablay, innevetiableily (sp) too tired, ..become worse..just trying to see if we can take edge off...some tiredness with it...seeing if i can figure out something for him...he LOVES school...this was the first time he has ever asked to not go..

How do you hold when your ds throat is raw inside and out..(from screeching/screaming) he stayed home from school yesterday, he felt he could not restain them at school all day, as he had done earlier all week.. stopped protocal wednesday evening to give him a break and see if we can stablize before proceding...he is on low dose vanco and clinda...and the cholestramine in eveing... started with 1 drop of samento today.... ( i don't want to abandon lymes..i don't want to loose time) my ds8 has his friend over..the friend who's both siblings were going to be in swedo study but couldn't do to logistics...he says to ds11...why do keep screaming dude...mind you, this is even with him surpressing.... lismom..I AM SOOOOOOO GLAD YOU ARE SEEING LITTLE WINDOWS..oh so glad...i need to hear this....i so want, in a way, for the oat test we just did to tell me that his gut is fine and that SF is right ....but as i sit here and type with tears hitting the key board...i just want to put ds11 on steroids(i'm not, not for awhile(((as i do think there is some lyme product in him)), unless we can't get this to settle down in the next couple of wweeks).....it's so bad..... and why did this other mom get a doc who sent her to swedo..the same exact time i started with my ds and have been poo-poohed the whole time.... I am so happy for all the great posts, it gives me hope...and i am jealous...and i am not a jealous person..of anything but healthy kids!!! ps doc b in md started ds on zanex

ok..jumping in... the cough???? ds said today..that the last 2 days...i am using his words,as when i tried to correct them he wanted to be sure i use his words (maybe i shouldn't have told him my sister worked in a gp office and was told to reliegh message exactly and not change the words, as when you do it might change the meaning) anyway...his breathe is LACKING...and then he has to cough, to sort of clear the air, then he is fine??? my son presents with TS ..that is it...the cough coinsides with 2 weeks from Bicillan shot..and we had started the hd aug/zith combo the next day? Any thoughts? ps..i have not seen or heard the cough..i assume it is spuratic 4:30...it stopped..i asked if still happening...he said no...so some on thurs and some on friday

I SO NEEDED THIS!!!!

Thanks for posting your childs quick response to new treatment... So exciting... Love hearing it!!!

So good to hear...thank you for posting, it also good to hear the different approaches to healing!

I am so sorry you are here..but there is alot of support to be had. i do not know if this will make you feel better or not...but just because someone has insurance does not mean they will get coverage for ivig... hopefully the abx will start to put a little dent into his condition but it will probably take more than a week or 10 days... and the dosage has to be high enough..and sometimes certian children respond to one abx more than other. there is a pretty good list of things you should check, to see if your son has a condition or infection that you can find, that he may respond to with certain abxs, before ivig...jmho

Browneyes..i have not dealt with this. but wanted to say i am so sorry and understand wanting to break down... YOur a mom and that is your child. You are doing all the right things and it just might take a longer time than any of us like.

Good job following through on your hunch... mind you ...even if it didn't come up pos...it still sounded like more than usual...(this is more for the parents who read and don't understand all the underlyning, false neg results that are possible) just found a note book....dated oct something.... ds starts to tic....take him in the next day...swab neg.... i take notes every day for another 5-7 days, something isn't right...take him back in...wha, la ...POSISTIVE...the tics start to come before the cultures can show i've said that is what started to happen, so it is nice to find the notebook!!!

Ditto..first draw..ds dope 1 =2000 second draw=4000 ithink... doc said same and 2000 is high...my ds pretty strictly a ticcer

i have never heard of "thigh pain" with flu...not to say it can't happen.. general slow, sluggish, achy (if you want to call it that) malaise. i think you have been dealing with a ramp or herx each time you get it or treat it..JMHO.

you know...oddly enough ds was skin picking for awhile..HMMMMM... AND..he could not eat fruit for the longest time, as it made his mouth itch.. i always wondered why he would eat his veggies but wouldn't eat fruit...FREAK!!! but...some time around sept..he started to be able to eat fruit.?????? he is not eating it alot...but once in awhile and no complaints..... that was after the month taper in july..could that have reduced his overreaction to it... when i saw latimer in aug..she said would grow out of it..... did she sublimianlly do some energy mojo on him... he also started allergy shots about Oct and from what i understand reduceing any inflamtion response might help in other areas of inflamtion... CORN!!!..i have looked into it before...he doen'st necessarily care for corn...but if you think GFCF is hard...try going corn free....i don't think i have it in me.... WERE IS THE MAJIC PILL MY DS CAN TAKE SO I CAN BE DONE...NNNOOOWWWW YOU WOULD GET ME BEHIND SOME PHARMACUICTIALS!!!!

i would love for some response like that from ds....i am not lyme savvy at all and that seems like a herx to me...and besides all else,drink, drink , drink

So is anyone here dealing with tics... i will sell my house...which it feels like it is getting close, to heal this family... Does anyone see glutithione help in the tic area.... we have done Nac..with no ill effects..i think..to help with some trich...but nac can increase yeast/feed, create candida and we are having some gut isssues... HOw much does the this stuff cost for the liposomal or the rub...

yes that is a great idea..sorry i am foggy..wasn't thinking out of box ....there is also DAN offic of bradstreet and rosignal..very helpful in melbourne.fl.. my friend gave me name of 2 peds, 1 rheum, 1 endo, 2 cog/behavirosal, 1 psych, 1 ent..though not sure they play in... her son had tics and daughter ocd.anxiety

Hi MOM.and EAmom... i am not sure if that was the psychatrist i called..i did not think my ds needed a pych doc, but if willing to accept pandas then maybe could help me else where... when i called office...they had no idea what i was talking about... again might be different doc...but just see if the doc has any clue...i did not feel like educatiing someone and then have them tell me its controversail.... i have a great ped /gp in alpharetta..not an expert, but a believer and does what he can w/i parameters.... oddly ..my ds8 is friends with family who was supposed to be part of sweedo study 10 years ago....so i have some other contacts she listed for me...but have not followed up as i am going other directions currently... if you want to give her my contact that would be fine...

completely understand... and...for my ds ...against most advice i had to start my son on singualair and the procede with allergy shots....not decisions i took lightly..... but i weighed everything...ds does not have mood issues and started with low dose of 10 mg for 80lb kid...and have since with seeming success with allergy shots..lowered sing to 5 mg...will keep him there for allergy season and hope to remove it entirely around June