Fixit

ds8 is still ticcing 4 weeks post pos mono test.. i am expecting too much to have it be gone right? all the docs said no rough housing or sports for 6 or was it 8 weeks... back story...11/11/10 pos strep...still thought him non-pandas.. 12/17 thows up...12/21 think i see tic..12/22 get abx and start as per wonderful support here. 9 days later no tics.. 3 days later tics start back...take in has ear infection12/31...3 days later 1/3/11 glands like lemons pos mono so...just need support in that i am expecting the moon... oh ..ps threw up yesterday all day...someone cut me abreak!! 2nd anyone use monolaurin to treat viures, inflamation..dosages..ds 8 is 60lbs 3rd anyone deal with mono as an exasperation and what was the time line for remittance...

i also heard something about mint or spermint..before testing i bought something at whole foods called rescue me..natural stress relief spray and there is a little gummie candy ..i might try on ds on a weekend to see what happens...will try on me first as usual...to see if it takes edge off anxious moments...ie for me..getting them off school bus when i am axniety ridden because i don't know how they will be after along day at school nix that..gonna try one now

This all started 2-3 months post strep infection?..yes sounds like pandas to me... it's the anti bodies that create pandas not the strep itself... though for my son..with each new episode...(after the first 2, where the strep came in(i didn't know it was strep, just thought he was sick) and then the tics would start 2 weeks later..not knowing he had strep till i would take him in, asking why is he ticcing..(answer=not sure but he does have strep)) and he would remit with abx... after that...he would not present with illness, running, playing...he would tic, i would take him in to find it was strep again... just found one note book.... ticcing...take him in, not strep.....still ticcing take him in again about 10-14 days later...STREP! what dose is your son on? how much does he weigh?...you may need to raise dosage... you may need to try different abx's...different kids do better on different abx's

PHas!!! I've been waiting, and hopeing and praying for you and your ds and this post!!

just to let you know strep could have been there much earlier.... ie my new panda...had strep 11/11/10...still thought he was non panda... 12/16/10 throws up stays home from school... 12/21/10think i notice i tic (my heart sinks as i thought he was my healthy kid). 12/22 start abx...nine days later pretty sure tic is gone... 3 days form that starts to tic again...take to walk in has ear infection while on abx and 3 days from there as he still goes down hill...comfirms positive on mono test...if you have mono you are 60% more likeyly to also have strep....so was it the chicken or the egg, on strep or mono.. for what incubation period.. strep antibodies/titers rise 4-10 weeks post infection...for my ds8 that was was peak time to slammed witha nother illness once triggered...mono, mycoplasma pneumaae, allergies etc can trigger and maintian episode... allergy season is going to start any day here in GA...so i am trying to brace myself hopefully besides aso and antidnase...you checked for mono ebv myco p igg igm tsh t3 t4 ferritin igenex western blot or equivalant for my ds10 i am sure myco p set off his last episode...myco and lymes have a high co-infection rate like mono and strep

idk if you should keep him on zith, or if it is herx..hopefully someone w/ more info will come in... how much does your son weigh? have you thought about giving some bentonite clay or activated charcoal to help detox?

My boys present with tics..no ocd. JMHO i think tics are under reported...as they "may not interfere as much" (to some) as ocd..and docs, pediatricians are quicker to dismiss tics as transient or ts. my childs used to completely disappear, for ds 10 we are almost 2 years into this onset and looking at lymes.. it does wax and wane per new infections and exposures including allergies. ds 8 new to pandas as per 5 weeks ago...still waiting on remission there...but he got mono and that virus takes for ever to run its course... ds 3 in remission. PS sorry you are here..but hopefully you will get some great leads to healing!

i'm sorry i don't understand....you're saying you don't need as much nystatin but your having yeast (over)growth? or are you saying that the combo of abx now..with the probis and minerals are keeping it at bay

this is for peg and steph.... just another thought on the ocd thing...(ps we don't really deal with it here, but always on look out..maybe some complusive tics) in someways i could completely agree with steph, in that i should just go away if everything is cleared... on the other per saving sammy....if you remember he did really well towards the end...he had 2 months of sysmptom free??? but when he came home things started up again....and she rearranged the furniture to break how his brain perceived things to break the cycle...if that makes sense.. so in that way i could see how cbt would be helpful.. it makes me wonder and concerned as ds8 just mentioned how he can't do his tic right...it is a sensation..but doesn't relent until it's completed or just right...since it's in his lips..its more prevelant when he eats...same as ds10 is trigger by things he does now...not so much just there....but more if i ask a yes or no question...the nod or shake to answer gets stuck in a loop and becomes a tic... Peg...where do you get the kirkman yeast aid?

Swim...i feel your pain.... idk if its herxing but it certainly can be...that is the scarey part.... if your ds has not beed on something strong in a while it could definitley be getting some bad bugs in there... the other side is it could be yeast...clina is very strong..... just from reading your post...if it were this very minute...and the desire to throw fuel on the fire is so tempting... do simple things that you would do anyway...give him some sach balardi..and some aciphidol;us (sp)....wait 2 hours then give some charcoal or benoite....then 2 hours later more probiotics..... i really suggest you keep giving the probitotics...it took me a long time to realize how often an how much.... and we are all on them...and will continue even when not on abx's that is just my thought for now.....the body is just one big eco-sytem....prayers on their way!

cleared some space.. i need a computer organizer to come in

thought this was interesting http://pagingdrgupta.blogs.cnn.com/2011/01/22/a-furry-dilemma-sleep-with-your-pet-catch-his-bugs/?hpt=Sbin

Hi Michael.. I was referring to the thread you had started with a transcript from doc kling... he mentions samento and noni...i have seen it around other places.... But thanks for the posting your experiences.... Not trying to hang you out again...but do you have an update on your recovery... are you 75% or better since the start of your jouney.... and how long ago did you start?.. about a year right?...but how long on the lymes thing and how much from the start of that protocal..... and again...i know no one knows...but based on your trajectory(sp)...do you or your doc think another year.... i would suppose healing slows after awhile...once you off load the bulk of toxins in your system ... just banter...thanks...

Elizabeth...where did you get samento from....online or your doc... my appt isn't till next week and i want to keep the ball rolling.... should i just wait to see doc b... we started 2nd parasite clenase 9 days ago...thinking of adding samento friday or sat..based on reaction in this thread Has anyone tried NONI http://curezone.com/forums/fm.asp?i=1041387 ds does have a thyroid condition and pandas(autoimmune too...so) and also in the thread from michealt...mentions noni.... it seems like i'm a half a step ahead maybe this is the path...picked up noni 2 weeks ago..havent' started it yet for ds...i tried 1 or 2 days...i think on those days i felt better...didin't write it down... i already have 3 journals for my 3 boys... should i add NONI or Samento first

I also want to thank you for deciding to come and join the forum. Thank you for posting such a hopeful story. Continued healing for your son!!

He is obviously a very self awaar boy. He is not brushing this off as another child might. I do think you need to talk to him. Let him know that no matter what he does or what things he thinks about, nothing is too silly, weird, or uncomfortable for him to talk to you or your hubby about. You will always love him and he can confide in you and you will just keep it between you. And if when does talk to you, that that might actually help him because he let it out, and it will help you to figure out what is going on. It may take awhile to get everything right, but you will work together as a team and things will work out. Let him know that there is something going on with his immune system and that the healthier you can live and stay the better things will be...and again, it will probably take a long time..(even if it doesn't, it buys you time in the future) as he gets older you can talk about all the doctors and parents working on this and though sometimes it takes a very long time to get the combination right you wont stop till you get there. Letting him know he does not have to worry about anything at home and that is his safe place and he can just relax and be himself will help him alot. You know that but he may not. And you may have to let the sitters know in advance so he can be himself then too Sorry if this is choppy getting kids out door...

You would have to try to ask him...does it just come out..does it feel like he has to do it... he may not have the words to explain...but is probably a complusive tic

JMHO...if it were just one or 2 of these things..it would be part of a normal child like behavior... but to me, it seems like you may have more going on. Good job keeping a close eye!

OMG..this happened to me about 3 weeks ago in the shower!!!! It was like wiggly fire works..but not bursting outward..more coming down inward. I wonder/ed if it was the HOT water...or hot water effecting some parasite in me! i do get migraines...i have also have blindness migrainse..where you loose part of vision but returns in about an hour... ie you are looking at something...it seems weird..can't put your finger on it..and you realize you can't see half a persons face or something to the side of what you are focusing on...it's not black or blocked out..its just not there... it happened with first pregnacy and a a couple times with each other preganancy...and maybe like 4 other times...but there is no pain for me with those type migraines...i get the painful type about 4-6 times a year since my ...ug um 20"s The, lets call them, spermy thing a couuple weeks ago made me ponder lymes too... i almost want to say i have seen them before..like one or 2...but this time was like a fire work... let me know what you find... i guess i need an eye exam anyway!!

Thanks for coming back with the great info. I am glad you were missing for happy reasons. Living a Life!

OK..new question about cd57... on the thread about Transfer Factor..it was mentioned that it raises the CD57... What about LDN...does anyone know? the guy i went to for lymes and some here have posted that their lymse doc want them to take it... its anti-inflam..and also immune modulateing would that effect the cd57..could it effect it... of course i want my son healthy...but he has been off and on since last mayish... and on it steadily for the last 3 months or so...thats a long time i could see it effecting something.... cheez...it's just like the time we took the first cunningham test..and score was low...found out a coule months after draw that taurine lowers camkenase.... i went back to look at ds aminos and he was on high taurine for 3 months prior to draw.... second draw...no taurine...ds was horrible, cam was high.. So as i type this...and i heard that lymes can raise cam...i wonder if some the lymes docs should look into taurine. another question...can these medications change the numbers artificially, (like a band aid) or is it doing something to improve the immusne system... i cant' say ldn has any effect for ds...origiannly it made him like a disney(blue bird on the shoulder guy) but that is all i can say.. is it doing other stuff...couldn't tell you.. did the taurine really help his conditon...well things were better at the end of the 3 months..but we were also gfcf...and there was an exercise thing we did like "handle" 3 times aday(like the early autism programs)... but that was not the height of allergy season, like when we did second draw..

Norcal...he said/suggested, 75% of those with gulf war or myco (f)i think...have autistic kids.... that's terrible!

Good Job....i tried to email..i think i did anyway...a few months ago..but no reply or auto reply or anything... So what if you give your abx in the morning...would you give benedryl then..or just at night.. I believe the longer you have one the more likely for another...especially as the body gets tired from the constant fight.. Do you know what 6?

we did ours with ped...they didn;'t have tubes...had to order..they had to send to a different lab? they told her it would take 2 weeks??? i guess i'll be calling mon or tue also

I glad for you EM... If i can just detour..but it just stuck out to me... Please, no one throw tomatoes, or kill the messaagner.. but if they are saying those tests can be inconclusive...don't register certain enzymes..still diagnosticly strep... Well..i don't want to say more...(i think diagnosis?history should be prevailing info for this condition) But also that is why, though some cases may not be strep, may not be myco p, may not be lymes...sometimes until you treat, you don't know what you have..doctors prescribe all the wrong drugs all the time because they think it is something.(ever watch HOUSE).. I just want the all the boards to be supportive. And like all that we do..herbs included..you need to procede caustiuously..and keep questioning what the doctors do...and what the doctor don't do..... Thats it..i'm the oldest, so i win!