Fixit

the florastar kids packet...does that have to be refridgerated? or you don't sweat it..as it's only a couple hours where do you get those?

fixit- I take florastor/Culturelle while on doxy...just 4 hours apart. Do you feel differently? Isn't there a potential of die-off with any probiotic? Thanks Just want to mention that Milk Thistle should NOT be used if taking Flagyll. I know some are treating with flagyll for the lyme...so thought it deserved being repeated. Thanks for the reminder on the thistle/flagyll i'm sorry ..i need to edit..its diflucan and sach that are bad mojo ...i don't chance it...when i have to use DIFLUCAN i don't like to give probis with abx either....but during the week, if i don't give something before he leaves for school..it's 9 hours before i can get them too his sytem...and not sure if its another 30 minutes before they, open up..so to speak....i have read several times about those 2 holding up and not so much die off reaction...so i'd rather do that than have his system be naked all that time, as i know he has some gut issues... on the weekends....i do wait 2 hours..

1Surf.... i have constant eye now on the gut.....realizing after biaxin and steriod, and ds steep decline..it could be his gut, herx, or other...i never watched the gut before with all the years of off and on abx.... now, even when not on abx..we all do probi's i give sach b or a culturelle with the zith..as it can withstand the zith,.. you don't want to give those 2 when doing diflucan..as some conflict of interest and then you get die off from the probiotics you are using.... then i give more probis after school.... and more before bed to give tummy alot ofhlep....i rotate various strains...to keep a balance...nothing scientifc... ie 2 of this kind now...1 of these and 1 of these...oh i haven't given this one it 2 days lets take 2 or these... ds takes between 50-100billion units a day.... i can only detox with clay on weekends... the parasite blend i am using again helps with detoxs...so give me oportunity to raise abx to 500 while on it...has milk thisle and wasabe..and treats candida.. bid it is 2x's a day tid is 3xs

Hi DeDee.. i remember reading your posts before i ever joined...and seeing your name i would peek in as my son would have an episode..but at that time he would quickly remit with standard abx... and i was crazy enough to think..well..maybe that will be his last one...and go on and have a life... well about the time i signed on..you were fortunate enough to have healing...and went mia..that's good though.... anyway...if your son is on daily abx...who is prescribing...maybe you could contact them..that would be my first call..obviously they know your son...and pan/pits run in families as most conditions do....would not be a far stretch to assume the same condition for your dd... if you don't mind me asking... how long after you started abx...did you start to see some healing... and what age and what dose?? all info is eye opening/ and sometmes the key for someone God Bless...i have 3 pandas..my only non-panda went panda before christmas...i feel ya

wendy..i just went back to read some of your story. your 10yr son was on 500mg zith bid? how much does he weigh...that seems really high...no wonder the stomach issuses... my 10 almost 11 weighs 82ish...and a normal dose would be 250 and high is 500 daily.... it may take longer but what about 500 instead of 1000mg.... i'm very caustious too, with concerns of cdiff, candidia, etc.. just thinking... i don't think i see much with 250...but when i get to 500..i think he gets better..but i haven't kept him there longer than a week 10 days.....my hope is to have it at 500 for a while and see what kind of results i can get... or is there a reason for that dose...would like to hear

i think the mg is enough for the 50lber...question is,,is 2x a week enough...idk if you want to start out there...and maybe ask for 250 every other day...keeping dose even in the system..again idk

OK...LOL

so i guess its good to have a starting point..something to measure. how long does it take to get back?

I don't have any answers, but glad you found out and can start the healing process!

Thanks Michael, i really appreciate that.

both... did 2 draws... 1st one he was not in exasperation..pretty mild tics, but not 100%..and to me his reading was not in "normal range" and that should be the clue...luckily doc k doesn't rely on that test and relies more on history ..and gave me confidence to push...which i probably would have anyway, once i picked myself up, based on my ds prior history and i know what i have witnessed the years prior 2nd ,,almost or was full sc body type movements, vocals..nearly incompasitated.... i wuold hate for a child to be that severe before being diagnosed!! i don't feel need to test other children..it runs in families and all episodes are with illness.... i hope they use as guide...and go same route they have with lupus and ms..though i hope and affirmatory test comes in ...or they read what they have with a wider scope.

Fat fingered it and just lost orignal post...Sorry edited 1/22/11

Seems like pandas to me.... you can slip back a little.and hopefully keep progressing forward...nothing is really a straight line around here... you may also have to try different abx..too soon to tell.. .with my new panda, tics remitted in 9 days as this was his first episode....we had 3 days tic free..and then got slammed with mono...don't know how long that one will take to remit...my doc told me months for mono....which i figured, but was nice to hear from a professional...but makes me extremely sad. ps..mono may have been the trigger all along...as he never had strep before, that i can note...and his first strep was 6 weeks prior to mono..and i think it can take that long to get igms and symptoms strep and mono have a high co-infection rate more in...if you have mono you have strep too...not so much the other direction

I have a dream…. To wake up and have my room clean.. To go into my closet and have floor space to walk on and have it purged and organized… I have a dream …. To not call any doctors today… And skip the pharmacy drive through…. I have a dream… That my floors are mopped…and it doesn't look like a tornado hit. I have a dream …. To not have to put my specs on to read lab reports and food labels. I have a dream…. For someone to have organized the labs, insurance claims and paper work I have a dream… To not have a degree in strep, infectious diseases, immune markers etc... To not collect phlem, fecal matter, or have that precious morning urine cup fall into the toilet… I have a dream … To not have to educate family members and doctors about pandas only to be looked at like I have ten heads I have a dream… To go back to the days of no responsibilities ADD your dreams on here

Ditto!

Dans use them to see if there is inflamation..and autoimmune response/activity..ie.hiv,ms,couple others my ds neoprtisn were almost 1000, ..he said if they continue to climb...he would be very concerned... as they have noted correlation with seizures with extreme high reading...weren't in seizure range, but luckily we got them down My ds is a ticcer

I pretty much agree... the real problem is..no one really knows... ds vocals came in when we started biaxin and a steroid at the same time..not having been on a steroid before..i think he should have been on abx for awhile prior... ds shortly after that was tested with igenes with some pos and ind readings..band 39 being very indicative... did not follow throught till recently... vocals always remited with vanco (gets in the gut) but came back each time...and we did another abx that did well but did not hold... did parasite cleanse in dec and thing on the vocal range are very good.....that leads back to the gut area... there is a thread on the lymes side that talks about the vagus nerve and can be inclined..i believe toward some explanation of vocals.. when we met our first DAN..he even suggested gut/vocal correlation

It seems like everyone is crashing...i was holding well with a new panda kid for christmas and original panda holding steady... but last night and today i have lost it.... a couple other moms i just talked to are crashing too...i will vent more later on your thyroid... i find it better to split the pill..1/2 upon waking..and other 1/2 before lunchish...lets say... i thinkt that will be the new way to take it soon..my docs are listening to me i told my docs for years about taknig it..feeling fine..even zesty...then complete crash..cant stay on my feet, have to get horizontal...i think the rush of hormones all at once is too much..split it and it keeps it more balanced for the day.... i find

Ok...ds did this for about a week whenever he ate...that's when we started looking into the tmj apparatise

deleted..duped

first omg...i hate typing a long thing on here and it gets lost.....i should know better and type on word first... Nancy sorry i didn't see the post before... ds has curled nails that once the whit part starts..it just kinda hugs his skind around his toe...like if you dipped it in wax...so weired..thgouth that was from hubbiels side...all my dss have that...showed doct the other day when i went and they said...look at that..hmmm. ds ground his teeth so bad as a child it got to the nerve and it didn't look like he had teeth..just a small crescents in his gum line...we keep an eye on it as his adults are in...and he used a guard for a while...i grind like a feind too in getting ready to do dot blot..my doc would not add another abx to challenge/provocate test....from what i heard you need a different and combo to do this test right...and my doc did not want to do anything other than the 250 zith he was already on.... so when the test came in...it suggests several herbs...and some for specifice parasites/spiroketes.... so i did my best guess..and i actully think i targeted the wrong one...did understand what band 39 was.... went to my herbal store..which i can't say enough about...so knowledgeable...and went for it that way...adding the herbs..giving it 24 hours before 1st sample and so on.... test came back 1 and 2 positive..3 rd neg.... but by the 3rd i had upped the zith to 500 for 48 hours alreday...so maybe that killed it all..maybe that made them rund and hide... i don't know enough about the test...but maybe there were some but not enought for a pos also that 3rd test..i had to use a cup i washed out as ds dropped it in the toilet before he even started to urinae on the 1st sample...called igenex..they said wash it out and let it air dry..idk... if all 3 were pos that would be pos per cdc.... and if ds39 was pos instead of ind he would be cdc pos too from what i hear 1 pos on the dot blot can be considered pos can you imagine the result with the right abx.... or maybe he's just really infected? the one lyme doc i talked to for 1/2 a minute said you can do this test 15 times and will come out neg..you have to catch it in the right cycle Pacific i hope that answers some questions... dh left for a week...i am kinda down..realizing the week ahead...still concerned about ds8 panda...doing better...but just need reassurance and will post tomorrow about him....need some hand holding..and don't know how i going to handle more than 1 kid like this and we haven't even hit the teen years yet...

I am just kinda scimming this thread..but may now have to read it all.... Nancy that is so great..i am misty over here....thanks all on this thread as i am sure i will enjoy reading the rest

I am so sorry for all you and your ds are going through.... i have no real info...just some questions and thoughts... have you tried abx and what dose and for how long? maybe you need a different type/higher dose/longer term Do you know of doc latimer in MD..she is neuro and treats pandas sounds like nancy D has a great contact to pursue God Bless

if for instance he is on AUg...and its beeen several days...it could be wiping everything out and letting fungus get in his muscles and joints...happened to my ds(ps he had also been many abx for many years w/o probis as i did not know)...told he was allerigic to pen based abx....but if you give diflucan with it there should be no problem... thats is that abx is one of choice....i don't put ds on aug unless i have to because i don't wont him on diflucan long term...it's only when i feel i need that abx... unless i come to find out maybe it is a cross reaction for ds and is lymes related/too...just starting that journey

IDK...but this is where i get concerned about the test being the be all, end all.. i think it should be diagnostic/history based and cunningham as a tool...like the aso titers.a and other things..