Fixit

if your taper is done...you might have a little backslide and then go forward...we had sawtooth while on the taper... could it be herxing..some things get worse before they get better...maybe the aug is getting something... are one of you sick, or ill? Have you been on probiotics....adding aug at hd alone can bring on the yeasties... i just read something yesterday...that said..i want to get this right and am trying to refind... yeast either harbors infections or it of itself is an infection or creates infections.....i wish i didn't loose that... azith for some can also bring on clostridia...we had to deal with that too.. it is essential to keep the gut incheck..it is the second brain

PacificMama posted a very interesting explanation of band 41 a while back. The gist of her explanation was that even though band 41 can also be a sign of syphilis and some other infection, these things can be easily ruled out. She said that one of the famous infectious disease doctors in the lyme controversy (one that does not believe in chronic lyme) considers band 41 to be very lyme-specific (if I remember correctly). I think that a child with symptoms that could be lyme disease who is positive for band 41 should be evaluated by a lyme doctor for a trial lyme treatment and/or tested via igenex. The other lyme tests are worthless, wrong fifty percent of the time. Anyone with band 41 who has not tested via igenex is very likely missing positive bands for 31 or 34 that are not on the non-IGENEX tests that insurance covers. The tests from labcorp, quest and other labs do not test for bands 31 and 34, important antiibodies to lyme. Because there is no definitive test for lyme there is no harm in a trial lyme treatment for a child who has symptoms that will not go away. You will get a pretty good idea if you are on the right track once treatment has been underway for a month or so. I think that most people who are positive for lyme are positive for band 41. Maybe PacificMama can point us to her previous post which was so helpful. so the non-believer thinks 41 is very lyme indicative??? did i get that right??? what tests can be done to rule out other things..... i have a panda friendly ped now...he is gun shy of long term abx and is not up all i know(which doesn't mean much) but i believe he would be willing to test for anything i ask.... does anyone know if they can draw igenex in GA...home of the cdc??? ps closest lyme doc i found is in NC...i would go..but been spending alot on this already...if i can rule in/out other things before a trip anywhere would be good

this is very interesting....so even if 41 only had 1 star...and 39 ind i think i need to retest me and ds...i grew up in Trenton nj..right by deleware..even though city i walked along river and lots of deer there in and in pa..we go up all the time... when we lived in Doylestown pa i took a couple off of ds...but i believe i got them quickly....

Alleluia!!!!!!!!!!!!!! PS...do they need kids to observe..i have 3....or do you have plenty of pan/pits in NC .....i sure you do!!!!

not trying to be a nay-sayer... but it makes complete sense... to bore everyone...ds would completely remit with abx week 4...just gone my ds 7 soon to be 8 had mild eye blink for 2 weeks 2x's when he was 3...he had runny nose, allergy type things, i thought it was the benedryl...so i didn't give it for years to him.... now that i know more...i think he had a mild infection, i thought i was treating allergies... my oldest ds the one i constantly write about presented like allergies/maybe..when he had strep...but ran around like nothing was wrong except the 1st 2x's he had it where he had a fever or vomiting ds 3 just had a couple mild tics...needles to say after abx it got better..not perfect went back again with anohter infection and new abx and all is clear....told them he was sick....even though he didn't act it, hoping they would find something each time and they did... my 3 kids dont act sick...and ds#2 has neve had another episode...never treated it with abx...he has had many an ear infection in his life....he would have been diagnosed with transient tic...i say transient infection.. i guess i'm saying not all need abx to clear infection...but i think this girl started to run away after her infection....probably pandas and parents thought it was an unrulely teeanager......who knows

sepsis causing memory loss http://pagingdrgupta.blogs.cnn.com/2010/10/26/severe-sepsis-can-lead-to-memory-problems/?hpt=Sbin gupta sometimes annoys me but testifing about unnone chemicals...i've been saying this for years these 3 are realitively the same http://www.cnn.com/2010/HEALTH/10/26/senate.toxic.america.hearing/index.html?npt=NP1 Of the 84,000 chemicals on the market today -- many of which are in objects that people come into contact with every day -- only about 1 percent of them have been studied for safety, Sen. Frank Lautenberg said Tuesday. http://pagingdrgupta.blogs.cnn.com/2010/10/26/gupta-chemicals-around-us-we-must-know-more/ As things stand now: Out of the roughly 80,000 chemicals in commerce, only around 200 have been tested, and only five have been restricted. I guess I always assumed watchdog groups and the government had evaluated and signed off on the safety of the chemicals we encounter in our lives. It’s not to say that all chemicals are bad. Again, it is how much we don’t know. http://www.cnn.com/video/#/video/health/2010/10/26/sot.gupta.toxic.testify.cnn?iref=allsearch

Uneventful is good!!!! So...your dd has been on abx for 6 months...your keeping the dosage, just changing form of intake ? No...vaccines..., is that indefinitely...as in never again....or did he think in x years it might be an option... and do you have a percentage of improvement...ie 50% better 70% better since starting abx... i guess you are still seeing improvement??? I am glad things are working...keep us updated..

Not claiming any wisdom...but flumist could beeen the trigger...that is now cleared.... now it is autoimmune, possibley....and outside influences are definitely a factor...allergies, others being sick.. quick story... i was at grocery 2-3 weeks ago...i turn corner to a new isle...i smell cigarettes...i see no one, but a guy down the far end, 40-50 feet away...as i got closer, so did the smell got stronger...it did not carry over the top of the isles..i guess these particles are heavy and hang lower and ran down the isle...as i turned the next corner..he did not move the smell was gone though i have not been able to document for my ds specificly... it goes to show you how far particles travel...as humans we can only register certain types of smells..that this is what they are ...there are obviously other things in the air that our brain is receiving, but it cannot register a que of "oh, it's this or that"...however dogs can follow a scent, detect cancer, smell bombs, predict a seizure...it's not that these aren't present at detectable levels...our brains are reacting sending soldiers out to fight in our systems, but cannot tell us what it is"oh, i smell my master come home, i smell strep, i smell cancer" sorry to babble... you do need to address the iron and anything you find..these may help alot... i believe doc t says you can test till the cows come home for cause...do the best you can..and then start to just address his whole well being...obviously something is wrong

on recent thread..there is talk of gse ramping up rage.... the pandas can create rage.... not knowing what is going on with your body...that would make me rage...as i believe it does these kids i would persue all mentioned possible infections, autoimmune conditions, allergies, parasites, immune condition in general..vitamin, mineral panels..there is alot to check...strep titers can be negative and you may have cleared the infection and may have become autoimmune condition this is not a quick process or elimination process either

Yes EAmom..i agree... you go Phillypa!!!!!!!!great idea

when we did burst..it took 21 days and only lasted 4 days...and i think that was post burst... so either way..9+21 =30 or 13 +21 = nov 4 during my phone consult with doc k he said up to 4 weeks post..... again i prefer taper as we've has some lasting results with that..... also as you may know ...you may be dealing with something else that may have gained strength..ie parasit..ie lymes..

can i ask... are you seeing results... are you trending in the right direction.... is there saw tooth with this??? maybe it's too soon to give an update??? thanks ...sorry if i'm making you repeat yourself, i don't recall if you've mentioned any of this ...

Prayers on the way.....

i know this isnt' what you post this for...good readable info but....... " TS runs in families and there have been several genetic abnormalities found in the dopamine family of genes" maybe i'm tired????? i haven't seen anything about genetic abnormalities in the dopamaine family of genes.... there was the 1family that had a similar abnormality in a gene that i thought was closely related to allergies-histamines...not found anywhere else...not any other ts person or family. and another study...where 1 boy in a family with ts.(if i got that part correct) had an abnormality...but again, no other ts patient or person showed the same abnormalities(i believe there were 700 people involved).. just want people to be aware of how "research" is sent out to the masses... unless i missed something else....

do you know the name of the tests you mentioned??

you have given me an "aha" moment!!!!!!!!

Can i also suggest getting a good pan/pit DAN...they are much more accessible and i sometimes I call weekly-bi-weekly..and at the end feel like it was also a mini conseling session in affirmation of thoughts and protocal...and keeps me going We use creations own in fl and scott smith...he moved to nj...and this is in conjunction with the main panda docs(L and B currently.. K and T in past...though no Doc ever goes off my books, as you never know when you feel their guidance may come back into play) ...i feel like i need the bi-weekly contact and discussion on next step....and the use the main panda docs for affirmation of any new major direction change.....everyone is kept abreast of changes made/seen... prayers sent fo all of you

I hate that i am half the mom, mother i could be...i don't know that i would be the best..but i feel a far cry from even being medi-ocre....all of my children have paid for this.. I feel, and know that my children have no happy memories of ME...i am cranky, on edge, i don't want to color cause i have to see if the supplement i just gave is doing something, or was the cause of the change i am seeing.. i am concerned for my other children and their children..... I've heard them hint to my dh that i am meaner than him(he travels, so i am also school marm, cook, bedtime person) when he is home i don't want to be IT anymore, for anything, including fun stuff...and i equally feel ok with that...as my current and only main focus is healer i am drained from the constant searching, watching, waiting, squeezing in daily maintence of life, like meals and try to crab a shower every so often... AND i DITTO every single post made by others here!!! LOVE THIS BOARD!!!

yes to all of the above... my ds is usually less sever in moring...worse as he gets tired or worked up... but we have not yet completely come out from this onset 1 1/2years ago

i usually hang on the pit/pan board...but if you child had an infection..or still has one that hasn't cleared completely...the tics will remain and may take awhile to remit... if you use fish oil...there are reports that it may make tics worse for some peopole... also..i have heard that cod in particular seems to make a reaction..i think sardine/anchovie is a better option maybe try krill if he has no allergies why is he on on the allergy meds??? for the asthma??? if it is food allergies...if i were to try this route again..i would eliminate everything for 1 week...eat rice, chicken, pick a couple of the lesser known allergen vegies..... then add a food in every 4-7 days...you son may be allergic to more than 1 food item...and if you are giving it to him you won't know what is good, or what he is reacting to there is the ELSA test..and a couple others..Chemar probably knows of a couple just a few thing i thought you might start with

Norcal..Can i ask a question? if the sweating is pandas related....do you think it is the virus/strep doing something to sweat glands or the adrenals... or some other mechanism i was just thinking about this...i think this is a silly question.... why do our kids have sleep problems..why does there hand writing stink...why are some sensitvie to light, sound.. that is unless you know something i don't....my bad...

Norcal..Can i ask a question? if the sweating is pandas related....do you think it is the virus/strep doing something to sweat glands or the adrenals... or some other mechanism

i agree with kim...the steroid slowed his autoimmune condtion down but could hold..i would be on abx a while(4-8 weeks)jmo, before starting burst and if you do a burst...as with my ds...we got worse before we got better....but we got way worse and then almost seemed recover for 4 days.... for my ds...he was probalby not on abx long enough prior to burst and yeast realllllllllly took off with the steriod..so we had new problems.... after many more abx's and other things...ds was severe...i got ready to go see doc L...she was unavailable at he time, but got appt in the future.... our DAN knows her protocal and suggest the taper several times....i was scared...but he was pretty bad,,and i figured...we''ll help him as he is in crisis or he'll get worse and time and my drive will find the next step.... Well....i will not do think i can be convinced to do another burst...the TAPER was such a gift..... we had remarkable healing...that lasted till school started....we have been sawtoothing an seasawing ever since.... but we have held 40-80% of our gains...depending on, allergies, viruses, t&A, blah blah blah with burst you can get rebound effect where it gets just as bad as when you started or a little worse..and that should subside if it is from the burst... we got worse before better..but again he was not on any abx prior to starting..and i still think...maybe we have some intracelluar stuff or a parasite going on...not necessarily lymes...(was tested 2 pandas doc say not, but i have not been to a lymes specialist yet)...i think a parasite, not lyme..there are parasites everywhere!!!! like strep!

i tried to look it up... saw quite a few things with mice studies and looking for a protein..... i think maybe they'll name it once they get the final paperwork done...and maybe to figure out who the biggest $$$$ donor is to pick the name busy day...today...lost one that talked about a protein crossing the bbb..maybe will try again tomorrow

i am certain that dh has pandas...still gets strep 1-3x a year...he has tics would like to get cunningham test for him...but ds is priority right now.... we just did 3 months azith...some things have cleard for dh but he still tics... his aso and antidanse still high... i believe after xx it is very autoimmune at this point... we are going to get dh tonsils out...even the ent seemed a little grossed out by dh tonsils...dont know when though have them start with the check list of possible infections...though they may be cleared by now... maybe start abx for a month or 2 and maybe change type of abx to cover differenty types of infection, then try a steroid taper...at older age i don't think a burst would be enough...not even sure a taper would be enough once adult....this is new territory....i am also not a doc... i would like my ds to see doc b or k or who ever would treat adult pandas ...maybe doc L or t is open to it??? michealtampa is an adult with pitands...he started some panda protocal..helped a little... then was diagnosed with lymes..and saw more success with that protocal... i don't want to tell tails, but he is not a spring chicken, but far from being crackety like me oh ..i believe beta-sheyva is treating her 20yr old daughter and fcefxr as well... beta is looking at multiple ivigs to treat