Fixit

some do better on biaxin for myco..though you can use zith.. i think valtrex is good if it is viral...maybe you could up that...though val does not treat all viruses..i don't think they know which ones it works on exactly or not...as it may help with others besides colds sores jmo

i do think that is a good idea to get panels done...then you have an idea what to really go after..... but start with those that are typically listed here.....you can test till the cows come home...start with some of the more known triggers...and check vits d, b, ferritin, mag thyroid...things that are common and help support immune system if you have been doing abxs you should check liver enzymes when you go in...every 3-6 months....most children don't have problems as they process stuff so fast...but you can be sure and feel better about how you procede include igg subclasses and cd57(labcorp only) and i think you know the other ones.

ok...my ds's are ticcers...sot that is the mainm, only symptom we work on...others like handwriting which stink i can deal with..and if he has other issues i can chalk them up to being what ever age, or being ill..they are so subclinical, i have a hard time noting them as a problem but before i go to far let me ditto Vickie...no matter what doc you go to you are your own and your childs advocate... the one i am on journey for is oldest 10 to be 11. i think you kinda know my story... so..after about 10 months of onset and no one giving him abx and trying other types of tmj and brain balance...we found high myco p.. start biaxin and steriod burst(5days) at same time...about 2nd day, i think i hear screech..by 3rd day. we definitley have screehces.... now was it the biaxin, steroid, herxing, yeast..idk.....biaxin in used for lymes...steroids lets lymes propigate..from what i understand there is herxing and woould not be surpised if that were true for pandas too... steroids really let yeast take over...(mind you all the years that ds has been on abx ..i did not give probitots over the course of his 9 prior years...so i am sure his stomach was a mess going in) it got pretty bad...screechs would set me off balance, ears ringing, of course crying..including constant movements then 3 weeks post...it all calmed down to almost nothing..then 4th or 5th day it all rebounded... the only time the screeches went away was towards the end of vanco or clyndamiec which we did 3 times...so we had 3 weeks reprieves each of those times we were denied ivig in may-june...thought that means ,which i really felt would be better was to go for pex.... per waiting for an appointment...we did a taper...i thought that might hold, less reboudn with taper..but now knowing about yeast did it with diflucan... well it was beautiful...as we continued it just got better and better, to virtually tic free...then school started one week after taper and things started to come back... i do think a taper can work...i do think as a mom of a ticcer that i would strongly suggest doing difucan with it...i would strong suggest being on abx for a month or 2 prior to steriod... why did ds come back...idk..after they came back i put ds on list for pex...and had tonsils out...things got better again and thought maybe that was the trick..but it could have been the clyndamicin... we are currently persuing lymes treatement...with original test..to me and my docs, we all thought it was neg...now that i know more, i should have done a followup test in a month or 2...and now we have a couple more pretty strong indications that lymes is with us....... AND NOw...when i think back to this onset...(we have had 15 before that remitted with a standard course of abx)....he pulled his hair out one month before he started to tic(he has done this 3 more times since onset which has only lasted a month each and this onsest is going on 2 years)...his reason for pulling out hair is, he says he feels something crawling under his skin!!!!!

You can give milk thistle to help detox liver.. dropp it in a little water..pretty blan

edit from what i understand the la half life is about 14 days...there is one that is cr..not sure about that one.. once a month for 6 months at present..

ds10 had his first shot yesterday per lymes dx... he is stellar when it comes to all the nonsense he has to go through...i am lucky in that respect... so after the shot was done, i asked...now, on scale of 1-10 how do your allergy shots hurt... he said like a 1/2 i said you did really well with that shot(i told him in advance it would hurt..but i didn't know how much more ..at least 5xs)..how much did that hurt... he said like a 10...i said really...(he did not cry) i asked..at want pont do you feel like you'd have to go to the hospital....15-20 then he reailzed he will need more..and he was not happy and very concerned..and i tried to calm him...not crying just worried..and i've been told they make grown men cry!!!!!! pharmacits said ..don't buy more then 1...i dn't know if you'll be albe to get him to do another... i will bribe him if i have to, as i have not had to up to this point. that is all i have on that...has not been 24 hours yet

Peg...i believe you are right...and that sets my conscious straight should i not come up with some other reponse to the 'MANDITORY" ONE SIZE FITS ALL, MEDICAL, CLOSE MINDED, MONEY MACHINE.

I completely agree with you!!! i am trying to listen to my son...he recently said the d is grossing him out...so i may just drop to 1 or 2 times a week. but ds also doen't like things too sweet...and they are the gummies....his d3 came in range but doc wants it higher..his other d is overly high...i don't understand the marshal thing yet...but i thought i noticed an improvement when we first introdcued d as he was sub-low..... it is hard to know a herx vs reaaction when it is not your own body and the patient is a child.... so i do my best..and try to back off and then reapply and see if i notice a correlation.. thanks for the info on c..i forgot the abx/c possible conflict

Geez...thanks phas for putting this post up.. :angry:i think ds10 and 3 will be requiring shots for next year....its feb and now i have to get the fight ready for this...i am still trying to get stuff caught up from last year for insurance..... GD..*(^&)OE*IHOI$%^&()UTR T^$$^*&()__U&H GU&T%^$^T!!!!!!!!!!!! AAARRRRGGGGGHHHHHHHHHHHH!!!!!!!!!! I am so mad and so tired!!!!!!!

i had ds10 80lbs up to 9000mg a day..3 of that liposomal when we first worked up to this things seemed to get bad....unfortunately on the 3rd week ish....ds8 came home with his first case of strep... so at firtst i thought it was a herx for ds 10...but it could have been exposure.... then i dropped down to 4000mg....then pulsed back up to 9000 for a few weeks...and am dropping back to 4000ish and will probably just stay there until further notice(ufn). could be me...but i think it helped..... now ds8, my new ticcer...was able to tell me acouple of nights ago that he noticed when he took the liposomal.....it made his tics worse....Now it is GROSS and kicks up my gag reflex...so it could be the anxiety of getting it down...or the c is herxing something....i dnot know why but i don't think it is really makeing it worse overall. things are going well here currently..i think we are trending the right way for all 3 ds's mind you ds3 came home and was doing this weid thing(it lasted an hour)...i started to panick...but he was playing and just being 3...it pains me and will probably kill me that i cannot just accept that some things are them just being kids.. ps if you research c...you don;'t want it with cal...it gets stored in your brain and heart(what ever dyou don't use)..you want absorbic...and the liposomaal gets intreacellulare.

Prayed for your ds when i first read your post..and i will continue.

Nancy d...do you have other info on the cd57... yours is at 158...are you being treated for lymes too... is that number after treatment... or that is your baseline and see where treatment takes you? Julia can you post the article or pm it to me too...thanks

Thanks...for the info I am so glad your ds is doing so well..and snapping back so fast from an illness!! great news!! well i think he is(lymes) per 3 different tests...band 41+ 39 ind 2 out of 3 dot blots pos and now the low cd57 Ok..i just read that ug is the same as mcg..and if that is the case..labcorp and quest have 2 different scales... labcorp says above .35 is passing and quest says above 2.0 is passing so based on labcorp...he passes 12 out of 14 (only 2 are below .35) based on quest he would still fail 12 out of 14...(only 2 are above 2.0) WTF!!!

yes..that or just a different flavor of pandas...would love to hear how he does on abx...especially if no results at first..3 months later...i thnk i noted something similar in my ds 3 ...weird clingy crying...had myco p i guess...treated him with differenct abx...and the 3 months later just kinda snapped out of it... i think that is how long it takes the b cells to rejuvinate...if i got that right?

THanks phas...soo busy literally running the last couople of weeks...i hope to settle down by end of week...maybe..then on hunt for other 2 pandas....doc would not release labs w/o visit..but did not charge...i think he wanted to help...but that took another hour of my time! i will be in touch soon...still so happy for you and your ds

Myco igg is coming down from 660ish to 348…..still above normal 320 Vit d came into normal range at 42.8 range 32-100 used to always be in 20’s(treating with vit d3) The calcitraiol d is high 98 range 10-75 Cd57 is 16 Igg sub classes… score range Serum qn serum 741 698-1560 Sub1 437 456-938 Sub2 127 163-513 Sub3 26 26-113 Sub4 2 1-121 So even the normal are low But here is the weird thing.. On the sterp pneumo… Draw 5/17/10 he fails 21 out of 24 Draw 8/20/10 he fails 13 out of 14 I didn’t want them to but redrew 1/19/11 Passed 12 out of 14?????? Now the first 2 were with quest…this one was with Labcorp the first 2 were with Quest… The first 2 say standard of 2.0 mcg/ml to pass..and they were well below Lacorps..says standard of .35 ug/ml to pass..what is difference between ug and mcg…and if you were to keep it at 2…like the first 2 tests…he would have still failed 12….. Does this mean he’s getting better…better at fighting strep? Is this because he’s been on azith pretty regularly since Sept.. Is it because I’m treating lymes on my own with herbs the body is doing a better job to fight… Or is the test flawed or scale wrong and should redraw with quest? Will treating lymes also raise his iggs? Does this mean he is not eligible for ivig any more? he is definielty better than he was in May and some better than august seeing llmd what should i ask about biofilms cyst busters

Myco igg is coming down from 660ish to 348…..still above normal 320 Vit d came into normal range at 42.8 range 32-100 used to always be in 20s(treating with vit d3) The calcitraiol d is high 98 range 10-75 Cd57 is 16 Igg sub classes… score range Serum qn serum 741 698-1560 Sub1 437 456-938 Sub2 127 163-513 Sub3 26 26-113 Sub4 2 1-121 So even the normal are low But here is the weird thing.. On the sterp pneumo… Draw 5/17/10 he fails 21 out of 24 Draw 8/20/10 he fails 13 out of 14 I didnt want them to but redrew 1/19/11 Passed 12 out of 14?????? Now the first 2 were with quest…this one was with Labcorp the first 2 were with Quest… The first 2 say standard of 2.0 mcg/ml to pass..and they were well below Lacorps..says standard of .35 ug/ml to pass..what is difference between ug and mcg…and if you were to keep it at 2…like the first 2 tests…he would have still failed 12….. Does this mean hes getting better…better at fighting strep? Is this because hes been on azith pretty regularly since Sept.. Is it because Im treating lymes on my own with herbs the body is doing a better job to fight… Or is the test flawed or scale wrong and should redraw with quest? Will treating lymes also raise his iggs? Does this mean he is not eligible for ivig any more? he is definielty better than he was in May and some better than august seeing llmd what should i ask about biofilms cyst busters

dogs sniffing cancer http://pagingdrgupta.blogs.cnn.com/2011/01/31/dog-detects-bowel-cancer/?hpt=Sbin

Only D1 here too

Are these digestive enzymes.... and how do you dose...before each meal?

there is a thread on the lymes board about the vagus nerve...and we had some discussion about biaxin...you are about the 5th-6th person i can put to the correlation. It could be herx..that is when ds started, about a year ago....i don't think we will do biaxin again as i will not survive it. We had a couple other variables in play...it well have kicked yeast way up too.

screaming at something or screamy/screechy like someone being attached/stabbed... sounds like something with digestion to me for ds it is gut issues...either yeast or bacterial or parasites..any time we did something that would somehow address possible gut issues directly or indirectly the vocals remit look towards yeast, clostridia, parasites, klebsiela(sp)there's also one called gardis(sp)lake parasite..

is this the thread? http://www.latitudes.org/forums/index.php?showtopic=10362&pid=87386&start=&st=#entry87386 ps...from rereading ..maybe you needed b vitamins to help process...otherwise amonia builds up and creates anxiety...if i got that right pss..remember you need 3x more vit c per dosage of nac...ie 1000mg nac plus 3000mg vit c psss...sorry..nac feeds yeast so that could be a problem too..with your results...again the b form of biotin helps to stop yeast from converting to its fungal form

i think those are standard fair...but if you are already drawing blood...might as well check.. ebv ferritin d tsh t3 t4 and if on abx or other meds long term... liver/kidney functions the more in balance the body the better

Why Keflex? so 8 year old keflex 500mg bid......what does he weigh?