Fixit

ds 39 came up ind....and i read somewhere it is indicative of BB... what is that, Barbesia? heres' the scoop..still trying to do this lyme thing... my doc did not want to challege dot blot???? ds has been on azith for 2 weeks do to exposure of strep and ramp in symtptoms... the lyme doc i spoke with was..well..i understand their licenses are always on the line.... i just wanted a direction...what abx to try to challenge...she said none... did not want to see us till we investigated further??? how do i do that w/o guidance.... 2 other dan docs did not want to challenge test???? so on my own...i started ds on day 1 andographis and 1 inernal parasite formula....containing..cloves, black walnut hull, wormwood(which is artemisinin)which is what i read is what you want to treat barbesia,milk thistle seed extract, wasabi,enzymes.... day 2...friday i did urnine test.. then you double dosagees everyday our next test is tomorrow... going to give garlic right now... our last urine test is tuesday morning... i would like to get test done to get results, i hope before christmas?!?!?! we are on waiting list for pex..i may have waited a little longer if i had known we had more time to push doctor for abx... he is also on hd vitamin c...9g..(3-4liposomal)...just started that a couple weeks ago and read that c in general is good when treating lymes... the one bit of info the lyme doc did say was that we could do this test 10times and come up neg...still doesn't mean not lymes....we just didn't catch markers...and could well catch them the 15th time

So Nacny...that was glutathione and nac infusion...not just glutathione.... is that the standard...so when someone says they get glutathionhe treatments...the nac is automaticlly assumed?

i am mom of ticcer too...this happened to my ds after starting abx and steroid at same time, after a year of illnesss with no abx.... ds has had 15 other very short(about 4 week) episodes prior to this... so not trying to freak you out...as every child is different we also started this treatment at begingin of allergy season and ds has prettey severe allergies.... we did not get rovery till a short burst..which only lasted a couple days and it all came back we tried other things then about 4-5 months later we did a taper...and it was miracluouls....(sp) anyway...he did not hold it completely but has has maintained some of it.... tics are very difficulat to reel in.... i also wonder if yeast wasn't a very big contributer as steroids and abx reak havoc...so i would suggest doing higher probiotics than standeard doses....get up to at least 20 billion a couple times a day..if not try to get up to 40 at least before bed......your gut is your second brain!!

THanks!!! I needed to hear that.

this statement kinda concerns me....as we are the cusp of all this learning... and who is to deem what is acceptable for the childs future life other than 100% recovery.... that someone may say you are 90% and that is good enough.....i have a hard time with anyone making that decision for another human being... i am not saying that that was what exactly intended by the statement...but as i've said before...who can say that person who has tics can drive a car they are functioning...but they have continuous facial tics...that is ok...what kind of job can they expect..as humans are judgemental by nature...who is to say what a person can live with that and not feel bad about themselvs, when they know that maybe if they had the opportunity to try ivig or pex that they might have FULL recovery..... yet..lets go to a topic that was a little touchy... a woman has a mastecomy and gets recontructive surgery that is seen by no one but her and who she chooses.... sorry ....just being a little defensive!!!!!

agree...and as in "transient tics" very likely an illness related with a noted time of illness and disappears with reovery and if parents doesn't note an illness..it may have been a month or 2 prior so they may not put it together... or a more subclinical illness that resolved itself..

for ds..his igg is still elevated...it made a dramatic drop at first ..but has been fluctuating....but not normal.... he has been off and on abx....not consistant... even visit with doc l, she said how insiduous it is.....i think of any of the organsim this truly has intracellular potential..... i think we are still fighting it...though alot of docs hold no value in iggs...but yet some of the same will acknowlege that you may not get titers for strep and still have it....

I have really been researching vita c...just started family on hd....(liposoaml in the ratio) some stuff for my self that i can see a marked difference..a gland infection that abx has not worked for, that i was probably goint to have surgery on next year... you need at least 3x c per dose of nac c helps you maintin glutithinone http://www.ajcn.org/content/77/1/189.full not saying this is answer for any or everyone..but interesting here so far...more so than OLE

By just posting your healing process you are paying it forward!!! Thank you... Can i ask...if your son is on biaxin, did you think myco p was the trigger...or is that just the one that seems to working for your ds? Thanks..and i look forward to hearing about your ds continued healing!!!!

Maybe you did catch it quick..that would be good... literlly just got off phone with friend who found out she had lymes one week before being diagnosed with cancer...(this was years ago). they treat it with 3 months of abx...but i think with the chemo reducing immune system, she still has lymes... trying to convince her to get rechecked...(now that i know so much in my own mind ) Maybe someone more versed than myself will give you some thoughts....but it sounds like you have it under control!!

don't know if this directs you anywhere...or if its way off base http://www.ionchannels.org/showabstract.php?pmid=18695519

JMHO...they look out of wack to me. so she is not experiencing any problems other than the wacky numbers and chronic stomach ache???...how long have the stomach aches been happening???.... i do understand concern over long term abx...that can cause other problems down the line.... make sure you give enough quality probiotics.... the numbers do look like they are going down....you could wait another month or 2 and see what happens, if they continue to decline and her stomach improves...i would keep a close eye on those.... imo...i would definitely consider removing tonsils...many here includeing my own ds...had ent say they look fine, just to find them pitted, schriveled.etc.....and so would harbor other infections....again maybe wait to see how she fairs in the short term....and you don't want any of the numberous problems step can cause. any results from the lyme tests?

I completely agree....i hope the docs are as open to all the variables as we would like them to be

If i can do a counter-point.... it is not in pharmacueticals interest.... i'm pretty sure abx are dirt cheap....no real money to be made.... here's a part of the dirt i just recently learned...as per doc visit for ds3....and i was whining about my walkin c0-pay of 50-100$$ and second visit that day for same condition i didn't feel had properly been address earlier that day at a scheduled sick visit....(long story ended up at er a couple of days later for ds3, another $100+).... well, do to crying for money....doc said....Publix(grocery in south, more expensive than Kroger) gives abx for FREE!!!! i made sure to clarify several times....not aug or azith...but amox, pen and about 5 others....i went in and sure enough...free.. they figure you will spend $$ while you are waiting on abx....i'd rather spend a couple extra pennies on food i need, then another co-pay for another abx....(tastes bad though....pay the $2 flavor or put in tsp of chocolate syrup)... doc also said walmart offers the same abx's for $2 an rx

Well done and thanks to whom ever put it together!!!!

i wonder if he's seeing more cases where 1 isn't enough...but for some reason is leary to do mulitple hd ivigs...so kinda came up with a mid-level concept

ABSOLUTELY! Ditto

Thanks for responding. Ds would also have complete remission in the past with a 10 day cours of abx...oh those were the days...(As no one believed in pandas, just that he happened to have strep and the tics {only present while haveing strep} were a coincidence) Please give your dd probiotics...they are good for you anyway... my ds has issues from the MANY rounds of abx ..

very interesting..i wonder if they can some how use it for arsenic poisoning... my ds had high arsenic in hair sample a year ago(upper upper limit of normal)...i need to recheck...

ds camk went to 160 during allergy season...no other infection noted with blood draw... he also expressed full syd chorea...i don't know it was the allergens or allergens causing brain inflamation..... doc b started us on allergy shots ...ds allergies are pretty severe....doc b started suuuuper low i am out on if they are helping or not...trying to get a pattern down ...they may be desentizing him some...but we were given an extra 2 month dose in front of standard starting point dose...ie we are just reaching a normal child's 1st allergy shot dose

Sooooo Happy for your dd and your family!!! Thank you for posting how she summed up your visit on your dd particularly and the little tid bit above.. i just bawled my eyes out for 15 minutes....happiness and anger out of the 7 years i've been fighting this off and on.... Not to be semantical...do you think that statement was meant to include tics...you may not know...just asking as mom of a ticcer

Same to you Cindy!!!

Steph...this sounds like something we talked about a little while ago...but i was on that side... i need to go through in box..been soooo busy... call me... If cant...in short term....i think this is normal for us pit/pan parents at some point...or at many points..... Sorry the kids are dealing with kleb now....let the merry go round continue....NOT

we have not done any big guns.. if you can inform what dose and what time frame of ivig's maybe others can help with thoughts... did you start aug first....about a year ago??. and how long since the last ivig? all i can currently suggest is trying a different abx....or a combo of...if the trigger was myco p...like my sons last one..i have heard it may, like lymes take up to 2 years to completely clear... have you ruled out lymes? also what about a steroid taper...from what i read bursts can cause havoc on the immune system.. the burst was ok..only lasted a couple days and for my ds the taper was like a miracle.....didn't hold completely as we went into school year..but beautiful..and it had SOME lasting effect...for some it holds completely.

That is fantastic... Thank you for sharing!!!! It helps all of us...and really the parents to know such healing is attainable as children grow up!!!! Thank YOU!!!!!