Fixit

hi dcpom... who did you do pex with???? you never did ivig to follow up???

who are you doing plasmaphereis with...doc k is it getting covered by insurance.... i feel like that might be a better 1, 2 process....pheresis then ivig...but i could be wrong

Hi alex .....are you seeing doc k or doc b....i thought doc b did the last ivig....couldn't you have called him.... or was doc b still on a curve and looking for doc k's lead.... you're not on monthly ivig's and how old is your boy??

could this be what just happened to ds.....??????? by the end of vanco ds screeches/vocals were completely gone!!!!!! i had 2 days left of amox and i was to roll into nystatin as soon as the vanco was done....by the next day the vocals were back....and last night and today they are the worst ever!!!! he has the sneeze like lauren and the screech and a k,k,k, and a ch, ch, ch with every breath..........i can bearly write this...i can't stand it!!!!!! the teacher emailed this morning and she is concerned.....is this all die off????

http://www.advanced-allergy.com/

Hi, my daughter had band 41 on standard Western Blot on 2 different tests but was considered negative for Lyme according to CDC guidelines. We were not seeing improvement in her symptoms on Augmentin so we consulted with a LLMD. My Lyme doctor felt in isolation, band 41 is not of huge concern if all other bands have been properly tested and that coinfections have been ruled out. In our case, that was not done until we saw him. He has years of pediatic lyme care experience and feels that the co infection Bartonella can be the cause of neuropsychiatric symptoms. The diagnosis of Lyme is a clinical one and treatment is chosen based on the individual need and response. So, I am not sure if there is a "best" antibiotic. We were told treatment will be for at least 4 months and should continue for 2 months beyond symptom resolution to ensure the bacteria has been treated beyond it's life cycle. Our daughter has been on zythromax, bactrim, and tindamax for 3 months with good results. I was told that her program addresses active Lyme, Bartonella, and any bacteria that has developed a biofilm or changed into a dormant cyst form. The goal is to treat long enought to get to all the bacteria and minimize the risk of relapse once treatment is completed. Hope this info helps. Joanne So are you actually going after band 41......Scott doesn't seem to think it is of concern either...but maybe it is a marker for some other bacteria,,,i guess as dr T indicated???? is the zith, bactrim and tindamax for lymes? is it just for some other infectiona that 41 might be indicating? how long before you started to see results??/ 1 month...just now??? i'm asking as my head is getting cloudy and i really cant' anything straight anymore......is it maybe just and inflammation marker... .it that what TLR5 marks or is tlr5 a marker for a food bacteria... ds also has dybosis, from what i can gather,,,all his bacteriaa, funguses and yeasts seem off??? are my questions making sense??/ or

my ds has band 41 also on igenex...so i too am curious???

i would say i do not have allergies...but there are a couple of days early in the season and a couple of days late in the season where i feel a tightness, or irritation right where you would do a trake......so if i don't have allergies, per common knnowledge, this could still be effecting your son.... also...when you mow, you are kicking up other pollens and molds that grow naturally in the ground.... and if you log into this site ....everyday it gives lttle tid bits of info...ie...if you have allergies...donn't go out for 3-4 HOURS after the lawn has been mowed because it stays in the air http://weather.weatherbug.com/GA/Atlanta-w...llen-count.html this one you can get your daily pollen counts http://www.atlantaallergy.com/

knowing just a little of fuelforall is dealing with.... how were you able to pull that out the information?? you may be right, i don't know.....but how did you get there???? and even if you explain it, i still may not get it

that is the problem....the goal is to get the bb to close and keep away allergens, which is virtually impossbile unless you only have food allergies... i think the problem becomes autoimmune, where even if the infection is cleared...the body is in such a fight mode, it is still fighting itself and remaining inflammed on its own accord...you've somehow got to get the body to slow down.....

i am am anxiously waiting to call scott in the morning.... well just started using probiotics ...but not nearly stong enough espcecially with ds abx history.... started with culturelle.... .did maybe 8-10 billion on natren scott ordered VSL #3 its supposed to be persription but cvs says its over the counter...scott said take 1/2 packet packet = 400 blilion just started that yesterday.....i'm pretty sure it was after the 1st screel/ch well it wasn't coverd by insureance and was $93 stephanie sent my linq for the one she uses ....maybe i should swithch to that......is VSL "artificial" as in cloned or somthing??? on the great plains test its says that high values are most often due to dysbiosis. bacterial overgrowth can be treated with natural anit-bacterial agents and/or 30-50 billion cfus of probiotics that include Lactobacillus rhamnosus. scale 10-400 DS=825 his citramalic and arabinose which are yeast were high and so was his 3-oxoglutaric which is a fungus Do you think its a coincidence???? it seems...just like before ...that its not so much, or at all, when he's sitting, though it dose happen......its when he stands up or is walking about......like the gassess get moving

30 days ago ds started amox 875 2x daily..plus fluconzole 100mg 1 time as per doc t thought and now working with Ssmith...since sons pain with amox came late in dosage they thought not a reaction to meds but amox killing everything in path and fungus over growting and causing pain.... well that part seems correct and no pain...today is last day of amox....but no real benefit either... so as we were proceding we found out ds hippicuric acid was very high...and smith thought that may be correlation with of screeches... screached started 3 days into biaxin...biaxin causing rise of hippicurric acid in combo of ds being on anitbiotc several times a year with no additional probitoics.... no one ever told me and i feel like a *((&&^ *^%&**.... so ds has been screeching ever since..2/28/10 we start vancomycin to kill off other bacteria over growth, i guess that raises hippcuric acid...... i didn't' notice anything until about a week,then there is a drop off...pretty good one... schreeches here and there....maybe after being out side or late at night...but, pollens have also dropped form being in the thousands to below 100 duing this time....so i think it could be a couple of things... just like 5 screechs on 5/18 and maybe 5 on 5/19/10 on thursay 5/20/10 the last day of vanco we have NO screeches. pollen 42......yesterday 5/21/10 no screeches on 5/21/10 i was told to start nystatin..you cant stay on vanco long... nystatiin dose similar stuff as vanco but not as good.. i asked smith if i should stop amox..i only have a couple of days left anyway..i don't thinkg its doing anything and he said just finish it... (but the thought is that abx's are what brougth this about) .... today5/22/10 2 days w/o vanco......2 days of amox with just nystatin.....THE screeches are back!!!!!!!...not as bad as his worst days...but alot and there is a k and a ch....and i noticed when he puts them together quick, it could almost sound like a sneeze .......when he's watchng tv nothing....it when he's up and about walking around and other stuff Do you think its a coincidence???? Do you think it's pollen...he wasn't outside..it rained last night into today, pollen level down but there is still pollen....i have to think it's the vanco i'm scared we screwed things up by continueing amox past our dose of vanco......what should i do..???

and dosasge....80lbs

what is the ratio you are using for fish oil... what time of day are you taking it..... brand if you don't mind....

1 i find others are not as hyper focused on tics as we are...so your boy may be doing it at school and no one's thinkg twice. 2 i thinkg the clearing can last while after being sick or seeming of allergies clearing as the season winds down......as a healthy adult myself ..even though the common cold in numbers is 7-10 days...the few times i get sick, the lingering effect of feeling run down last for a month or better, ther may be something still bothering him 3 being a pandas mom...get everything checked

I said my prayers just for your boy..... looking forward to his healing!!!!!!

Absolutely........ and don't feel like a bad mom.....it's the docs who poo poo the parents

if you've checked out things that might effecting you, like allergies and all that, and b12 levels...blah, blah.. you may want to peek over at the pandas board and see if there are any other underlying issues....maybe even go see a DAN Doctor......they are pretty thorough on seeing if you have any gut issues just a thought.....

God Bless you Too!! There is alot to gleen from the board!!!

Hi abbe... is your son still using topomax or tenex???? how long did or have you been ugin it???? can you tell me when you added that ...prior or post dr chung...... i've got alot going on......but if i make road trip to nj....might visit chung...... would it be worth it for only a visit or 2 crammed into a week or so???? thanks

can i ask why your doc thinks ivig is your last resor??? what tests did you have done and what were the results???? just because somthing worked or didnt' work for someone else doens't mean that is the case for you...... i'm not trying to be a party pooper......i definiley thinkg ivig is worth pursuing....but what happened?/// did you get any numbers.....or lack of and basicly your kids system is just in overdrive and needs to be stopped??????

i could copy and paste what you are saying and email it to a dozen people...... I've had all those experiences..... i too just shut down.... i do that naturally becuase i just want to think....and the less said the better..i find and when kim said Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes. that is all i focus on..... but i don't care, this is war!!!!....I just want my kids healthy!!!!!

do you know how doc t treated them.....did they get better?

yes...i wish i knew that or thought of that or had a doc who didn' think i was crazy... just eye blink ages3-5......5 almost 6 with bad strep we couln't rid it turned to a neck roll...age9....all ###### has broken loose...and we are still trying to find our path to recovery.....(have not yet done ivig...doing more tests and treating underliyng conditions and hopefully always moving forward) we would have 3-5 months between episodes with complete remission...........(only reason i got abx last severla times is ds present with illness even though qucik tests came back neg....doc only gave abx based on strep history and presentation of illness.....again maybe it was another bacteria or myco p the last couple of times)... who would have given me long term abx???????

http://www.cnn.com/2010/HEALTH/05/17/pesti...x.html?hpt=Sbin