Fixit

thanks for all the replies... makes me wish i didn't have to resched apt from next week to farther out...mannnnnn!!!! yes i meant to type ldn.... nac feeds yeast..which is one of the reasons i have him down to 250mg as an example..i don't know if anyone is interested in this thread from lymebusters regarding NAC and yeast http://lymebusters.proboards.com/index.cgi?board=rash&action=display&thread=13762&page=3 vit c also helps maintian glutithione....so maybe since ds is on hd i can just eliminate the rest anyway...maybe.. the meletonin thing was very interesting....will look more into that later yes..there is a concern about FDA getting involved with the vitamins....they have done such a great job with cigaerettes over the last 50 years... Suzan thanks for the list...if you want to discuss some of them..lets talk...a couple good finds if even 1/2 way as good as the infamous doc b(llmd) who knows...maybe this doc will have some amazing new info or protocal or idea to try ... went back to my herbal store....Gosh i am lucky to have them close...they know so much.... in meantime i will continue to work on ds bowels and gut...no pain or anything..but not in harmony....as who's is with all the chlorine in our water and blah, blah, blah... and will probably redo the parasite formula thingy......

Well it was ok..... He is integrative..and does treat some lyme patients with Marshal protocall...i just know a smidge about it... He was ehhh I think he would be a good starting point for someone in the area who is just starting the panda/pit/lyme research/avenues... i believe they do vitc iv...glutithione..etc there.. his starting questions felt like, what you see on tv from an pyschologist visit... what are you here for.. what do you want from us.. how do you think we can help... IDK...that's why i'm here.... anyway..his assistant knows all my DANS.not just aquaintances..she was awesome..loved her..i will be researching her/she worked at princeton univ..in neuro something...husband is a nuero something...(sorry trying to type and 3 kids at home for x weeks ...and the fighting OMG)... i just think i am way advanced(which is a scary thought) for what they can offer at this point...so i will probalby just stick with my other docs..which i wasn't planning on changing...but he doesn't know if it's lymes??? which is why i went i respect that....but i feel like it was a wasted visit....he did order a couple more tests??? cd57 included.... but with my sons history...curled toe nails..bruxism..vocal explosion with original steroid burst...wonderful response to taper..extremely positive reponse to parasite formula...2 pretty indicative igenex tests and etc on list of things . i am starting to get more convinced it is lymes..or lyme mimic...no matter cd57 results... and would like to target it as such.... steph ...i know you were waiting on this...i think you are way way beyond this...but again the assistant..she KNOWS all your guys persoanlly...so i will investigate with the dans if they have more thoughts on him i did learn that the FDA..besides limiting acetomehophyn(tylenol)in abx...they are going to limit the amount of vit c you can get in an IV....it makes me so mad...i never used iv c.(i am using hd at home)..but they are sure helping the pharmaseticals stay in business... he does have pandas patients...though i dont know what he does for it...as he seemed not to thrilled with long term abx...and that is not what i was there for.... mind you ...he usually doesn't work on fridays and is making up time...maybe he was not on his game and having a bad day... we will see what happens with follow up...there are always somethings to take away he knows and likes lnd...was curious why i discontinued spironolatone....i told him my concerns with boys and hormones, long term..he said i had a good point... told he we were off meletonin as things were so good... he said meletonin is a natural anti-inflam..at .5 g it is the natural amount found in body..should not have concerns about not acutally needing it and that dosage level disregulating anything..... concerns about NAC going forward even at 250mg and yeast being an issue for ds... and i agree somewhat with someones post..for our kids they probably need abx (not herbals)at least to start..as we are talking about very sick kids with alot of underlying coinfections that have probably been there a very long time...but i have seen some very good things with herbals so lastly...can i ask the board for another referral in the Atlanta/alpharetta GA area... i am seeing the B in MD in 2 weeks...i just wonder if i should see another doc.. or do i just follow what the doc i saw may come back with...or just see what the MD visit brings.... as i don't suspect i will follow through too long with this particular doc but it would be nice to have a doc at a drivable visit....i think 8 hrs round trip is the best i can do for a day trip

edit yes...thank you! edit...i'm having have a senior moment.....i read that last night, i was a little tired....but just noticed the reddest flag part.... do we know any other bacteria...(as in the case of 41) can cause this to show up... Oh..and what was the internal bug you get from lakes...gardia...can that look like band 41?? or other flagilyn type things

does anyone know??? or have idea...on band 39 when they say specific...does that mean there is no cross reactivity...it would only glow if it were lymes and no other illness??

if you are interested in that internal parastie formual ds did i will pm...also treats candida...soo pleased with it

wow ..thanks so much.....i will try to report tomorrow, on my NC llmd visit..he runs caustious...have apt with doc b in md 2/2/11..will be ready with this new info...

this is just a discussion and in some ways i agree with some things ..and you guys know how i feel about"ts"(not)....it just doesnt' catch the parents eye till then..till it goes hyperbolic....or...it might really be their first onset..as with ds8...though trying to think back...i do remember an eye blink for 2 weeks that again i was told was a transient tic...he may have had strep then?...but he has not had strep again till 5years later, 6 weeks prior to this onset..(second illness..i believe it's related to his pos mono test a couple weeks ago double slammed him..he was not ticcing with the strep and thought he remained non-panda) anywho, like i said..ds10 1/2..has had pandas since he was 3...the first 2 times...he was sick, w/i 2 weeks the tics came ..then abx then remission...by the 3rd time ..the tics started coming prior to realizing he was even sick...still ran around like a madman....test pos to strep..do abx...remission...ages 3,4,5,6,7,8(diaganosed with transient tic by docs and neuro..as they rolled their eyes at me and pandas) this onset ...at 9years..is hyperbolic...has not gone into remission(completely)but so close with steroids a couple times and doing equally well now(knock, knock,double, double, jinx, jinx)....the same years "ts" has usaual onset... and we over the last 2 years are really just starting to realize how intricate, complex and the many possible variables that really exist in getting these kids well..(not just strep anymore!!!!)immune complexes, gut issues etc oh..ps...they don't run a single lab, mri, ekg, stool sample, unrine test, vitamin defcenty, aso, myco p. mono, celiac etc. test...nothing to diagnose TS....nothing, none..not interested

VERY much so!!! Thank you !

Mati's...since everyone seems to be on the same cart on the roller coaster... did all of you start treatment at the same time?? is this part of the life cycle?? do you think something else has entered the home???

Steph!!!!! I am so sorry!!! Call the docs like suggested.... I will be on road tomorrow to llmd....i'll have alot of time!!!

even though my last non-panda went panda at age 8... strep(he hadn't had strep in at least 5 years, if at all, even with all the strep that has run through our house) , 5weeks later another illness..and then 5-7 days later..the hammer fell i think the age where it goes hyperbolic is 9,10,11,12...those would be the puberty ages... the ds i mostly write about..had pandas since 3...but this unrelenting onset of almost 2 years was about a month after turning 9... so back to ds8...i am hoping to still clear him...and put him in a bubble once i do so....

SF...sorry i don't remember...and i'm pretty sure you said you are treating all of you kids for lymes..or does this child have something else? and how long have you been treating your younger son? did you change or add anything recently? is it possible he caught something, ie other illness? or do you think it is herxing? or is the wound to fresh to even think about?

this isn't much help...but can you get some protein in her...straigh protein...chicken leg...turkey lunch meat...peanut butter... espciall turkey will have triptophen and will calm... aslo any hunger makes me cranky(er)

Cool!!!

maybe not all tics...but more the ones that are compulsive in nature

i am sorry...i know how you feel....my "non-pandas"kid, went panda on me 2 days befoe christmas...... again..so sorry

Oh I didn't know he saw patients. I think he really knows his stuff and he came highly recommended (his book and protocol anyway). Sounds like an interesting appt, you'd probably learn a lot. What else are you doing as far as treatment (I'm sorry I can't remember tonight). Susan now you are making me wonder if i have the right guy....he looks like keanu reeves(sp)?

thanks..will try tomorrow..or on raod trip to nc doc...i'll have some time then... kids are out till tuesday now>>>>>>

real quick...maybe she is herxing..someone else might be to answer that... we are doing hd vit c..i will say that if can get a form of absorbic in a capusle...that seems to give less digetion problems for me than the straight powder form...you would think it would be the same once the capsule dissentigrates(sp)..but it isn't... i am ready for bed but i can pm some stuff i have somewhere on vit c..tomorrow

i almost made an appointment to see the author..he's a DO and is in TN... any thoughts on that or recommendations

oh yah..and quercitin too

Has anyone used Dr Biddle in Ashville NC he is ilads member but not sure what that means..got from Lymesdiseaseassociation.org he is also integrative..when i call the staff does know and they do treat pandas..i will pump when i get there.... going friday..i am ready to talk to anyone who might have an idea of what is going on... Unless there is someone who's had a bad experience with this doc..i gonna post his site..i feel like i've seen him before http://www.docbiddle.com/index.htm . had to move my appt with doc beal out of md, next week 1/26 to 2/2...just can't do it logistically with dh out of town can anyone chime in on if they see either of these docs and would they recommend..... i will now attempt 10 minutes at purging pm box....kids still home from school...bear with me..... thanks all

i wonder same thing... ds had cluster of warts on knee...gross.... 1-2 left..or they may be gone..i haven't looked in couple of days.. also using hd vit c ds doing better than when they were all there...but many other variable are always in play... but i would suggest getting rid of them as they are a virus

ds is about 80lb and almost 11.. started at 500 down to 250....he also takes between 9-6000mg of vit c and started selenium at 200 downed that to 100mg they all work in concert...well i guess everything does doing great here..started it because of random episodes of trich..hair is all in... will definitely keep him on this dose at least through allergy season... contiplate changes in may

your saying to treat parasites AVOID onions garlic i would think it was the opposite..espcially garlic