Fixit

Thanks RN..that does help..and i understand just writing it to get it out of your head... i am too busy now..but would like pump you for info on My Lyme id thanks

On that note...gut... over the last year i agree and get it more and more.... and it makes me wonder why ds did better on vanco the 2-3 times he was on it but would relapse and the same with clyndamicyn... then we did the internal parasite thing(which would be the gut)(besides other things we are doing..ie hd vit c and at about 100bill probis) ds is doing well!!!

you could be right... maybe...as there are sooooo many other bacteria,parasites,virus,germs,invaders, we don't know about...it's just one of those that respond to lymes...long term mcyo p...protocal..... i wish the docs knew/know...but they are ALL learning with us..and when a doc says "NO, No way"..science stops and we are in a world of hurt.... SF...i did save my younger boys cord blood....is there something we can do with that!?!?!?!?! i would have saved the oldest one's but did not know about these cord banks at the time....

Great!!!...thanks for posting..so exciting after 4 days!

RN thanks for the post... 1 if you cold post more about this..i would greatly appreciate it or pm me 2 I KNOW 3 I am tired too and every doc i talk to has a slightly different answer then the next and that includes the lyme docs...i am already spent from pandas research...now i have to be lyme litterate...and i am old too ..a logical thinker..enjoy sudoku ..i just want someone to GIVE ME THE ANSWERS..and not search them out on my own after weighing 8 different responses i think lymes is going to get alot more advocates as our panda kids get these multiple infections...maybe this was meant to be to get lymes more reseach...idk

Yes..did the dot blot... i think..just like pandas...lyme docs have different views and interpretations of results to these tests... as with the cunninghame...imo...we just don't REALLY know what the resutls mean..and i hope the docs don't get too wrapped around the printed text...but use it as a possible guide.... i have spoken with a few different docs (current panda docs and a lymes doc)about my son results...still waiting to visit a lymes doc... all the answers i received are possible as..no one knows... so i have it is showing lyme in the past!??!?!...ok so why is it in his urine currently(this is from lyme doc)...and he could be right.. it is something else that looks and acts like lymes...ok...i buy that too...so if the lymes protocal works...lets just call it SOT for now...and start doing something....(this respnse was from a pandas expert and a lymes doc) maybe lymes will have a new diagnositc cryteria, in cluding TS and OCD....i think they should.... and i truly believe ds did and maybe still does have parasites... because..as i learn more...maybe healing should be in X time...if not move on to next possible invader.... maybe beth maloney...(pleas don't through tomatoes..and this is only part what i believe as it changes regularly)...maybe you only do need abx, if you can figure out what the problem is.....and maybe the rarer cases need ivig and pex....not saying i believe what i just typed... ds is still doing well since he did the internal parasite formula...he is not on abx.... part of me wants to see if his body can learn to heal the rest of the way on his own..because i think that is how he will get the longest and best results... of course i might change my mind tomorrow. i am still gathering info on ds results and how to intrepet them for him PS...i did start ds on hd vitamin C about a month before parastie thing...i may have had some herxing with that to start..including congestin and ramping...but that is when my new panda ds8 came home with strep... so when we started with parstie thing..it never got worse...only better

Worried dad....thank you,,it is brave to tell someone something that doesn't effect you now..but was a burden and imbarressment at one point for you........ I am glad you are here to represent!!!

Good find ....thank you... Phasmid..i know you understand stuff alot better than i... but...per several sites and dr garth?.....myco may need to be treated for years and rotating abx just like lymes... i don't totally get it..i don't understand alot of things....but the more i do understand...once these kids go autoimmune...i would believe that a stand course of abx is not enough and may need to be continuous over a longer period of time....

going to flip it the other way...just my experiences and thoughts...not a doctor, just laying it out there..and JMHO. dh has pandas... so passed via either parent.. dh still chronic strep...aso and antidnas still high... his older brother had scarlet fever, and a mild ocd incident he remembers..horrible allergies this is the one with the son i recently mentioned..with mild, mild, tics all his life..they never did anything for them or went to a doc for them(ie under reported)..recently came down with some stomach/digestion condition they started to treat around sept...when i saw him for a full week at thanksgiveing...NO TICS! dh younger brother had impetgo so many times their mom cant remember...he has auto immune rheumtoid arthitis and psorsisi so bad he is on ramicade and still has it pretty bad but its with tics...i BELIEVE tics are underdiagnosed, under reported, under follow through as root cause..as some may not seen it as interfereing as may that compared with ocd... but at start of this almost 8 years now..ds eye blink sent me in a tizzy..as i quickly correleted it each and every time with a strep infection...and remittance w/i weeks of starting abx... when we went to 1st neuro..as i wanted to prove ds had something..something with strep... dh was diaganosed with chronic tic.>>>some other nuero would have called it ts... and ds with TRANSIENT TIC.....REALLY!!!!!..this was when he was 5..and his blink turned to shoulder shrug...(that was his new "TRANSIENT TIC" ) that would only oddly appear with the presence of strep!!!!! (over the next 4 years) i also think boy usuually present with tics more often this onset at age 9..took to 2 more nueros...diagnosed with TS (BULL Sh*^&*%$$^!) NO such thing...I HAVE TO SAY IT.....if it takes years...they just havent found the cause yet or figured how to treat it with the right protocal!... sorry if I offend anyone..JMHO other than physical trauma, reaction to a drug/prescription ...it then is some autoimmune, infection...correlation... SORRY...i am tired of docs sending us down the wrong ave...or even suggestin things that send us down the wrong path ...like its from the moms side...(i know he means well, but really?).....now.. maybe..lets say i have lymes..(don't know, havent' checked, is it possible, sure)..and if that is the case...then my sons inherited response (from his father) is pandas/ts like, to that, allergies and strep and infections.....I realize there are quite a few who don't agree with me..but that is ok..it makes th..e world go round...we'll know in about 50-100 years if i was right!

my apt for tomorrow is rescheduled for friday do to 6 inches of snow here in GA...he is doc b out of ashville nc.. has anyone used or heard of him.. i got him from LymeDiseaseAssociation.org he is an integrative doc 3 hr drive i have an apt next week with a doc b in md.. i think some here see him... however..i will have to fly ...dh is out of town all next week...and i have 3 kids ...i will at least have to resched...but going forward....it will be difficult to maintain appts.....i guess if i plan better..i can do it... a road trip i could only attempt 2x a year at best..other wise..i have to fly has anyone seen a Doc b out of hendersonville TN...he might be more well known.....i have links to all 3... 4 hr drive i just want to be effecient and effective...

I am so sorry you are going through this... i am new to the lymes thing... But i would do the tests now..and maybe do dot blot..unles your doc says that interferes with test...JMHO... on the dot blot ..its a urine sample...and...my doc would NOT challenge it...i took it upon myself to find herbs that are recommended...some are listed when the kit comes in.....that alone with 250mg zith gave me 2 positives on the test.... Also order them NOW..it's either igenex or the other staff...but things seem to get delayed for a lot of reasons...

could be allergic reaction to something??? contact dermatise could be in constant herx...trying to sluff stuff off??? ie happened to freind when they went off milk or was it gluten

Kathy..i feel your pain.. my ds used to, on a standard 10d course of abx..get relief in 24 hrs...then more than 50% in 2 weeks and the rest gone by end of month.........i was ssssspppppooooooiiiiiillllleeeeeeddddd!!!!!!! 4/6/09 will be 2 years... we have tried different protocals...not on anything too long..and that may have been the problem.... in some of his recovery..its like long rising waves..nothing dramatic...until i go huh..he's not doing this anymore..or oh...that big annoying one is gone..for a lesser softer version... and you feel like your crazy...in ....is it really different...was the other one more consistant...then the old one peeks in for an hour, or an evening, so you think i must have just missed all the other times he was doing it, but 2 weeks from that you realize it is really gone.... we have not done ivig or pex...we are still in line for pex but i have not update our doc with the new lyme results... and at this point..ds, its seems....well....i don't even want to say....you know what i mean!!!! but keep me in your prayers too..as you may know..i thought ds8 was non-p and started a tic 2-3 days before christmas...what a sh(*&&y present...and ds3 had 2 mild tics in aug-sept of 2010.... I HAVE A FRIGGEN LONG ROAD AHEAD OF ME...PRAY I DON' HAVE A HEART ATTACK BEFORE THEY REACH ADULTHOOOD we have apt with lyme doc on tuesday assuming the roads are clear!! 3-4 hours away..i really want to get it started....

I like that statement! maybe flip neuro/physc to physc/neuro and make the p silent and our new acrynm is pnarci( or just let neurologiacl cover it all..NARCI) ps...interesting about the ivig theory..i heard that before...can anyone else comment or witness something similar... ie those w/o ivig healing/responding quicker

mel...is that an update?? even if it came in through the back door...i'm very glad

thanks buster..looks good... excuse my ignorance..but pandas and sc cant overlap..??

well...biotin is just a b vitamin..and is dispensed in 1-3mg....maybe you could even start with a half... i'm guessing it would take a while.. it stops the yeast from converting to its fungal form..if i worded that right http://www.nativeremedies.com/articles/the-roll-of-biotin-in-the-treatment-of-candida.html

fr88, thanks for posting all of this most valuable info... of course i have a question...and probably more later... do you feel that you are better than when you were younger.. did it only come back..lets say 15%... can i ask what are your current symptoms?? do you think others pick up on it, or is it something you can mask??

i still find yeast difficult to catch and put it together...and go oh yah...yeast there could be some yeast in the mouth..and more so if there is thrush.... for ds he had a screech that would come in...and sometimes he would just be all over the place..self stimulating.. moving constantly, tossing small baby chairs in air, catching it with his feet..tacklining his brothers... so if this sound like in the same avenue i think it could be,but not as exaggerated, and maybe it wouldn't be for her as she is a girl, they are usually more calm..and would probably follow suite in case too.. yah..i would say he seemed figity even sitting down, getting up , adjusting, twisting.. it gets hard to recall, when you are in a new place, and have new panda kids..and remembering what is not crucial at the moment... you can do the morining spit test...i haven't done it in a while..... i wonder if i ever checked when he wasn't in episode.... i would almost think if your dd is on abx..that the spit test would show some irregularity itchy behinds and vaginal yeast infections are another clue also regular nsaids create a better yeast enviroment(as in let it grow in a not good way) i can't say that ole helped my ds as an anti bacterial..fungal.. there are some who respond to it i've been using biotin for some time...to help keep canida at bay... plus there are other things it does that our family needs not saying its the only thing that is helping us if you want to check with your doc about the internal parasite formula i posted....it says it treats candida too..... so i don't know if it got some parasites..or finally got his flora back in order...but ds is doing pretty well...

did you ever do a dot blot??? is this true of the dot blot too????..or is dot blot a MOre Specific test...been trying to search it..but i can't find anything comparing different tests..what they measure better etc...mind you its saturday and all the kids are home!!!

i don't think you should go..or edit, unless you had a little differnt twist to it... it is good to air it out!!! That is how a family stays strong!!

JMHO..feeling a little left out.... i think the panda/tic circle need to be more overlapped and not nessaricly with other items..maybe sc......as i sit here and ds is playing a computer game...face pucker.tics that started just before christmas(thought he was non-panda).....does great in school has friends...just confirmed with mono on monday(strep pos 4 weeks prior) ds 3 coming out from exposure, only blinking when i'm mad at him..... ds10..my original panda..tics wwaayyy down after parasite cleanse....rocking out the school grades(reading just came up 2 grade levels after parasite cleanse..but even at that he was still manageing Bs and above with no help from me at all as i am too busy) i don't think people are pursueing pandas with just tics..they are sent down differnt path by docs...and may not be as annyoing by parents to pursue otherwise..... ie..my nephew..had mild eye blinks all of early childhood(they thought/think i a crazy and so what)changed to a couple of other minor tics..had a mild head nod the last couple of years..came down with stomach bug/enzyme/condition in septermberish..and other digestion problems...treating that and tics were gone when i saw him for a weekk over thanksgiving break!!!!!!! but i am crazy (he's 13 and mind you the tics where mild)(oh ,,great, smart kid) sorry for the ramble Buster

fr88...this is just a thought... and i get not wanting to spend any more money... but what if it was positive..and you were able to find something, maybe in 20 years they will tag more bacteria and parasites...if it is not "lymes" exactly...but the fact that the abx they use for lymes is different...and the way they pair them is different...there might be some results.... i have no doubt that ds has parasties, because he is an indiscriminate chewer..shirst,pens..something shiney off the ground, found in the park, etc..all his life... with that said...since my doc would not challenge the dot blot with abx other than zith..and i want to get value out of every dollar...i went to the herb store and picked up those parasite pills i mentioned and did it on my own..... DS is doing soooo much better since doing..i guess it would be a parasite cleanse...(12/1-12/21) not only are his tics way down..he's just a little more responsive and engaged(but i always thougth he had a good personallity).. AND...all his years at school..he has had a problem with reading...even his last standard test in late oct..early nov..tested him at early 4th grade level...he is in the 5th grade... he handed me the new assesment taken 1/5/11.....he scored mid 6th grade...(and i don't see him reading much more, if any more) i have not worked with him on this...i am too busy..it was the least of my problems... i have to add though..that we are doing hd vit c, like 9000mg-started about a month before..thought we had herxing with that...but ds8 came home with strep(too many variables) i hope he holds...mama needs something to give, as his 2 brothers are showing something!!

Ok...thank you...now i get the actualy LYmes thing (though he obviously had something) with all that you listed..especially the sperm..dh said he can't remember how many ticks he has tweezed and burned off... and i now remember something about as you get further in to treatment that the numbers then go up

yes i heard something simailar...and readi it somewhere.... i also think..it was either..norcal,nevergiveup or momof2pandas that had some info on using tylenyol