Fixit

i agree

Thank you for asking this question.... As i read more and more.....and more people test pos for lymes....i just don't get it either!?!?!(of course we are talking about sick children..so i guess there is more of a likelyhood of these children having something than a "healthy"child) I have alot to learn....and that is why i asked..if my results are really lyme...i just wonder if maybe its "not lymes"...but some other parasite, bacteria..what ever the test is picking up//// But if the protocal works and gets rid of what ever this is...that is really what is important to me...We can call this SOT too...though it would be nice to know what i am going after..... i have a couple questions... did the cdc take out...or leave in band 39??? that is the one that came up ind igm in april 2010..(41+ on igm and igg) i think we tested with a regular lab just before this and was neg..... does this mean it was a new infection and why only igm registered?? or the infection was just starting to build up????? yes i have taken tics off of ds(years ago)...but not imbedded..... though i think...cant swear that ds had cellusis??? here is pic that may have triggered a memory for me...again..i think...this was 5 years or so ago when we lived in pa..and i believe it was my sons ear?!?!...i think http://www.righthealth.com/topic/Pictures_Of_Cellulitis?p=l&as=goog&ac=519&kgl=5900644 can ds have been bitten that long ago and just show antibodies now??? to me the orignal results with only 1+ on 41 and an ind on 39 means mild.... we did have dogs...?? is it possible we all have it..passed through sharing of cups???. can it be passed via sperm???? if i have it??? could i have passed it to all of my children??? and i guess their respones to it tic based....mine..miquito magnet?? Oh...can it be passed from misquistos? I will be posting more annoying questions i'm sure..i'm trying to read as much as i can..but maybe some hear/or know stuff i haven't gotten to as my questions accumulate..

Yes..very well explained.... And even though i've been at this almost 2 years.....i still need reassurance about the sawtooth thing(to feel like you are on the right path...not wasting days or weeks with something)....is sawtooth real?..how many days apart...can it be within a single day........unfortuanatley...there is no "normal", "regular" to any of this....

i think that more would be tic onset for pandas...as when tics start...they are told its transient tics..if it progresses..they are then told it is TS by their doctor....and people are like sheep... with ocd..i think waking up with sudden behavioral change, send more people(ie people here on the board)..to ask..how can this happen overnight??? i would think the SC shape should be more egg like..let it stick out a little and overlap with pandas, tics..as at one pt ds had trunk twisting

#1 bold item...same here, i get it... #2 bold itme....I LOVE YOU!!!

That was great reply!!!...i like getting the details...i can than disect it.... it gives examples.. sets some expected reactions and recoveries.. 85% is great!!!!! i feel like that may be where we are now..post internal parasite formuala he did.... i just don't know if i am emotioanlly ready for a retreat...with herxing ....as i sit here with my ds8 ticcing,home from school with mono......and wondering if the 3 year old is reacting to all the illness around him..... THank you for the reply!!... I have to ask ....and if anyone else could reply.... Can we get these kids to 100%???... It seems from the posts, that the parents here arent' expecting what ever progress they made to hold?? is that true..or am i reading into it???..... Are lyme doctors farther ahead in their understanding and protocals than panda docs.... at this point i just want a plan i can follow...AND LET GO!!!!

just wanted to add.... that these things supposed cycle....so if you catch 1 day that is good and considered positive... the first llmd is spoke with said you could test 10 times and all be neg... you have to catch it in cycle.... or like my one thought...once i got them kicked up with herbs...but i also had upped the azith for a full 2 days before last test...if that killed it off???

i am new to the lymes thing....and HAVE SOOOOO MANY QUESTIONS.. i cant even keep my thoughts straight... i think my little brain is full... so i will likely keep asking the same questions over and over... are you saying that you are getting the most results from the lyme treatment??? are you saying that ivig was a waste of time??? or are you using it in conjunction with the lyme treatment?? when you said some things returned after a dental cleaning...did they eventually go away??? Do you have a percentage of how much better things are overall...50%..70%??? why do you think things will change again???when you change abx??? a new herx thing???? i am so overwhelmed...it took so long to feel like i had an idea of ins and outs of pandas....now this

Dawn..if you can refresh my memeory.... you child has lymes also???? what are the 3 bs are you dealing with 2 children.... since doing ivigss...has there been any long term improvemtnt...30%? you're doing ivig and abx to treat lymes??? i am just starting the lyme thing

thanks steph... i didn't know about the clostrida connection... 2 days ago his shirt was soaked....(4-5 days after restarting zith)...

Thanks all.. tpotter..you don't think i should cancel pex...i was going to call tomorrow... maybe i will think about it over the weekend.... wont doc l cancel it if i send the dot blot???..she didn't know i was doing it.. i just wanted to followup as band 39 was ind....none of my docs thought it so...i know my dan was kinda surprised... suzan,,thanks for the support as you are going through a rough time... momofgirls..well..when i did orignal western in 4/10...just 41+ and 39ind...all my panda docs said not lyme... and ds did great on the taper in july...and we've held some of the ground we made then, but not all... though i will say..orgianl burst in feb made him worse..though again we had 4 fantastic days a few weeks out..but rebounded back to h(*(*& the begining of the steroid... so...as i was preparing for a big gun..i was getting my ducks in a row...ta in sept..a little improvement but not complete hold...and with all the talk of lymes...i thought...let me just cross my T's....and asked for dot blot...with not much expection from me or my doc.... we just completed samples in early dec and i just got our results yesterday....i am just starting to digest this.... i lined the docs up just incase, and figured i could cancel..but id' go see at least one in person, no matter what the results read.....what the heck is another couple hundred?? i was thinking i should test me and dh first.... my only symtoms that stuck out from the list are...thyroid..i am a misquito buffet...and even though i have a great vocabulary, i cant use it because my brain cant find the words sometimes...

Phas...so glad it went well!!!! Please do keep us updated.....and this could well be your magic bullet, magic bullet, magic bullet!!!!

Suzan...i didn't know you were over here!!!! it sounds terrible!!1... i just want to cry..... i so hope you and your dd turn the corner soon!!! i was happy to find something else to attack...as ds has not gone into complete remsiion since onseet 1 3/4 years ago... and ds was in line for pex..........so i guess i will have to cancel.... but now...i just don't know if i can ride this wave..... i don't know if you know...my ds8 started to tic just before Christmas(i thought he my non-panda kid) and my ds 3 had some tics in aug on our road trip to the panda docs....went away after 2 rounds of abx for ear infection, that wouldn't go away 2010 was not a good year..i went from 1 panda to 3 i was holding so well....but in the last hour...i am scared...and feel a little hopeless

Thanks Wendy....so it is lymes...jeez..louise... I may need some hand holding through the herx...I'm pretty spent!!!

Thanks Michael.... today is day 6 back on....i might go off..as the weekend is coming up...he'll only go to school monday before a new plan... and zith can last a week in system ...so that should hold us till wednesday... also..incase you didn't cath it..my new panda ds8 tested pos..mono as of MOnday...so i have alot going on... based on the info posted...ie dot blot....is that lymes..or parasites..or both???.. my dan was shocked...as igenex was only 41+ both...and 39ind igm

maybe spoke a little too soon... he was fantastic over the 2 week christmas holidays... he asked for no meds for christmas...tapered off last of abx by then and just did supplements.... started azith 250 sat 1/1/11...to get some in for school... just now..he had a few more than lateely... reherxing ?? just letting more out after school...but i just asked if he felt like the tics were coming back some..he said yah...alittle... i just read somehing here...about not usind abx..till parasites are gone..... should i take him off zith till appointment on tuesday???

A little back up…. Ds was ramping early Nov..thought he had strep..no…next day ds8(my new panda)comes off bus crying about throat….get him abx..ds8 at that point was still fine till Dec…we will get to him on another post as I am some how holding it together..and I think I am compartmentalizing (sp) is how I am doing it, but need support as my new fears for him rise…But my original panda is healing?! So I put ds back on aztih as strep exposure…a little dismayed..as I was still waiting for dot blot to come in.. It arrives..he’s been on aztih 250 for 2 weeks…my dan did not want to challenge the test…I figure I am spending another 3-400…I want to do something…so I got to herbal store and pickup this product there….and am kinda excited as it says it treats candida, which I think is a problem for ds…and I thought once I get it to full strength ..4 days…I will up aztih to 500…which I did http://www.google.com/products/catalog?q=internal+parasite+formula+healthforce+nutritionals&hl=en&prmd=ivns&resnum=3&wrapid=tlif12926013052151&um=1&ie=UTF-8&cid=5682337059954173445&ei=24cLTb6zIYK78ga8l-C9Dg&sa=X&oi=product_catalog_result&ct=result&resnum=1&ved=0CEEQ8wIwAA# so …he takes firs pill and I start 1 arganon pill with this protoacal..just to cover my bases.. 2nd day I do my first urine test…keep uping pills………positive 4th morning next test.and after sample(because sample if first morning urine) I up zith to 500…….positive….. 6th morning last sample……..negative….is this because I got zith up to 500 2 days ago??? My next question is….is this lyme or just some other parasite….because even though I doubt/ed lymes…I would not be surprised if he has parasites…as since I can remember..he is chewing on something…(run over pen caps he found on ground…springs from pens…shirts..eeeettttcccccc) Finaly I want to add….that ds is about 90% at this point(give or take 5%)……ever since we started the parasite thing…I thought I saw healing!!!!!! I want to add that prior to strep exposure…and ds was ramping…I started hd vit c..absorci acid and liposomal….9000mg a day..and was considering herxing at that point prior….as I am doing same and have some healing going on for me….(I think).. My dan now wants me to see a llmd…luckily one I contacted in NC hwo is integrative md and supposedly treat pandas too!??!?!?!? I will be seeing next week…and I have another apt..in 3 wks for one in MD….. I was thinking of trying the parasite formula again….or should I wait……. THANKS TO ALL…..i guess I will be poking my head around the lymes board more….and thank you if you read all of this…..

A little back up…. Ds was ramping early Nov..thought he had strep..no…next day ds8(my new panda)comes off bus crying about throat….get him abx..ds8 at that point was still fine till Dec…we will get to him on another post as I am some how holding it together..and I think I am compartmentalizing (sp) is how I am doing it, but need support as my new fears for him rise…But my original panda is healing?! So I put ds back on aztih as strep exposure…a little dismayed..as I was still waiting for dot blot to come in.. It arrives..he’s been on aztih 250 for 2 weeks…my dan did not want to challenge the test…I figure I am spending another 3-400…I want to do something…so I got to herbal store and pickup this product there….and am kinda excited as it says it treats candida, which I think is a problem for ds…and I thought once I get it to full strength ..4 days…I will up aztih to 500…which I did http://www.google.com/products/catalog?q=internal+parasite+formula+healthforce+nutritionals&hl=en&prmd=ivns&resnum=3&wrapid=tlif12926013052151&um=1&ie=UTF-8&cid=5682337059954173445&ei=24cLTb6zIYK78ga8l-C9Dg&sa=X&oi=product_catalog_result&ct=result&resnum=1&ved=0CEEQ8wIwAA# so …he takes firs pill and I start 1 arganon pill with this protoacal..just to cover my bases.. 2nd day I do my first urine test…keep uping pills………positive 4th morning next test.and after sample(because sample if first morning urine) I up zith to 500…….positive….. 6th morning last sample……..negative….is this because I got zith up to 500 2 days ago??? My next question is….is this lyme or just some other parasite….because even though I doubt/ed lymes…I would not be surprised if he has parasites…as since I can remember..he is chewing on something…(run over pen caps he found on ground…springs from pens…shirts..eeeettttcccccc) Finaly I want to add….that ds is about 90% at this point(give or take 5%)……ever since we started the parasite thing…I thought I saw healing!!!!!! I want to add that prior to strep exposure…and ds was ramping…I started hd vit c..absorci acid and liposomal….9000mg a day..and was considering herxing at that point prior….as I am doing same and have some healing going on for me….(I think).. My dan now wants me to see a llmd…luckily one I contacted in NC hwo is integrative md and supposedly treat pandas too!??!?!?!? I will be seeing next week…and I have another apt..in 3 wks for one in MD….. I was thinking of trying the parasite formula again….or should I wait……. THANKS TO ALL…..i guess I will be poking my head around the lymes board more….and thank you if you read all of this…..

another, things that make you hmmmmmm article

didn't read other...but too low... my 32lber is on 100mg...afraid to low..might talk about 150 with doc... my 82lb does 250..but i see more at 500mg..then will drop back to 250..after a while...

will he make them cry??

yah..don't get informed from the other direction.. though i have to say ....each individual teacher we've had over the years, is awesome and we email regularly i actually had a conf early feb last year ..and was told the exact same thing..how can it be too late..we still had almost 4 full months to go??? it's only so funny because its too on target...

Quinny..i hope you find some aha moments here.. please give more info and continue to post did the ivig help at all... maybe you need more, at lower doses, more frequent.. did/are you using abx?? i agree you should continue to look for other infections, parasites, lymes, celiacs, other autoimminue conditions.. have you had your tonsils out.... i wonder if sammy"saving sammy" did or not..and that is why he had to stay on hd abx for so long?!!?! psoriasis..another auto condition....has some info about adults removing tonsils to aid or cure their psoriasisis ie my brother inlaw had impitego aaalllloooott as a child and has bad psoris and is looking into a ta my dh just had his out a week ago..and i hope i can heal him further..he is pandas and still gets strep 3x a year not saying that is the answer ...just something to ponder...as there are children who heal with the removal of them and don't need to go any further

i agree with trying abx's for at least 30 days...some say longer before they saw response and longer to complete healing... also make sure dose is high enough... ie..250 azith is dose a doc would give...(and typical doses used to work for him in the past) but i believe at this i see more at 500

what is the history of anemia...family or her specifically is it her... can't they check that????? This is just my opinion...and what i am doing... the main ds who i used to post mostly about had a ta in sept... 1 to see if that alone would heal him...as there are reports of such and i believe Pmom just posted the a similar story.. ..it seemed like it was working then not..then house hit with strep..better again...we may be trending better?!?!? jinx, jinx, double jinx...knock on wood, table, head(now that that is done ) 2 i didn't want anyting to hinder him,or regret not doing it, as we are in line for a big gun...may wait...as waiting on confirmatin if lymes dh just had tonsils out tuesday as an adult..it is a much tougher recoervery....but he gets strep 3 times a year...so we are doing it for dh and to erradicate strep from house.... I think it is an important part of the puzzle....but that is me...i don't want to backtrack... however if bleeding is a concern....i would definitely be leary too.... it sounds like you are dealing with alot...have you tried a steroid taper...some kids completely remit with that...or for us, got us to a much better baseline....until the next decision...