Fixit

what type of testing would that be?

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx DS started thyroid meds a couple of days ago Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly is clarithroymycine ok is prednisone ok

Before, when my ds was 5 and he would tic i would go get him tested and sure enough it was strep(and even before that) i would ask the doctors about pandas and strep causing tics...they would say never heard of such a thing/no such thing.....now that i am older and crankier my new moto is WELL YOU BETTER WRITE IT DOWN OR NO ONE ELSE WILL EITHER..as i'm trying to compile my notes i see the docs dismissed it and didnt' put it down. Anyway...i may be in a different position now as its been almost 11 months since onset and it looks like MP What i will tell you is , when my boy would get abx it would take about 2 weeks for a real change (mind you dosage was only for 10-14 days), i would see just a little easing in the begiining and they would continue to decline to zero tics by about 4 weeks....of course i was able to get abx w/in a week or 2 of 1st signs of illness,( not like now it's been so long, even though he did present with illness the day before onset)( i didn't know to look for myco P) I've never had a formal pandas dx

Did anything ramp up during the inital burst/ abx, and then calmed down before they ramped up again? Like a roller coaster up, down very low,then way up Did your daughter go to school duing this period? I would also like to know. Could there be something like a die off period like you hear about with Candida? My son at this point tics 200-300 times an hour as of the last month maybe longer.(i can't remember things anymore) .but you figure about every 10 seconds so that's more like 360 rotating between every part of his body or a vocal.....i would be happy with 1 a minute( i think) But I Want NONE!!!

My DS turns 10 tomorrow also!!!!! I AM SO HAPPY FOR YOU!!!! I hope i can come back next year and post the same great news FANTASTIC

well since i didn't have a specific target before now, i was all over the place as you have seen....gf/cf, exercises, tmj, allegies, vitamins& mins, low thyroid, etc we also started thyroid med, as not only to give his body a break but i've heard it helps with cyticokes and if we can get things to calm i'd like to get him off that too since he is so young...as mentioned i've again heard myco p can cause hashitmots..chicken or egg...myco causing damage or bad immuno letting myco in I would like to hit this hard up front at least with abx as they worked completely in the past and see where i am... I have per my question the other day, given ds 1 capsule of OReganal -oil of oregano last night and will continue to do so indefinitly it says 1 a day..is that enough? ds weighs about 80lbs now it says cert oganic ev. olive oil 140mg and wild oregano oil P73 capsul 100% beef gel BSE-free non-gmo should i give him 2? since it says olive oil would that be a sbustitie for olive oil leaf? should i give both? I will take any suggestions on natural abx, but that is all i know..of cours i will continue a clean diet and we just started to go cf again, as allergie season is here and want to keep his histamines down. were you saying something about coconut oil? I would love to hear it all and could you add what the purpose is..ie i'm cutting out milk again, as milk increases histamines levels Chemar...on the water for the toothbrushes, do you let the brushes sit in it all the time and how often do you change the solution? Thanks Chemar and Caryn if your there i know you have some good stuff too...and anyone please chime in

I find this interesting.....now I don't know if my son has myco and we still don't have much evidence of strep, but I too had a bad case of bronchitis that seemed to turn to pneumo because the first abx they gave me (Biaxin) didn't seem to do the trick. I was staying sick and got worse, couldn't even get out of bed, I was married and had to stay at my mothers. this was 1994, I remember because the winter Olympics were going on. After a different abx, I seemed to get better, but then relapsed about a week later and by that time it was walking pneumo, does that mean mycoplasma p.? is that what myco is? walking pneumonia? But my son wasn't born until 1999. I don't know what this would mean, however, unless I still had some form of that all this time? don't know, is that possible? ... (reminder, I have fleeting moments of some tic urges like head tightening or tapping)......I have had mycoplasma p. tested for my son recently and it said negative, but the PANDAS doc thinks it was not the exact right test, so we are doing it again. I'll post an update here. but interesting if that could be kind of passed down somehow? Hey faith.....i don't know if you kept reading down...but on 2 sites i saw where it says Myco P can pass through almsot everything it can feed off of...it can live in a specific organ, in the spinal fluid etc.and not be seen anywhere else....that was what i understood....and it can pass through uterus to the infant.... ..they don't know how long antibodies last, but not forever and you can get reinfected and upon reifection your igm will not rise again. ...and the thing is ..if its hinding like strep, in one location but can pass through things like a ghost...maybe you've had it all along and never got rid of it... ...my concern going forward is that i hope the docs keep us on abx long enought to get rid of it... many have relapses after being on abx after 6 weeks...one paper said they have had a better success of "cure, remission after 6 months"!!!!! even in the 1 paper it said they had the patients on abx for 2 months.

Does anyone have ling to Dr K site i must have deleted the link trying to clean up all my stuff..too much i called the office for the link on thursday and the lady they have there doesn't have it at that office....what?

What's HRT?

where is dr Chung? what vitamins and minerals is Nick on?

Hey Abbe, i read a couple of your threads....i don't know the whole stoyr on your son when did he start to tic/ what other remedies did you try? how did you come across dr chung... i am an former njian....where is dr chung located?

I hope she is coming around the corner!!!! Even when my son would remit after antibiotics...the first couple of weeks were minimal...then i saw a greate slide to the good side And i don't know your story...but you may need a longer dose??// and you may have some other thing, allergies,, gut issues working against you I sure if you start posting people smarter than me will help

Hey Chemar...does this answer any of your thoughts.. someone else of cours found this link to Myco P...F i think it's called but it says The Mycoplasma is a slow-growing, stealth-type organism that can cause the patient to be very ill. It activates the immune system, then can successfully hide from it within the host immune cells. It can then circulate throughout the body and go wherever a white blood cell can go. It can cause infection deep within any or all organs. It can even cross the blood/brain barrier and cause brain and spinal infection. It has also been known to cross the placental barrier to an unborn fetus. Unless the white blood cell is split open and examined for the evidence of the live organism, it can go undetected for years. Because the organism resides deep within the cells, conventional antibody tests may be relatively useless. (21) The splitting open (fraction) of leukocytes (white blood cells) from a fresh blood sample, with a forensic PCR test is the most accurate way to detect the presence of active infection with a live pathogen. Further gene-tracking techniques perfected by the Nicolson's are even more accurate. (22) http://www.rense.com/general7/microplasm.htm Also talks about Myco causin auto immuned disorders...lupus, hashimotss, adreanal over load, enviromental sensitivies

I am just trying to reconfirm also....if the strep is up in the sinuses it won't show positive on the quick test But we are saying the titers arent rising either(same may be if its in the gut or ears etc)...but still infected somewhere and still showing symptoms per some infection, just no "medical test" is confirming it...is that correct?

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I'm not the technical person here, but i don't think it is and if it is, it shouldn't be, just one strain of strep More so, I think it should be all bacteria Then mayb Pitands could carry the balance....

This is a link from the other side that discusses the same thing!!!!!! http://www.latitudes.org/forums/index.php?showtopic=7038

another thought on this MP.... it says they did a nasal /throat swab as anothr confirmng DNA test.... could that be done too, as in it might be hiding in his sinuses And what about a the CSF test they ran on the kids mentioned in the article??/ Someone here lost there brother to cancer and the only place they found the cancer for many years was in his spine and it didn't show up anywhere else till a few weeks before he became an angel!!!

as per this site...and i don't know how reliable they are it says Step 2Use oral erythromycin as the drug of choice for mycoplasm infections any thoughts on why Doc K or T aren't using this one http://www.ehow.com/how_2079184_treat-myco...infections.html as per this site it says myco feeds on amino acids.....so should i stop giving my ds his morning amino acids(Nac and glycine)??? and what about fatty acids...Omega 3''' should i stop giving those for a while too....or give so it feeds on that and not the brain...i'm getting confused . They have never been found growing freely as living organisms because they depend on their host for such things as fatty acids, amino acids, precursors for nucleic acid synthesis and cholesterol How do i help starve this thing http://s99.middlebury.edu/BI330A/projects/...pneumoniae.html

as per this site...and i don't know how reliable they are it says Step 2Use oral erythromycin as the drug of choice for mycoplasm infections any thoughts on why Doc K or T aren't using this one http://www.ehow.com/how_2079184_treat-myco...infections.html as per this site it says myco feeds on amino acids.....so should i stop giving my ds his morning amino acids(Nac and glycine)??? and what about fatty acids...Omega 3''' should i stop giving those for a while too....or give so it feeds on that and not the brain...i'm getting confused . They have never been found growing freely as living organisms because they depend on their host for such things as fatty acids, amino acids, precursors for nucleic acid synthesis and cholesterol How do i help starve this thing http://s99.middlebury.edu/BI330A/projects/...pneumoniae.html

sorry i always think of something late he is getting 400 iu (as D3 Cholecalciferol) in a daily cal/mag

Oh one more, son came up a little vitamin D deficient ....not super low but outside bottom limit. best way to take ...anythoughts

And this is from a member here,how she signs off on her posts i think its Tara something "All truth goes through three stages. First it is ridiculed. Then it is violently opposed. Finally, it is accepted as self-evident." -Schoepenhouer Not trying to steel your thunder DR T And thanks jewels

And this i wanted to add this too; Like the MS link someone , posted were people with MS have more iron in the brain....the question was why..do they normally just have more iron than others.....well the answer seems to be they can't shed the iron ,,,but i want the people who are supposed to be researching this to look at it from all angles...not just the 12 o'lclock postion but the 3:45 angle and then look at it form the back.and then get on top...OUTSIDE THE BOX maybe the common thread is lack of ablitiy to fight infection and then they are safe once the barrie closes You can fight strep and someone else can fight Myco P but for these kids it gets stuck Sorry i'm just an angry mom these days

I hope what i am saying adequately affirms what you are saying in your last 2 super awesome posts this is part of what i posted on the TS board And i bet you BUster already said this but with big words... PS ...Ds also started thyroid med for high TSH today My husband who has a blink and a head shake gets used to get strep by looking at him. he had it many times during my sons younger years and maybe before and during but i don't remember....the weird thing is as when my husband stopped getting strep so did my son..i'm gonna say 2 years with no pos strep for either...i will have to check with hubby.((( in the last 2 years, if ds did tic i took him to doc ...no strep...but since he was so subseptible the docs would give anti's anyway since he got it so many times, just in case we were catching it too early as he always presents with lumpy glands, and or including...sinus, throat irritation, chest something etc...his body is fighting something at the time of the visit...that they would attest too)))) so maybe the anti's were htting the Myco and i didn't know it but i thought if it's not strep those biotics are getting some other bacteria in his system...I new it was catching something when my hubby would have strep i can't say his tics were worse.. Because they can no longer (I don't think) cross the barrier( i know enough just to be annoying ).but when he was on anitbiotics, and i've said this to him a couple of times...."your tics seem MUCH better" and i noticed that a couple of times.....of course i've been poo pooed off saying .."no such thing as adult with tics having something aleviate it unless it''s over the course of age"..Now i'm having hubby checked for thyroid, lupus and Myco P since we are checking things So this makes me go back to thinking that that those common genes that they might be finding mean the lack of the ability to stave off bacteria AS now ds doesnt' seem to get strep but is getting something...that something is Myco P...and in one of the links i think i posted...it says most people don't need anitbiotics for myco P and can fight it naturally...again if i worded that right! Now as we get older our brain barrier is supposed to close....So if you get strep or Myco P that barrier is already closed and cant attack the brain Is that why TS is usually before the age of 18 prior to the barrier closing. And you get more strep as a kid so you might see it then(like my son)....now that ds is older his barrier is closing, he's not catching strep and...maybe it wouldn't matter now if he did because the strep bacteria is so big it can't get in..(the strainer grid size is getting smaller, refering to the brain barrier)..but the Myco P is so small it can still get in,,its the smallest genome http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae And that's why you rarelly see adult TS onset Because the barrier is closed even if you were suseptible I hope i haven't repeated this as a theory someone else came up with and that i got it out understandably this is a repeat What i;m saying is TS is way my kid may express an infection but your is ocd , or both or something else.....But i think that is what you said..i'm always a day late and a dollar short!!!!