I think this needs exposure over here!

[Fixit]

I hope this helps someone

I didn't find these someone else did on the Pandas side

My boy came up positive

 

http://www.journals.elsevierhealth.com/per...002082/abstract

 

http://ajp.psychiatryonline.org/cgi/conten...journalcode=ajp

[Chemar]

thanks Fixit tho this has had much exposure here over the years, including even the many candida discussions

 

PITAND (ie infection) causes of symptoms that manifest as TS or that are triggered in people with TS genes has been a concept around for a long time (I first learned of it in 2000)

 

however

 

once again this is a case where, just like with strep, SOME people with TS may have developed their symptoms because of an infection with any number of microbes

 

but

 

it doesnt mean EVERY person with TS has an infection!

 

just like the TMJ/Stack/Simms findings dont mean EVERY person with TS has a problem with jaw alignment

 

it just emphasizes what we have always seen by the many posts here that represent DIVERSE triggers for TS

 

I am relieved for you tho that you are getting answers and so hopefully effective treatment. i know how hard it is to be searching for answers while we se our kids suffering

[JTs-Mom]

Thanks so much for posting these!! My ds just tested positive for mycoplasma pneumoniae (both IGM & IGG). My doc only prescribed 14 days of antibiotic and I fear he may need a longer course since the infection appears chronic. These articles may help me convince him!

[Chemar]

I edited my post above as I really dont want to sound like I am stifling any convo and seeing JT's Mom post reminded me how many people dont always read back on old threads or do searches, and so may not see back info.

 

I am just so concerned that parents may miss looking for other things too when anything sounds like "ah! this is THE cause for TS!" that I keep harping on the diverse potential triggers for tics/OCD etc

 

we sure learned with my son that he has multiple triggers for his disorders, plus I am still not convinced of the overall safety with longterm prescription antibiotics etc on these developing brains and bodies

 

sorry if my post initially seemed abrupt

[CSP]

Thank you fixit,

 

I have wondered why my son seems to do better on anibiotics but has very low titers for PANDAS. I would say he would be a case with the predisposed TS; therefore, a higher risk of this micoplasma pneu. Do you have to have a Dr. request this test?

 

Thanks again.

cp

[Fixit]

thanks Fixit tho this has had much exposure here over the years, including even the many candida discussions

 

PITAND (ie infection) causes of symptoms that manifest as TS or that are triggered in people with TS genes has been a concept around for a long time (I first learned of it in 2000)

 

however

 

once again this is a case where, just like with strep, SOME people with TS may have developed their symptoms because of an infection with any number of microbes

 

but

 

it doesnt mean EVERY person with TS has an infection!

 

just like the TMJ/Stack/Simms findings dont mean EVERY person with TS has a problem with jaw alignment

 

it just emphasizes what we have always seen by the many posts here that represent DIVERSE triggers for TS

 

I am relieved for you tho that you are getting answers and so hopefully effective treatment. i know how hard it is to be searching for answers while we se our kids suffering

 

I realize that many things can cause TS and WE will hopefully find them ALL

But if its been know for a long time that this one is a commonality, then why didn't any of my neuros' or peditricians test for it or anything else...

THey tested nothing...a slap on the back and go deal with it....

 

And trust me, i 'm not shooting the messanger...but this seems more prevelant correlation when you are talking 17 out of 29 ts patients...in my sons early years he reacted to strep . and since it always went away with biotics i didn't sweat it....and the last 2-3 times he was neg strep but they gave me anti's since he was so subspetable to strep, but i guess it was getting a different bacteria(ie myco)....so i see a thread for my boy of Bacteria......I'M JUST DISCUSTED at the MEDICAL FIELD

Another thought would be maybe the genes they are finding, are the genes that make you more subseptible to these bacterias and not necessaly make you tic

It's more like you your body cant detox this out of the system the way others can, and it's in your body longer and it attacks the brain as it continues to grow because you don't have the fight mechanism

Like the MS link i had posted were people with MS have more iron in the brain....the question was why..do they normally just have more iron the others.....well the answer seems to be they can't shed the iron

I'm not saying i'm right on any of this,,,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

 

Sorry for the rant

I've turned into a very angry mom

[Chemar]

I realize that many things can cause TS and WE will hopefully find them ALL

But if its been know for a long time that this one is a commonality, then why didn't any of my neuros' or peditricians test for it or anything else...

THey tested nothing...a slap on the back and go deal with it....

 

sorry when I said "known" I didnt mean to the conventional medical community...I meant known from the discussions here where for years we have talked of other infections than PANDAS being able to induce tics/OCD in kids.

[Chemar]

I must say the recent talk here and on PANDAS forum does have me wondering too

 

if a parent had been infected with say for example mycoplasma before a child was born, could the child become more suceptible?

 

there is a school of thought in GI medicine that Crohn's may be caused by mycoplasma (I think the pneumoniae has been suggested?)

and I know some TS can be microbial triggered, so that includes mycoplasma

 

I had double pneumonia with bronchitis back in 1987 or 88, and my son was born in 1989. my oldest son was tiny when I got sick, but neither he nor my TS husband got pneumonia or were even sick when I got so ill. Oldest son is not TS

not sure which type pf pneumonia bacteria I was infected with tho as i realize there are several

 

I was immediately given antibiotics (injected and oral course) and seemed to make a good recovery. I seldom get colds or respiratory probs and they are over quickly when I do

 

I do wonder tho if something in my antibodies to eg mycoplasma may have impacted my son in the womb? tho I would have thought that kind of exposure, plus him being nursed for quite a long time, would have imparted more natural immunity to him?

 

any thoughts?

 

My TS husband had severe strep as a very young child

[Caryn]

I just wanted to add a bit if two cents here. I too feel that the constant and prolonged antibiotics are a dangerous road long term. I have mentioned this before on both this board and the Pandas board and each time I get my head chewed off.

 

I am a product of long term repeated antibiotic use as a child, just for anyone that wants to attack me for stating this.

 

I too agree that the causes are multiple and do believe that antibiotics are useful in lessening symptoms during an acute attack. But they are not a magic pill and cannot be used in isolation if a cure is to be found. When I say 'cure' I mean putting the disease state into remission.

 

I just want to end with a quote from Louis Pasteur, the father of microbial medicine, while on his deathbed. He said Beachamp, his professional rival, was right-- "the microbe is nothing; the terrain is everything."

 

If you try to treat a body that is in a diseased state with only antibiotics then you are not helping that body to properly heal to a point where the microbe no longer has the ability to flourish and wreak havoc. I agree wholeheartedly with Cheri. It is not the only answer and each and every child/adult with tics has varying causes.

 

We must all look at the inner working of the body's sulfation system. We must test to see where the weakness lies. The microbe does nothing if the terrain can be properly healed.

[Fixit]

I must say the recent talk here and on PANDAS forum does have me wondering too

 

if a parent had been infected with say mycoplasma before a child was born, could the child become more suceptible?

 

there is a school of thought in GI medicine that Crohn's may be caused by mycoplasma (I think the pneumoniae has been suggested?)

and I know some TS can be microbial triggered, so that includes mycoplasma

 

I had double pneumonia with bronchitis back in 1987 or 88, and my son was born in 1989. my oldest son was tiny when I got sick, but neither he nor my TS husband got pneumonia or were even sick when I got so ill. Oldest son is not TS

 

I was immediately given antibitotics (injected and oral course) and seemed to make a good recovery. I seldom get colds or respiratory probs and they are over quickly when I do

 

I do wonder tho if something in my antibodies to mycoplasma may have impacted my son in the womb? tho I would have thought that kind of exposure, plus him being nursed for quite a long time, would have imparted more natural immunity to him?

 

any thoughts?

 

My TS husband had severe strep as a very young child

 

As per this site http://www.health.state.ny.us/diseases/com.../fact_sheet.htm

They don't believe antibodies for myco carry over or go on for a long time.....if i got that right....

You can get it again but they don't know the time frame for reinfection

 

Ds has just today also started thyroid med for high TSH

 

I don't recall being sick during pregnancy..But i will say that i couldn't watch tv or look at the computer or sit up w/o feeling sick for the 1st 3 months....

Morning sickness or was there some bug that more women than they realize and it's not hormones but an illness....And isn't it true that when you are pregnant you are more prone to illnesses

But just after he was born i found out i had a thyroid problem...and thyroid problems run on ds' dad side too

 

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..I don't think they could cross the barrier( now that 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 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....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

[CSP]

So Caryn, (BTW HI)

 

After treating my son's yeast better with coconut water then the medication the Dr. gave us, is there microbe killing foods out there we could be upping in our kids diet that could help with infections?

 

CP

[Fixit]

I just wanted to add a bit if two cents here. I too feel that the constant and prolonged antibiotics are a dangerous road long term. I have mentioned this before on both this board and the Pandas board and each time I get my head chewed off.

 

I am a product of long term repeated antibiotic use as a child, just for anyone that wants to attack me for stating this.

 

I too agree that the causes are multiple and do believe that antibiotics are useful in lessening symptoms during an acute attack. But they are not a magic pill and cannot be used in isolation if a cure is to be found. When I say 'cure' I mean putting the disease state into remission.

 

I just want to end with a quote from Louis Pasteur, the father of microbial medicine, while on his deathbed. He said Beachamp, his professional rival, was right-- "the microbe is nothing; the terrain is everything."

 

If you try to treat a body that is in a diseased state with only antibiotics then you are not helping that body to properly heal to a point where the microbe no longer has the ability to flourish and wreak havoc. I agree wholeheartedly with Cheri. It is not the only answer and each and every child/adult with tics has varying causes.

 

We must all look at the inner working of the body's sulfation system. We must test to see where the weakness lies. The microbe does nothing if the terrain can be properly healed.

 

Sure....that's why once I get his healed...i will continue and continure to try to do better at keeping the state of the body in tip top condition

getting enouogh rest, drinking water, exercise, no preservatives, everything that wont' kill , in moderation,, vitamins..Omega 3's etc

[JTs-Mom]

Cheri - Don't worry... your message is getting through loud and clear (at least for me anyway). Thanks to this board, I decided to seek out a DAN doctor in my area who would (hopefully) run a bunch of diagnostic tests to look for any and all possible underlying conditions that could potentially be causing my son's tics. Fortunately, he was willing to order many of the tests I requested. I specifically mentioned mycoplasma after reading it on this board and sure enough... he has it. We are also testing for Lyme and related coinfections (my ds had a deer tick bite in 5/08, but has never been tested), yeast, food intolerance, and a few other things... still waiting for those results. The test results we have already received also showed my ds has low cholesterol (too low)! I have since found several articles indicating that mycoplasma feed on cholesterol!

 

Like Fixit, I am frustrasted with conventional medicine docs who constantly blow you off as the 'paranoid mom'. I am not convinced that mycop is THE cause in my son's case, but I am extremely glad we found it and am very curious to see what happens with this course of antibiotics. My ds was on antibiotics twice last fall and both times I saw a significant decrease in his tics. At first, I thought it might be coincidence, but the second time I really began to wonder if there might be something to it. I do not suspect PANDAS because my ds had strep in Oct with no exacerbation of symptoms and his titers have been tested twice... normal.

 

I have actually searched through old posts when researching a specific topic, but I had not seen those articles, so they were very timely for me. One of the articles mention a 4-week course of antibiotics, which is what I would prefer (rather than 2). I understand there is some risk to long-term antibiotic use (though 4 weeks doesn't seem excessive to me), but we are talking about the potential of bugs in my kids brain here! To me, the risk of NOT treating for a longer course and running the risk of not fully eradicating the bugs is far greater than the risk of a few more weeks of antibiotics.

 

I'll continue to explore as many paths as possible until we run out of paths... then, if it's TS, it's TS.

 

Thanks to everyone on this board for continuing to share info and ideas!

[Fixit]

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

 

best way to take ...anythoughts

[Fixit]

sorry i always think of something late

 

he is getting 400 iu (as D3 Cholecalciferol) in a daily cal/mag