sorry to post again..screaming out of control! do i email doc L or

[Fixit]

ok...another mom in crisis...

 

ds his hopping jumping every step...

he is sitting there trying to hold his lips together to not let the screams out....

 

i think it is still myco p...as per the rising titers i mentioned

 

will pex clear this....

will ivig...

ds has no strep titers...and with other bacterial infections he would remit 100%

 

we can't kick this!!!!! is myco p diffferent....

like the turkish study..i am afraid it is hiding somewhere...

is there such a thing as an abx drip for myco p....

who would prescibe this...as we sit here he hit that note that blocked out my hearing for a second!!!!!

 

OMG....has anyone treated myco p with ivig ..does it do the same thing as it would do if it were treating strep...

 

please does anyone have answeres.....

i am ready to go.....

 

i am calling doc L in morning....i've got to get pex done....

should i email her or talk to andera in morning!!!!

[Stephanie2]

Where are you at with vanco? Did you just start it in the past few days? Could this be die-off? Is he also taking diflucan? Have you done an OAT test?

 

I really have to wonder if the chronic azith is making things worse and the vanco just can't catch up to the clostridia b/c the azith is making it worse each day. I think that is what is happening at my house right now. DS5 got a HUGE dose of azith on Friday and I don't think the vanco can do it's job this weekend after such a hit. Will take a few days off azith for the vanco to work I think.

 

I could be totally wrong, but don't want you to spend $20K if it's just the azith sending you backwards...

 

I always felt annoyed with Scott b/c I had to beg borrow and steal for azith, but now I see why he didn't want our kids on it daily...

 

I really think you should call Scott and/or Dr. Rossignol.

Edited September 13, 2010 by Stephanie2

[Fixit]

Where are you at with vanco? Did you just start it in the past few days? Could this be die-off? Is he also taking diflucan? Have you done an OAT test?

 

I really have to wonder if the chronic azith is making things worse and the vanco just can't catch up to the clostridia b/c the azith is making it worse each day. I think that is what is happening at my house right now. DS5 got a HUGE dose of azith on Friday and I don't think the vanco can do it's job this weekend after such a hit. Will take a few days off azith for the vanco to work I think.

 

I could be totally wrong, but don't want you to spend $20K if it's just the azith sending you backwards...

 

I always felt annoyed with Scott b/c I had to beg borrow and steal for azith, but now I see why he didn't want our kids on it daily...

 

I really think you should call Scott and/or Dr. Rossignol.

 

Thanks Steph...I AM SO SORRY .. you are having a rough time too...

i just picked up rx of vanco and diflucan...

however..ds is getting tonsils out on friday....so...if i need to do another taper..i am hesitant to start vacno until such time as the steroid will probably put me back in the same predicament????

 

do you think it could just be myco p re arrizing as per ds numbre coming up 2 weeks before screams arrived...

could azith cause a herx 10 days out like lymes..

 

OMG the screams!!!!! OMG OMG OMG!!!!!!! Somebody make it stop PLLEEEAAASSSSEEE!!!!!!!

[Fixit]

I know every kid is different but Azith and biaxin both made my kids much worse as did Augmentin. We did a 360 on Keflex and then Omnicef. Different family of antibiotics. If this is a very different way for your child to act and Azith is new. That is my guess. Perhaps Benedryl might help in a pinch? Prayers are with you Fixit.

 

Nancy

 

He is such a good boy...i just don't understand..

Thank you for replying....

will kelfex or omnicef work if i suspect intreacellular myco p

as per the turkish study..i am afraid of relapse as i a 95% certian somehow this MP is hiding...

is there a drip they use for hard core MP infections...

 

or is it that MP set off the strep antibodies somehow..

 

or is it none of the above and its auto immune and like doc K said he hasn't seen a burst(not sure if he used taper) that lasted longer than X time... we've had blips..i thought maybe we lost a smidge day 38 post That was friday 9/3/10 but we held and slipped a little more 9/7/10 day 42 post...and now day 47 post...i'm ready for the big guns...

but like steph says if its something else ...like the gut...will any of this help..

i have not started the vanco ..per maybe needing taper after tonsils..

how long post tonsils will i know if i need taper

 

OH CR^P...if screech is back..what about getting tonsils out and the strain on the muscle????

OH Cr......

Do you think doc L will prescibe a valium for 5 days or so....the poor kid

 

I want to post this to get some replies

 

I TOO DO NOT KNOW WHAT I WOULD DO W/O EVERYONE HERE!!!!

[texascatholic]

we are almost 2 weeks into zith and still problems. We couldn't bring DD8 to Mass for the third Sunday in row due to her screaming if we don't comply immediately with OCD rituals. Still hoping and praying things get better.

 

God bless you all,

Holly

[Fixit]

we are almost 2 weeks into zith and still problems. We couldn't bring DD8 to Mass for the third Sunday in row due to her screaming if we don't comply immediately with OCD rituals. Still hoping and praying things get better.

 

God bless you all,

Holly

 

i went to half a mass yesterday by myself...

all i do is bawl my eyes out..i think i felt the downward spiral...

it's too much stress to take the fam...

ccd starts tuesday for middle guy..not taking oldest, again trying to keep stress down

 

do you know what the trigger was for your dd?

was it mycop ...do you think it could be herxing???

i think we have it hiding in his spinal fluid or something...

it concerns me as per the turkish paper i keep mentioning...

otherwise..like when my ds had strep..his pandas went away...

and like sammy who had high titers..you treated the titers and the condition remitted..though it did take a long time...

 

we just had a rise in the igg..from 1.60 to 1.79..and i think about it..tha't pretty big if you are measuring in .01 increments...it went up .19!!!

 

are there myco p specialists???? tpotter would like to know too

[trggirl]

Fixit, I don't remember....did you ever try the L-Carnitine?

[Fixit]

Fixit, I don't remember....did you ever try the L-Carnitine?

 

no i haven't....

when i asked the dan about it...and i mentioned that some had great results and in some cases it made it worse..

he said that it can create more yeast????

is that wrong????

does l-carnitine help with yeast???

do you know what the mechanism is....not that i would fully understand..but if you could give me an analogy

[Fixit]

we are almost 2 weeks into zith and still problems. We couldn't bring DD8 to Mass for the third Sunday in row due to her screaming if we don't comply immediately with OCD rituals. Still hoping and praying things get better.

 

God bless you all,

Holly

 

one more thing...can't put ds on aug xr long term as he needs diflucan with it

but i wonder if it weren't hd if it would be ok...

maybe try low dose after tonsils but that seems silly to try to end up with almost certain joint pain....

as he needs diflucan with steroids and vanco as well

I guess his gut is just ^&^^**!

[Stephanie2]

Yes, carnitine can create yeast but I have no idea why or how. I just really think you are looking at a gut issue. But I know nothing about the myco p thing. Maybe he got it again? Why else would the titers be rising again? Did he have the screech last time when he had myco p?

 

Maybe you should start the vanco now and not worry about whether or not you will need it later. After all, you have no idea if you will be doing another taper or not. Many ppl need several rounds of it before they can call clostridia (or other bacteria) a thing of the past.

 

I will pray for you and everyone else on this board as I drift off to sleep tonight. It's a real rollercoaster and we need to hang on tight!

[peglem]

The thing with mycoP is that it doesn't have a cell wall so it must go intracellular- that is what it does. So you need abx that will go intracellular as well.

We just finished a 2 hour scream fest here...this has been brewing/simmering all week and I've never seen an exacerbation take so long to go full on. I'm going to call her doc tomorrow and see if we can do another course of rifampin. Dang it, I hate that stuff, but it sure fixes her right up (after 2 weeks of ######).

[trggirl]

Fixit, I am not sure of the mechanism or why it might or might not help. I have searched before and I haven't come up with anything. I wish I could. It's interesting to me that it works on some people but not others. I wish I knew the connection. Sorry for what y'all are going through. Hang in there.

[tpotter]

I just saw my name mentioned. 2 people just PM'd me saying to see the LLMD, and that it does need to be long term. I'll also talk to Dr. B. (he's my immunologist, but I don't want another thread to start like the Dr. J one earlier in the week :-), so I didn't mention his name.

 

They both agreed it was probably herxing for me. My IgM is over 1100, and my boys' IgG is about 1.8 (my 17 yo), and 2.8 for my 14 yo. My 14 yo has always been sicker, is more affected in school, etc., but part of that is because my 17 yo also has Asperger's and had support from the minute we moved to PA, whereas my 14 yo, who was supposed to get support, only had the district fight us for 3 years, and that made him even worse.

 

I do have a call in to an LLMD for the boys, and I think I'll add me on to that (he doesn't take everyone, so my fingers are crossed that he'll take my family. Also, my DH is going to ask his dr. to test him today for MycoP, because the rest of the family has it.

 

BTW, what is the Turkish study? The only one I know about has to do with doing PEX on older adolescent/young adults. I'd like to read it.

 

Also, I keep you in my prayers, that both you and your child get through this.

 

Trudy

[PhillyPA]

Be careful with Valium. Valium had a paradoxal effect on my son. He took a Valium and was up all night. It makes him hyper and unable to settle down. Thought maybe it was a fluke, waited a week and tried again during the day. He was totally wired and hyper.

[Fixit]

tpotter..i believe i will do the same..more to treat the myco p.....

 

the weird thing is jumping started this current journey..and the vocals started 3 days after staring biaxin but i also started a steriod about the same time..just 1 days staggered....

 

so not sure if it was the biaxin causing herxing..or steroids bringing up the yeast....or both bringing up yeast.

 

the turkish paper is the same you mentioned... i am curious as to their relapse...???

did they need ivig after to reset the memory..???

was it that myco p never left their systme and just repopulated???

if it is as invasive as thought..they would need to be on abx for a couple of years...like gulf war syndrome patients...

why do also to of ts patients show high myco p levels....

and ds would remit with strep..and other bacteria that presented in tonsils and docs where concerned that even though swab was neg..his history made them nervous and they would prescibe abx..not based on his tics..but based on history and his throat presentation...

 

as i ponder why this episode won't go away 1 year 5 months later...it makes me think i am not getting to the culprit....and the culprit..i am almost certain is mycop... my concern is there hasn't been enough focus on it to figure out how to successfully treat pitand patients with this trigger.

 

and part of the problem that you and i face..i'm assuming this is the problem...we didn't catch it at onset...to get it before it proliferates....you are talking years...and ds has been at least 10 months..

how quickly does it replicate and or migrate??

 

so i will ask how long and what combo of abx does ds need...?

who treats gulf war patients????