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Posted

Yesterday we ruled out lyme and today moved forward with the beginning of a 30 day steroid taper and Biaxin 500 mg, 2 x a day. She has mycoplasma and chronic sinusitus. She has had only one of the Biaxin doses for the day so far and one dosage of the prednisone, and she is obviously worse than before. High OCD, gray color in her face, body is sore, falling apart!!!

 

Can this be herxing or does she have a problem with the steroid? I remember she had big valleys on the a 5 day burst we did a while back, but there were a few good days in the observation period too, which lead Dr K to say she'd be a good candidate for ivig.

 

Anyone else experience this? Why is her face gray on the steroid? This makes me very nervous. I had such high hopes for starting out with these two "guns" and knowing we are out to kill the myco.

 

If it is herxing, how long before things might turn around?

 

Thanks.

PANDAS McNuggests w/fry/coke

Posted

My dd was on 1000mg a day and day 5 was horrible. After that it was a miracle drug. She did relapse after she stopped taking it and we did a steroid burst with very little effect. It has been posted that steroids and myco may not be a very good mix.

Posted (edited)

Yesterday we ruled out lyme and today moved forward with the beginning of a 30 day steroid taper and Biaxin 500 mg, 2 x a day. She has mycoplasma and chronic sinusitus. She has had only one of the Biaxin doses for the day so far and one dosage of the prednisone, and she is obviously worse than before. High OCD, gray color in her face, body is sore, falling apart!!!

 

Can this be herxing or does she have a problem with the steroid? I remember she had big valleys on the a 5 day burst we did a while back, but there were a few good days in the observation period too, which lead Dr K to say she'd be a good candidate for ivig.

 

Anyone else experience this? Why is her face gray on the steroid? This makes me very nervous. I had such high hopes for starting out with these two "guns" and knowing we are out to kill the myco.

 

If it is herxing, how long before things might turn around?

 

Thanks.

PANDAS McNuggests w/fry/coke

 

First off - i am glad to hear her lyme was negative. That is a good place to start and it is good that you looked into it.

 

Regarding the mycoplasma - Was her mycoplasma IGG elevated or IGM elevated?

 

Also - my son has (with chronic sinusitis PITAND) has had trouble with his behavior with biaxin since he was a preschooler. I can remember asking the doctor if biaxin caused hyperactivity because it was always so obvioius to me - all the other antibiotics calmed him down, but biaxin increased symptoms in him. Obviously... all kids are different - just thougtht I'd share.

Edited by kimballot
Posted

Only my personal experience - but we were advised to wait until the infection was cleared before using prednisone. But I've had other doctors, esp. several immunologists, tell me they prescribe prednisone at the same time as abx for sinus infection in order to reduce swelling and allow nasal passages to drain. So there doesn't seem to be consensus. But one option would be to give the abx a chance to fight the infection first and then add the prednisone back in.

 

As for the gray coloring - I think things like dark circles under the eyes, pale skin - is common for sinus infections. So that's a possible explanation. Make sure she has enough fluids.

 

Of course, these things always happen heading into a weekend. I know the term "herx" is used loosely on the forum, but I *think* it really only applies to die-off of spirochetes like those in lyme and syphilis, not other bacterias. I don't know if myco is a spirochete, but you don't typically get worse before you get better when you take abx for non-spirochete bacterial infections. (the die off of certain strains of GABHS can cause scarlet fever, but you don't feel sicker, you just get the rash). You may want to call the doctor today and get his/her take on the situation.

Posted

I agree about calling the doc. You may want to just try one at a time for now to see which med is causing the effect. I will add that when my son started on Biaxin it caused an immediate mood elevation in him. Almost manic, certainly hyper. This lasted about 3 days. I will also add that it took several weeks before we saw a more steady improvement from this drug.

Posted

Thanks Tired Mom. Do you remember why they may not be a good mix? I've been searching and have not found anyhting, saying why steroids msy not be good with myco.

Hope someone chimes in and helps. It has been posted numerous times and I can not seem to find it either.

Posted

Thanks Tired Mom. Do you remember why they may not be a good mix? I've been searching and have not found anyhting, saying why steroids msy not be good with myco.

Hope someone chimes in and helps. It has been posted numerous times and I can not seem to find it either.

 

 

real quick..

i thought it was bad...

we started both at same time and things really ramped (though the steroid did give us 4 really great days) we rebounded back to the bad point...in our case allergies have to be considered too..

if i could do over....

do biaxin 30 days...

then do(jmho) a taper..if you don't think biaxin had any effect...if it does work..maybe retest to see myco p levels or extend till you stop seeing improvement...then taper...(i am not a doc...just my experience)

Posted

[One other thing. Has anyone used azith for myco? That's what Dr. B. has me taking (my IgM was very elevated.) I've never taken Biaxin, but both my kids are allergic to it (hives.)

 

Also, if my boys are both elevated with IgG for MycoP, should they be treated for it, too?

Posted

[One other thing. Has anyone used azith for myco? That's what Dr. B. has me taking (my IgM was very elevated.) I've never taken Biaxin, but both my kids are allergic to it (hives.)

 

Also, if my boys are both elevated with IgG for MycoP, should they be treated for it, too?

 

 

i would suggest it....

somewhere and i think it should be on your lab work..

once you get myco...your igm may not rise again on reinfectons..

what for rising igg...

 

ds igg went down..but it just went up a little...wondering if it is still an issue here...

but it wasn't a lot...so there could be lab error and such...i will retest in a few weeks...

Posted

With our daughter, both myco igg and igm were elevated and when we did a retest a few weeks later, just the igg was elevated.

 

I think the pale face is steroid related b/c I saw it on the 5 day burst too and at no other time. I'll keep an eye on her and consider calling doc. She woke up noticably happier :D and now is sliding down......but no pale face yet. :unsure:

 

Also, steroid brochure says no NAISDs and tell your doctor if child is on a microlide!!

Well the same doc prescribed both and said do at the same time!

 

I don't see how I can stop the steroid since she started it yesterday. It is supposed to be dangerous to quit cold turkey, right?

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