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Augmentin/ Biaxin + Rifampin


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Quick question.

Our kids have been doing fantastic on the Augmentin/Clarithromycin combo (also post LD IVIG). We just met our pediatrician for a check-up before we leave for 5 weeks overseas. We've been on the PANS/PANDAS train for a couple of years+ hypogammaglobulinemia, and the boys have been at well over 100% for some time now. (PANS seems more of a symptom of the hypoG than a standalone issue).

 

Just to make sure we travel with a full arsenal on our annual vacation, the doctor is giving us Rifampin to take with us as well in case the boys hit a bump.

 

Has anyone used these 3 together? If so, why and for how long? We don't expect to need to use it, but I just wanted to check experiences.

Edited by Gpookie
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Pandas was obvious: strep (exposure) = behaviors. No strep= no issues. Cunningham panel. IgG subclasses testing. Genetic.

 

The biaxin was added after they contracted strep D while on treatment dose Augmentin. They don't tolerate lower dose of either yet. We don't plan on giving the Rifampin unless absolutely necessary.

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Gpookie, if you don't mind my asking, did your kids improve on antibiotics before you did the IVIg? Can you comment on what symptoms looked like when you started IVIg and what the schedule of improvement was?

 

We have not really seen improvement on antibiotics (lots, for strep/myco/lyme etc over a long time) and we are about to embark on IVIg (still waiting to hear about coverage - if we get coverage for the subclass deficiency, we will do LD monthly; if we pay out of pocket we will probably do HD monthly but I'm not sure).

 

I'm thinking about whether we may need to add substantial antibiotics again, during/after the IVIg, and how we will even know - I suppose I can ask to have strep and myco titers checked yet again when we are drawing for other things. Then there's the lyme question, sigh (labcorp negative, igenex positive).

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Our LLMD originally used biaxin/rifampin to treat DD's bartonella infection.

 

It produced herxing (die-off) symptoms which included increased fatigue, shin pain, emotional lability and headache. We were on vacation during the herx and we ended up having to get a wheel chair to get her from place to place (or around museums etc.).

 

Be aware of the possibility of an increase in symptoms or the development of new ones, which might be an indication of other underlying infections.

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Oh boy. Interesting I rarely check in anymore and here is:

Augmentin + Biaxin = your kids 100% for some time now

Augmentin + Biaxin = my kid had a GREAT year, most normal ever all around (not 7 yrs. this antibx combo, but 7 years of trying to heal infections, autism, Lyme, PANDAS, etc.)

Anyway, Augmentin pulled her out of OCD hel! trip of the decade, Biaxin calmed her ADD stuff, time passes, so I think, hmmmmm let's mix it up, let's take away,

Don't do it!

I say: keep your kid on the combo and enjoy every last drop of 'normal'

I tried to pull the Biaxin out, and OCD ramped right up, and ADD type behavior with impulse/ body.

(And Rifampin is tolerated by not too many). Now I am back to guessing, walking on egg shells, hating myself once again for getting my hopes up, even after months and months of 'pretty darn good/okay' (while on Augmentin/Biaxin, GF/DF diet)

If you are in peace and calm with a PANDAS kid, KEEP IT.

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Hi, thx. I'm sorry my question was misunterstood. We aren't at all thinking about taking the Augmentin or biaxin away. That was not my question. They need it at least for a year. We're not touching that.

 

We're just wondering if anyone had experience ADD ING rifampin to it (if they get another infection)

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What symptoms are you hoping to treat by adding the Rifampin?

You mentioned 'doing well, 100% -ish' while on the current 2 antibiotics (Aug./Biaxin)

Doing all 3 at 1 time is a heavy load, as you are aware,

but my point is more:

Rocking the boat by adding/ taking away without a specific purpose (chasing a phantom infection) is something that is DICEY with a PANDAS/PANS kid,

because when these kids tip over,

getting them back can be and often is extremely difficult.

My .02 cents.

No symptoms, don't further treat.

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Okay, maybe this will make my point more clear:

I don't know why this combo works magic.

I've been taking it apart and examining for 7 years.

Sure, some great 'Ah-Ha's!' and revelations,

but with a PANDAS kid,

all bets are off.

Sorry, but someone does need to say once in awhile

beating down and kill kill kill

doesn't bring all our kids back all the way,

sometimes the tamping down to normal life is the best we get-

managed recovery. Not, we missed something/ didn't treat enough different infections because we still have PANDAS/PANS behaviors off antibiotics.

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None. As mentioned in my original post, we are not planning on giving it now. Whenever we go on our 5-6 week vacation, our doc makes sure we have meds for all possible situations. So he wrote a script for Rifampin IN CASE they get another strep Infection while travelling, as described in my original post.

 

I was simply checking to see if anyone else had ever used all 3.

Never planned to change current meds without a reason.

 

Our PANDAS journey (4 years, not including stepdaughter!) has been quite mild, but yours sounds as if it was much more rough.

 

We've been in a great place with our kids for some time, with little interventions and not much guessing. It's all been pretty straightforward. You may have confused my question with someone else?

 

Take care and God bless!

Edited by Gpookie
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No, I'm not confused. Sure, I guess if somehow strep can break thru daily Augmentin with daily Biaxin, and I somehow got a positive throat culture confirming strep, I'd throw in Rifampin. And then consider tonsils out if strep can live in there like that-

HTH, glad to hear our same combo is working.

Have a good trip!

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Just wondering where i go to find a foctor who will treat with longterm antibiotics. Dr K says of no benefit beyond 28 days. But everytime we go off for more than a few days he starts sluding into manic and ivig is 20k which insurance wont cover. in iowa. thanks

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