Augmentin/ Biaxin + Rifampin

[SSS]

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

Honestly, if you see that response with antibiotics, switch your Dr.

Top of this page has a list, or/ and this book:

https://www.amazon.com/Childhood-Interrupted-Complete-Guide-PANDAS/dp/1492974862

Or, a Lyme Literate Doctor (LLMD)

Dr. K is *known* for going IVIG.

[sf_mom]

Congratulations on your children's recovery and enjoy every minute of your vacation.

 

Yes, you can ADD Rifampin to current antibiotic protocol. Our children have been on the same combination in the past along with IVIG for Selective Immune Deficiency. One thing you should be aware of regarding Rifampin........ you should not stop and restart for brief periods of time. So, if you start taking it...... take the entire 5 weeks you are away.

Edited June 12, 2016 by sf_mom

[Gpookie]

Thank you, sf_mom! That's what I was looking for. My kids also have SAD (mild PANDAS).

 

If we need to start we will definitely do the entire course (hopefully, we won't need to start).

 

Thank you for the insights :-).

Edited June 13, 2016 by Gpookie

[James_d]

Yes, sf-mom is correct, it can be added. Rifampin has been used by some when strep titres dont come down despite using other antibiotics. Be aware it can turn urine, sweat, and tears a dark/orange colour. I would also say that if it is being used for more than a few weeks, liver enzymes should be monitored.
Also if you are finding die-off and later improvements with rifampin, you may need to consider the possibility that there may be other underlying infections, such as bartonella. Rifampin is often used for bartonella.

Hope this is helpful.

[Gpookie]

Thank you, too, James. That is also helpful :-).

[Gpookie]

Well....we are finally back from our long annual vacation. I must say, things did not go as expected ;-).

 

The boys stayed excellent through the entire 6 week trip (no bumps!) and we did not have to use the Rifampin :-). They remain at such an awesome level (I'd say 200%+ since we added Biaxin in March) that when we had our regular check-up with Dr. L last week, she suggested that we stop the Augmentin that they've been taking for 3 years. In a big leap of faith, we stopped the Augmentin from one day to the next. It's been a week and no issues! However, they are starting summer camp this week, so we'll see how they do around other kids and when school starts. If they regress, we can always add it back.

 

We also drew bloodwork on Saturday to see if their IgG subclass levels have held. If they are lower, we'll start the monthly LD IVIG again. They'll keep taking Biaxin for the foreseeable future...

 

Thought I'd circle back in case anyone was wondering how it went ;-).

[airial95]

Not Biaxin, but we have done a cocktail of Augmentin/Azith/Rifampin and Azith/Cefdinir/Rifampin for years. My son is on Azith/Rifampin long term (have never been able to get him off the rifampin without regression) but he still tests positive for strep a few times a year - which is when we add back the Augmentin - which usually does the trick. My daughter is on Azith/Cefdinir long term and we add rifampin when ever she tests postivie for strep (which is also a few times a year).

 

Without the cocktail they are on, they both typically test positive for strep every 6-8 weeks or so...