Azith/Rifampin for Lyme/Bart

[Hopeny]

We have decided to treat DD8 for Bart, she tests negative but has neuropsych symptoms and foot sole pain. Also her ongoing leg pain is improved but still there. She also has PANDAS/Myco and very low immunity to Strep (immune to 3 of 14 strains as I recall) so our PANDAS Dr has had her on a regimine of Augmentin/Biaxin which has worked well on PANDAS symptoms and has reduced but not eliminated Lyme. Our PANDAS dr recommended adding bactrim for Lyme, however our LLMD prefers Rifampin and said Bactrim has some buildup in the bone in children. Biaxin interacts badly with Rifampin, so he and I discussed Azith/Rifampin or Augmentin/Azith/Rifampin. We see PANDAS doc next week so have not discussed this with him yet. Could anyone give me feedback on this combo/effectiveness/ etc? Thanks in advance

[LNN]

My DS has been on this zith/rifampin combo for quite awhile with good results. We've discussed an augmentin possibility with the winter months upon us (zith does not seem to protect my DS from strep but amox or augmentin work really well for him). But we also have cyst busting and biofilm issues to address in the coming months and our LLMD wants to be judicious with the amox/augmentin. So for now, our approach is zith+rifampin and a supply of amox or augmentin on hand that I give for 7-10 days at first signs of a Pandas flare or illness.

 

I think you may like this combo. It's worked for us.

[ShaesMom]

DS is on Azith/Aug/Rifampin combo since May. He has done really well on this. We added in the Rifampin after almost a year on the other two and for several months he would get a large rash every Tuesday on either one or both of his legs. Over the months the rashes became smaller and fewer. Since adding in the Rifampin I have noticed that his mood swings have improved; his temper isn't as quick; depression is better and he just seems happier again.

[rowingmom]

Biaxin interacts badly with Rifampin, so he and I discussed Azith/Rifampin or Augmentin/Azith/Rifampin.

Oh, dear. DD11 was on biaxin/rifampin for 8.5 months and seemed to do well with this combo - better than she has ever been since bitten in 2008. Her ticcing did not subside until we added rifampin. We have now completely switched to mino/azith/malarone (for babesia although she tests negative, and has had no herx to this combo) and she is the best she has ever been. Shin pain almost gone, ticcing gone, happy, compliant, well spoken. The kid I have always known she was. There now I am jinxed. LLMD told me at our last visit that mino and azith may help to rebuild myelin.

Edited November 7, 2012 by rowingmom

[momaine]

My dd's LLMD cautioned that Rifampin often makes ocd intollerable for kids who have that as a lyme/pandas symptom.

 

I am also being treated for lyme/bart. I'm presently using the combo of minocycline and rifampin (previously doxy and rifampin) with good results. When I tried to take Augmentin, I had an overnight improvement but found I was allergic and had to discontinue it.

[Hopeny]

Thanks all for the responses. LLMD prefers Doxy/Rifampin but DD HATES Doxy and it is just so difficult with her to get her to take it I don't have the strength for it, plus there is a tiny part of me that says if she hates it so much maybe her body is telling us not to use it. Other issue is it does not cover strep, although I think Rifampin may. I think the suggestion of Zith/Rifampin and Augmentin as a backup is excellent and manageable. Mommaine thank you, the OCD aspect is worrisome, I had not heard it, I guess we will just have to manage and see. DD is 8, LLMD brought up Mino but says he does not want to use it in someone her age. @rowingmom, maybe it would be good to talk to your Dr if you want to use that combo again: "...the addition of rifabutin in patients stabilized on clarithromycin therapy slowly decreased the clarithromycin area under the plasma concentration-time curve (AUC) and C(max) up to an average of 44% and 41%, respectively, at the end of 4 weeks of combination therapy. In patients stabilized on rifabutin therapy, the addition of clarithromycin significantly increased rifabutin AUC and C(max) after the first dose. After 4 weeks, average increases of 99% and 69%, respectively, were reported.Some experts recommend that this combination be avoided since it may result in decreased efficacy of the macrolide and increased rifamycin toxicity (e.g, neutropenia, uveitis)."

I am scared for a backslide and excited to see if this helps. DD has been doing so well but hip pain has returned and yesterday LLMD palpated her joints and every single one was tender, had not been like that before. When he moved away from the joints there was no tenderness. Ugh