Rifabutin + Zithromax treatment protocal

Hi Guys,

So my doctor switched me off of rifampin+ mino to rifabutin+ Zithromax. I have lyme and bart but bart seems to be the main infection so my doctor wants to treat that aggressively. What is everyones experience with Zithromax(azithromycin) or rifabutin? Ive heard rifabutin causes horrible herxes but does it actually help people after the herxes are done with? Im afraid to take this combo but if its helps the end im all for it. Id appreciate hearing everyone else's experiences with these medications!

I can give you my experience with a lot of these drugs. I am also fighting Bart primarily. I used Minocycline / Rifampin / Bactrim to get to about 90% of my capacity. Felt so good that we decided to try to stop the meds after around 1.5 years on this protocol and see what happened. My symptoms returned within a few hours (eyes, ears and got zero sleep). My LLMD decided to change things up with a new Bart protocol of Zithromax, Rifampin and Pyrazinamide. For the first few weeks I felt tired and needed to sleep a lot on the new protocol. I did feel like it helped with my eyes and at times I felt like I was improving. I was definitely having a flare up of symptoms like clock work every week or so. My eyes started really bothering me and I had a lot of trouble sleeping (again). It did feel like many of my symptoms were returning on this protocol.

After about 2 months on this protocol I talked with my LLMD about changing over to the protocol suggested by Dr. MR. New protocol was Biaxin / Rifabutin / Methylene Blue. 2 drugs for growing Bart and 1 for persister Bart. The first 8-9 days on the new protocol went fine and I noticed a few things, it definitely cleared up my eyes a lot and I noticed that it had a large effect on my neurotransmitters (for instance I did not feel tired at all when it was time for bed).

On day 9 I got hit with a bad herx (or reaction to Rifabutin) we aren't sure which one it was but a big mistake I made was that I continued taking all of the meds and then got much worse. I developed a strong fever, had the chills and was not able to sleep at all. It really felt like I was dying it was scary. So the moral of my story is if you are going to use Rifabutin I would SLOWLY work up to a full dose. If I try it again I will do 1 150mg tablet a day for a few weeks to try and work up to it and then as SOON as I herx I would back down to nothing to give my body a chance to recover. Good luck and let us know how it goes.

BrianinPA said...
Girlie - at what point did your sleep improve or get better? I can't stand the 2AM WIDE AWAKE that Bart gives me.

Initially I was waking a few times a night - in a panic, with sweats. That was prediagnosis plus another year after treatment. At that point it reduced to just two wake ups (one in the middle of the night and then in the morning) with sweating and panic.

It slowly got better with treatment and time. I think it was a couple years into treatment before it lessened to just waking up in the morning with mild sweating.

And now I wake up - no sweats, no anxiety/panic. But I still can’t sleep in like I used to. Once I’m awake - I get out of bed.

Girlie- thats great to hear you are almost symptom free! So in conclusion, do you think rifabutin helped you get to where you are today?

BrianinPA- thanks for sharing your experience! Are you back at 90% now or where do you stand? I will definitely take rifabutin slow and up my detox. Did the rifabutin help after you got over that day 9 hump?

I may try the azithro+ rifampin for a bit before switching back the rifiabutin in for the rifampin. Im about 15-20% better from where I started after and I need more progress which is why my doctor wanted me to switch