Rifabutin/Minocycline

Is anyone on Rifabutin/minocycline combo for Lyme/Bart?  I am on Rifabutin 150 mg 2x a day and minocycline 100 mg 2x day.  I was fine for about a month now I think it's causing me to have very loose stool/diarrhea (sorry TMI I know). 

Is anyone else on this combo and do you have any issues with it?

I also did Rif and mino combo but with Plaquenil added. Pretty potent stuff and had a tough 8 to 10 weeks then had good improvements and got to about 85% healed. But relapsed about a year or so later.

Loose stool was not a major issue if I recall.

A couple days ago I had my best day in a long time - maybe best since having Lyme even.

And, I'm at two months of full dose Rif...2 1/2 since starting Rif.

I'm trying not to get my hopes up...but hard not to. Don't want the disappointment..if it was a 'one-off'. Hardly any pain that day, or shivers - not one hot flash/sweating episode. Vibrations/buzzing to a minimum.

Do you guys get a little bit of dizziness from the mino?

It's not as bad now...but at first my head felt worse... but maybe it was herxing...as I've had 'head issues' with the lyme/bart - which is one of the reasons I wanted to go on mino for the blood/brain barrier penetration.

Since the 'good' day, I've had some mediocre days...lol.

I am on 100 mg mino twice daily; 300 mg Rifampin twice daily. I take the mino 15 minutes after my Rifampin...and don't eat for an hour.

Some Dr.'s prescribe the Rif 600 mg once daily.

Yes, foot pain - worse in the morning...it did get a lot better when I was treating lyme - maybe the biaxin did it...as it is sometimes used in a bart protocol. The foot pain came back on the 2 1/2 month antibiotic break I took due to high liver enzymes.
Back pain - YES.

nerve issues - my worst symptoms. OMG - my LLND should have started Bart treatment sooner. 9 1/2 months treating lyme....

Do I have nerve pain???? YES, YES, YES

My very first symptom - was radiculitis - upper left shoulder blade area, left arm, hand. My arm went limp one night - couldn't feel it...lost all strength in it. Then many months later - it turned into nerve pain - upper left side of back, left arm, hand, finger pain....nothing touched it. I just suffered. It would flare every evening - with vibrations/pain...and then anxiety.

Also, have vibrations in my body - and also nervous system 'shivers' - like when you're scared.

A few days ago, I had the feeling like my thoracic area - front and back ribs - were being squeezed with vice grips. I couldn't take a full breath...and it felt like my back was going to lock up. I had not had that for over a year - it was a symptom I had off and on - and the "MS hug" - describes it. I don't think it's muscular - it's nerve related.
It lasted a couple days...and then the next day - I think was when I had my good day.

I don't know if the amount of Rifabutin is the same as Rifampin. It might be a different dosing. When I googled Rifabutin - I saw 300 mg on some websites for treating tuberculosis.
Whereas Rifampin - 600 mg is often mentioned...

So - maybe it's dosed differently. So - don't try to do 600 unless you read that it's used in that high of a dose.

That's just a sample of my symptoms. I have many symptoms including shoulder pain, knee pain, finger joint pain. I can handle those ones - the nerve pain is far worse.
The vibrations are awful, too...because they seem to ramp up my nerve pain.

I have lost the tailbone pain...thank goodness...that one was strange. Also no more tinglies on my scalp...and my clavicle lymph node rarely swells/hurts.
Muscles are still weak, but not as bad as they were.
My foot pain is worst in the morning, and gets better during the day/evening.
I think the bart could be the cause of your plantar fascitis.

Do you have anxiety?

When my symptoms first started I had anxiety - lasted for a few months, but actually improved before treatment.
Now I only get it when I have my hot flash/sweating episodes. The anxiety only lasts a few minutes.

Some symptoms are better - like the tailbone pain, and I don't have muscle pain anymore.
My finger joints have improved a lot - hardly notice them.

A few days ago when I had the good day, I was like 80% symptom free.

But it's back to symptoms again.

I still have the nerve pain, I think the vibrations are a bit better now.
I used to lay flown to go to sleep and my right leg would be vibrating - and that only happens once in a while now. My left cheek and jaw on left side don't tingle and feel numb or sore anymore either.

Still have knee pain and shoulder pain. But my frozen shoulder (left) is much better - just about have full range of motion back and am also getting more strength in my left arm.

So, yes some symptoms are much better...I just have so many to keep track of.

TOOTY - Dave's symptoms - are also consistent with bartonella symptoms.
The good thing is Rifampin is one of the antibiotics used to treat Brucellosis. (I would think Rifabutin would be, too)

From my understanding, for Bartonella, Dr. M prescribes a double dose of Rifampin (1200 mg Daily or 900 if 125 lbs or less) with Biaxin for 6 months followed by Rifabutin for 2 months although I do not know the Rifabutin doasge and would be interested if anyone did. I believe standard dosage is 300 mg/day.
He claims to have a high cure rate using this protocol

Richard - in a previous post, Dave mentioned the Rifabutin does is 300 twice or 600 once daily (same as Rifampin)

My daughter is on 900mg Rifampin but we are thinking of changing to rifabutin. We have a friend who is on 1200 mg with Biaxin as prescribed by Dr. M
There is an Ilads video where he talks about this regime. WIll try to post it when i find it

Rikky - I know someone who sees Dr. M and he isn't pulsing his biaxin and Rifabutin.

Mino with Doxy combo.....made me want to jump in my pool and take a deep breath....however,after finishing a 6 week round I felt "somewhat" better...go figure.

Rifampin was rough last year...same thing but it felt like it was wearing off and abusing my stomach.

Taking short breaks has helped with the gut issues.

r