HealingWell
Search Close Search
☰

Rifabutin protocol for persistent Bartonella

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/13/2019 4:45 PM (GMT 0)
Hello,

Long time member here with a new name (forgot password, was Flowergal). Been doing quite well with the exception of a new bite last year - back on abx for 9 weeks, and a new bite this year - back on abx. I wear natural repellent, stay inside but if I have to go out I spray my feet/legs with Deet. Still get bitten anyway in areas exposed.

Have been treating with Byron White A Bart and ADP for the last couple of years with minimal problems. However I just met with my hormone specialist MD who has been researching Bartonella. He thinks I have "persistent" bartonella and the new bites just make it active as my immune system hasn't ever cleared it. He wants me to see an LLMD rheumatologist in Maryland who specializes in Bartonella. However, he is very expensive - he treats with Rifabutin and believes it is the only drug that will kill persistent Bartonella.

Does anyone have a protocol they follow with this antibiotic? My LLMD in NJ is very helpful and may be willing to try a new approach if I can find out what the protocol should be with this drug.

FYI I did three years of multiple ABX combinations to clear lyme, babesia and bartonella. I drink citus tea, take astragulus, multiple supplements and no longer go outside except pretty much to my car. I have an indoor cat and a dog who goes in and out. She is a white short haired dog so easy to see bugs - we use seresto collars and have had no ticks.

My other question any new ideas on how to make myself unattractive to bugs ? I spray my shoes with permetherin too. So far a black fly bite, a mosquito bite and now an unknown bite on my hand have caused a resurgence of symptoms over the last three spring/summers.

Thank you for any help you can provide.
Posted 5/13/2019 8:11 PM (GMT 0)
Hi Flowergal

Rifampin and Rifabutin are standard Bartonella treatment.
Were you not on it with your prior treatment?

So yes - it’s a good protocol - Rifabutin plus another antibiotic paired with it.

You can spray your clothes/shoes with Permethrin for protection.

Note: I’ve read Permethrin (when wet) is poisonous to cats
Posted 5/14/2019 10:38 PM (GMT 0)
Who is your llmd ? I live in NJ as well
Posted 5/14/2019 10:56 PM (GMT 0)
“He wants me to see an LLMD rheumatologist in Maryland who specializes in Bartonella. However, he is very expensive - he treats with Rifabutin and believes it is the only drug that will kill persistent Bartonella.

Does anyone have a protocol they follow with this antibiotic?”

The Bart Guru (Dr M) usually treats with Rifabutin and Biaxin. He may start with Rifampin (if I’m remembering correctly) before switching to Rifabutin.

I am on Rifabutin but not with Biaxin. I take it with Ceftin and minocycline.
I did take Biaxin with Rifampin for awhile though.
Posted 5/15/2019 5:53 PM (GMT 0)
Thank you for your replies I will suggest these drugs to my LLMD Dr. S in NJ. The last new bite (last year) I treated for 9 weeks with Doxy and was successful in getting rid of the symptoms.

This flare or new infection is kicking my butt right now, shaking, brain issues, jaw pain, headaches are all back today.

This illness is so insidious - right when I had weeks of feeling normal - back to the dark hole.

Jeanne
Posted 5/17/2019 1:12 AM (GMT 0)
If you can do leviquin it works better so I am told and the pubmed says so too.
Posted 5/17/2019 1:30 AM (GMT 0)
I am going to do rifampin or should I do Rifabutin which is easier on the body lol
Posted 5/17/2019 2:02 AM (GMT 0)

Donjr said...
If you can do leviquin it works better so I am told and the pubmed says so too.

Yes it’s effective for bart - but it’s a black box drug and many of us (including myself) choose not to take it -
(4 black box warnings)
Posted 5/17/2019 2:04 AM (GMT 0)

Donjr said...
I am going to do rifampin or should I do Rifabutin which is easier on the body lol

Rifabutin seems to be stronger than Rifampin.
My LLMD prescribes Rifabutin. I had treated for over a year with Rifampin and now I’m taking Rifabutin (after treating Babesia) and I’ve had my most severe herxing from it.
Posted 5/17/2019 7:23 PM (GMT 0)

Girlie said...

Donjr said...
I am going to do rifampin or should I do Rifabutin which is easier on the body lol

Rifabutin seems to be stronger than Rifampin.
My LLMD prescribes Rifabutin. I had treated for over a year with Rifampin and now I’m taking Rifabutin (after treating Babesia) and I’ve had my most severe herxing from it.


Was Rifabutin the one that gave you elevated labs? Or was that one of the daraprim/dapsone?
Posted 5/17/2019 9:22 PM (GMT 0)
Hey trekkar - I just posted in the other thread about this after reading your post.

Not Rifabutin - as I’m taking it now without the D and D and kidneys are fine.

It was one of the D’s

I see you’re only taking the daraprim - hopefully for you it’s the dapsone that was hard on my kidneys - or maybe it was unique to me...
Posted 7/15/2021 7:18 PM (GMT 0)
Dr. M is "the bart" expert without a doubt. Many of the LLMD consult with him for treatment guidance.

As many of you noted his preferred mix is Rifabutin with Biaxin (clarithromycin)... and he goes hard. I've seen doses as high as 450mg of Rifabutin 1PD in some patients. I've read that Rifabutin penetrates into the CNS better than Rifampin.
Posted 7/15/2021 7:24 PM (GMT 0)

BrianinPA said...
Dr. M is "the bart" expert without a doubt. Many of the LLMD consult with him for treatment guidance.

As many of you noted his preferred mix is Rifabutin with Biaxin (clarithromycin)... and he goes hard. I've seen doses as high as 450mg of Rifabutin 1PD in some patients. I've read that Rifabutin penetrates into the CNS better than Rifampin.

He had a very informational video about treating bart. - maybe I can find it. I can’t recall the doses. Was that 450 mg twice daily of Rifabutin - or Rifampin ?
Cuz 900 mg Rifabutin is ALOT.

He does start with Rifampin and then switches to Rifabutin.
Rifampin dose is higher than Rifabutin

I am taking Rifabutin -150 mg twice daily (with mino and ceftin )
Posted 7/19/2021 9:04 PM (GMT 0)
Rifabutin 150mg 2x a day was the starting dosing then he changed it to 450mg 1x per day after the patient plateaued. 450mg caused a lot of herxing and was able to get him clear of the Bart.

I’m going to be changing from a Zithromax / rifampin to Clathiromycin / Rifabutin based on the suggestion from Dr MR.
Posted 7/19/2021 9:06 PM (GMT 0)
I did Rifampin / Mino / Bactrim for almost 2 years and it got me 90% of the way but did not address persisters. So I’m going after them with everything now.
Posted 7/19/2021 10:35 PM (GMT 0)
I'm on Rifampin and Mino now, and it's been tough to build up the dose (Rif 300mg 1x day, Mino 100mg 1x day only every two or three days). I don't know what it is about this combo that seems to be hitting me hard. Maybe it's the right combo to hit my brain and nervous system.
Posted 7/20/2021 12:10 AM (GMT 0)
One thing I have learned is that once you plateau or reach a level of not progressing anymore you have to either change up meds or increase the dose of them. Those are the two ways of attacking the germ. I don’t think it develops resistance with multiple antibiotic combos but the persister forms remain.

Herx is a real good sign your on the right track.
✚ New Topic ✚ Reply