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Bartonella and Rifabutin

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Posted 1/30/2023 10:14 AM (GMT -5)
Hi everyone, I've been reading a lot on here recently, and it's been such a huge help. What an amazing community!

My story started in Nov 2020 with COVID. Totally got over it no problem, then a month later just had the worst anxiety and cognitive disruption imaginable. That, tied with some pretty horrible visual symptoms left me and my doctors just totally clueless.... Everyone was inclined to blame long covid, but my symptoms and severity didn't really fit. So fast forward and I end up finding an LLMD. I have 6 lyme IgG bands positive so we at least know that I had some prior exposure. Due to the severity of my cognitive and visual problems, we suspect bartonella may be my worst offender. We also suspect babesia, so we do some rounds of coartem and mepron before starting rifabutin+mino. The babesia meds seemed to move me forward.

So, here's where I am today. I am able to tolerate 150mg rifabutin daily, but any time I go up to 300mg, I will have the most biblical herx that has me wishing for death. Fever of 102-103, severe neck pain in the area that sounds "crunchy" when I move my neck, resting pulse of 120, fast breathing, and severe body aches. The herx almost always comes on at night, around 8 pm. Strangely, I always improve after these herxes until I relapse again because I always pause abx.

I've recently fired my LLMD, and I'm wondering, what are others doing? Are we supposed to power through or stop? Should I switch over to a fluconazole for a few weeks or some other drug to drop the load? I did try rifampin, but I never herxed like I do with rifabutin. Rifabutin takes it to a whole new level.

Thanks so much!
Posted 1/30/2023 12:52 PM (GMT -5)

traxxer said...
Hi everyone, I've been reading a lot on here recently, and it's been such a huge help. What an amazing community!

My story started in Nov 2020 with COVID. Totally got over it no problem, then a month later just had the worst anxiety and cognitive disruption imaginable. That, tied with some pretty horrible visual symptoms left me and my doctors just totally clueless.... Everyone was inclined to blame long covid, but my symptoms and severity didn't really fit. So fast forward and I end up finding an LLMD. I have 6 lyme IgG bands positive so we at least know that I had some prior exposure. Due to the severity of my cognitive and visual problems, we suspect bartonella may be my worst offender. We also suspect babesia, so we do some rounds of coartem and mepron before starting rifabutin+mino. The babesia meds seemed to move me forward.

So, here's where I am today. I am able to tolerate 150mg rifabutin daily, but any time I go up to 300mg, I will have the most biblical herx that has me wishing for death. Fever of 102-103, severe neck pain in the area that sounds "crunchy" when I move my neck, resting pulse of 120, fast breathing, and severe body aches. The herx almost always comes on at night, around 8 pm. Strangely, I always improve after these herxes until I relapse again because I always pause abx.

I've recently fired my LLMD, and I'm wondering, what are others doing? Are we supposed to power through or stop? Should I switch over to a fluconazole for a few weeks or some other drug to drop the load? I did try rifampin, but I never herxed like I do with rifabutin. Rifabutin takes it to a whole new level.

Thanks so much!

Welcome to the forum!


You could take the mino daily and take the Rifabutin maybe three days a week.

Or… find another LLMD to guide your treatment.
Posted 1/30/2023 12:57 PM (GMT -5)
Hi Girlie! Sorry I didn't include my full abx stack... that would probably help!
- Rifabutin 150mg daily
- Minocycline 100mg AM
- Biaxin 250mg PM

I have also tried - bactrim DS, fluconazole, tindamax, flagyl, daraprim, omnicef, malarone, coartem, mepron, and some buhner herbs recommended for babs/bart.

I don't herx at all when I take rifabutin daily. It's only when I add that second one in with the first one at the same time.
Posted 1/30/2023 1:26 PM (GMT -5)
hello and welcome to the forum

many LLMDs who treat bart do so with a staged approach - ramping up the doses as tolerated

often they start with rifampicin + 1 or more other abx - then transition to rifabutin + 1 other

from what you described what seems to be happening is pretty much as expected

in fact it sounds to me like you could well be on the right track - as getting bart to respond at all is challenging for many - and if you find something that is working - as in you herx then feel better afterward - these are exactly the signs that you are on the right track that you would be looking for.

for many of us tolerating the treatment is difficult - even when on the right track

as Girlie suggests - you may just need to more gradually ramp up the dose
you can do this by taking the extra dose of rifabutin every second day or every 3rd day to begin with.

if after some weeks - or more probably more likely some months - you find you cannot get to the full dose
then it may point to something else blocking treatment progress

one option that is often overlooked in Bartonella and babesia is the role of fibrin and the need for fibrinolytics to help break it down as it harbours infected cells and prevents the immune system from clearing them up

or it could be that Babesia is present and has not been dealt with sufficiently - as it has been reported that this can cause ongoing herx rather than progress - when treating the other infections

welcome to the forum - and to the fight against Lyme et al

feel free to ask questions - we are a helpful bunch
Posted 1/30/2023 1:57 PM (GMT -5)
“ I don't herx at all when I take rifabutin daily. It's only when I add that second one in with the first one at the same time.“

As Garzie mentioned - you could slowly ramp up to taking 2 Rifabutins daily.

Rifabutin was hard on me too.
The herxes I had were severe/brutal.
In fact I herxed so bad that my husband came very close to taking me to the ER.
He also stayed home from work to watch over me the next day.
Posted 1/30/2023 3:23 PM (GMT -5)
Biaxin (clarithromycin) increases the blood levels of rifabutin significantly. There's actually a drug interaction listed between them for this reason. That is not to say that you can't take them together, but it might explain why you feel the way you do.

Please read:

[...] 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. This bidirectional interaction is consistent with rifabutin's cumulative inducing effect over time on the CYP450 enzymatic pathway as well as clarithromycin's immediate inhibiting effect on the pathway.
Posted 1/30/2023 6:57 PM (GMT -5)
I have taken many different antibiotics many different times. Rifabutin was the only one that gave me a fever. It's a listed side effect of Rifabutin. The fever stopped when I stopped Rifabutin. I wouldn't assume that the fever is a herx.
Posted 1/30/2023 10:02 PM (GMT -5)
“ The fever stopped when I stopped Rifabutin. I wouldn't assume that the fever is a herx.“

I took Rifabutin for many months - but only got the fever once along with other herxing symptoms.
For me the fever was from the herx.
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