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Bart herx or med side effect?

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Posted 11/27/2024 12:10 PM (GMT -5)
Over the summer I was pulsing rifabutin. about two weeks in I got severe heavy pins and needles all over my body. Stomach/chest, legs, arms, neck etc. Literally everywhere. As well as very warm skin sensations on my neck, ears, face etc. I have daily temps of 99.1 for the past year. During the summer when I flared up I had a 101.7 temp. I just checked my temp now to see and sure enough over 100 again. My worst symptoms are my actual nerves. Permanent fasculations, numbesss, weakness, tremors etc. Followed by serious bladder issues with losing the urge/sensation to go last year. My vision is shot. Very heavy neurological. Every time I've taken rifampin for awhile I don't get anything like this. I remembered this happening the last time I was on rifabutin so decided to try it again. I'm on daily antibiotics now instead of pulsing. I'm guessing this is a herx from the rifabutin? What are your thoughts? A little background on my igenix testing...was indeterminate for bartonella henslae.


I'm basically treating myself through doctors just to get the meds. Nobody ever told me to try rifabutin. Only rifampin. I'm throwing in a really harsh antibiotic soon called dapsone as well that I brought up with her once I get my labs back. She agreed to start me slow on it bc protocols for it are extremely high doses. It tanks your hemoglobin. I've had to do all the research on my own for two years to get to trying these different meds. Have to be your own doctor these days 😔 (They are very smart ilad trained LLMD's.) Trial and error I suppose through this maze.
Posted 11/27/2024 12:48 PM (GMT -5)
Hi Eric

it could be herx or a drug reaction of some kind - most likely herx i think

rifabutin is in the same family as rifampicin - but pharmacokinetics are different and peoples experience of it often differs -
most seem to feel rifabutin is stronger so that could explain why a person might have more herx symptoms with one than the other - or different ones

by the way - its best not to use rifampicin or rifabutin as monotherapies ( single antibiotics) - as its been demonstrated that its relatively easy for microbes to develop resistance to them with a single mutation - whereas most other antibiotics require more than that - so its best to use it in combination - both for efficacy and for peace of mind.

i hope its of some help

all the best
Posted 11/27/2024 12:53 PM (GMT -5)
Thanks for the reply. I'm taking it along side azithromycin as well.
Posted 11/27/2024 2:46 PM (GMT -5)
Hi Eric,
I have tried dapsone protocol in a similiar way you are intending and I have developed anemia every time I was on 200mg (double dose). It is definitely better with an LLMD, but I think it is somehow doable by oneself, if there is not other option, but it is important to take all antidotes (5MTHF, leucovorin, MB) and go for regular tests, as Dr. H recommends. It is a strong medication, with harsh side effects - I was not able to distinguish herx from dapsone side effects. In any case I think it is worth trying, do to possible potential benefits. Unfortunately for me most symptoms relapsed after stopping the protocol. Best wishes, B
Posted 11/27/2024 6:07 PM (GMT -5)
I am under a well trained LLMD. She did some blood work first to see if I'm able to go on it. She doesn't even want me starting at double dose. Wants me starting low. I know Dr. H treats his bartonella patients with high dose.
Posted 11/28/2024 6:13 AM (GMT -5)
Starting on standard dose is a good idea.

I dont think its wise for anyone to start on double dose.

Last time i looked into it Horowitz writes that he uses double dose only where people fail single dose and only higher doses on people who failed double dose.

In other words its a graduated approach - starting at the lowest doses first.

This approach is to optimise the risk vs benefit equation.

In his book he wrote that a good proportion of his chronic patients got well even on single dapsone dosing - using it combined with several standard lyme antibiotics.

He also outlines all the safety labs he uses throughout the protocol.

If doing via another llmd - ie not through him or the few he had trained in dapsone protocols - esp at the higher doses, i would want to follow these safety labs and supporting meds in full.

So it if you haven't done so already, it would be a good idea to read his papers and books to understand the full protocol. And defo make sure your llmd has - as Its quite involved.

Hope its of some help.
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