Bartonella sufferers might want to try Rifabutin

Interesting - thanks Rikky!

-p

I just was diagnosed with bartonella a few weeks ago. Currently on Amoxicillin and Biaxin and working toward adding in Bactrim DS. Wonder if I should ask my LLMD about this one instead of the Bactrim?

From what I've read/heard about treating Bartonella, people who haven't had it as long...may be able to get results with Bactrim.
But, if it's a longstanding infection, it won't usually be enough.

Maybe a good start to get some of the bacterial load down.

great to hear snarf good luck and keep everyone posted on your journey!

I read that Rifabutin cannot be take with Azitro. Which abx is it combined with?

>>Bactrim changed me ..but it may have hit something else ...is the rifabutin hard on liver too?

Bactrim being an old combo abx you probably dredged something else up. If we could only know beforehand what we let out of the cupboard!

Rifabutin is a newer antibiotic than Rifampin so less documented history but since its in the same family (rifamycin) its effects on the liver are at worst equal at best better.

jennydancingfish said...
How did bactrim change u ricky?

it was bluelyme that said that...and Ricky quoted him

it seems like you are on a pretty potent combination of antibiotics already - bart can just be a tough nut to crack

the plan to try 1200mg of rifampicin seems in line with Dr M's approach so no reason not to try that if you tolerate 900mg OK - i think he goes to 900 + 300 in the day to try to increase peak concentrations at some point also

other ideas -

you didn't mention fibrinolytic enzymes - especially for bartonella - eg lumbrokinase - which are a part of many newer protocols - is this already a part of the protocol you are on - if no it seems to be well worth investigating as bartonella is known to surround itself with fibrin that makes it hard for the immune system to access the infection and therefore hinders progress

biofilms are in general believed by most prominent LLMD's to be a significant part of this infection complex and so biofilm agents may be helpful inbreaking down the infections - there are many different potential agents -sugar alcohols like xylitol seem potent, lactoferrin, enzymes, some drugs also have antibiofilm effects

one of the other issues, compounded by how poor testing is to date, is knowing what other infections are present.
some LLMD's believe that what we call chronic lyme or bart etc are really multi-species infections in all patients that are chronically ill - and therefore although we might think of ourselves as only infected with lyme or bart or babesia - many like Dr J believe there are as many as 12 or more typically present in sick patients.
these may be infections we had already - but our immune systems were managing well, or picked up either from tick bites, the environment or the community, after we became ill.

the problem here becomes that while some are generally relatively easy to treat - the total infectious load suppresses the immune system - and the different groups require different antibiotics to treat them effectively. so by focussing on just one organism - say lyme or bartonella - we may miss others.

if bartonella focussed treatment is not working as expected - it might be a signal to consider approaches aimed at covering other infections - while perhaps still maintaining pressure on bartonella.

the three main groups seem to be
- lyme and other spirochetes (TBRF etc),
- bartonella and other small intracellular gram negative bacteria (rickettsia, Brucella etc ),
- Babesia and other apicomplexans ( toxoplasma, theileria etc )

it seems that by treating these we general cover enough of the common infections to reach remission

the other ideas that to my mind are as critical as the right drugs - is the health of the immune system.
although we think of antibiotics as drugs that kill bacteria - this is not actually the case for the majority of antibiotics
in reality most antibiotics we use are what's called bacteriostatic drugs - so rather than killing bacteria these drugs simply slow down the growth of bacteria.
this an important distinction as, if the drugs are not killing all of the bacteria, how are we to get better.

the answer is our immune system is doing most of the work - it still has to kill off and clean up all the slowed down, damaged or slow growing bacteria - antibiotics have just adjusted the balance more in the favour of immune system

so - this being the case - things that help the immune system respond properly can be just as important to overall recovery
- sleep - vital to immune function
- stress management - eg yoga or meditation or time in nature have al be shown to improve immune function
- exercise - very gentle at first - avoiding aerobic activity - strength exercises boost immune function

many LLMD's stress the importance of this aspect of treatment - but its often lost in the wider community as our culture is generally so biased towards pharmacological solutions - and we expect there is simply a drug or drug combination that can treat or cure us

Quin said...
1200 mg rifampin seems kinda high to me.

I found bartonella to be resistant to rifampin, and I had to switch to something else.

i thought that when i first read it - but it seems Dr M uses 1200mg per day routinely - he just works up to that over time
and he seems to have a fair amount of success

he reports only one of two cases that were resistant to it - but that most cases take 6montsh to a year of treatment with clarithro and rifampicin - with often no response or poor response in the first 6 months - so it just seems like bartonella is routinely difficult to treat - with slow response to abx.

I would also see what minocycline does for you before trying 1200 mg of Rifampin. A dosage that big could be too much.

Quin said...
I took clarithromycin and rifampin for 6 months and got nowhere. Took minocycline and immediately got a herx.

6 months with no improvement is too long.

i feel the same way - i jut find it interesting that the doctor best know for treating bart sees this pattern often - but the same drugs end up being effective when continued for longer - is something we don't fully understand about Bart is going on

one possible explanation could be that bart is just protected from the antibiotics to a large degree when its located inside endothelial cells ( intracellular antibiotics concentrations are known to be much much lower than plasma levels ) - so the long durations might be not because bartonella has become resistant to the antibiotic genetically - but because lot of them are effectively sheltered from them inside cells.

for a lot of people its a bit of a mute point anyway as we get so sick from killing too many at once that we have to go slow anyway.

Quin said...
I don't get it either. In vitro research shows bartonella easily becomes resistant to rifampin

https://pubmed.ncbi.nlm.nih.gov/27667026/

rifampicin is known to be relatively easy for bartonella and other bacteria to develop genetic resistance to - yes - but that's why its is pretty much always paired with another antibiotic - Dr M for instance always uses it with Clarithromycin.

they do this as its shown by the same kinds of trials to virtually eliminate the chances of bartonella producing genetic mutants that are resistant to 2 antibiotics at the same time.

Quin said...
I suspect "end up being effective when continued for longer" means you eventually try to treat another infection, and then somehow the bartonella goes away.

not sure - there are many people on the breaking down bartonella facebook group who treated with him and only used clarithromycin and rifampicin and got better - so they didnt target other infections intentionally - but its possible that those drugs were treating more than bartonella - but he didn't change it up to target something else as other LLMD's sometimes do

so it really does seem like - for a decent portion of the population with bart - the bacteria are not resistant to rifampicin at the start and do not become resistant during treatment - but are just slow to respond to abx treatment and yet that same treatment if maintained or increased is eventually effective.

this slow response just seems to be a theme in bartonella - not only with rifampicin - but with many different drug approaches - i did months of doxy, azithromycin and rifampicin and had only mild improvements - before stopping due to raised liver enzymes -
later i learned that this pattern is common in bart during treatment because the liver is infected - and the enzymes go high before clearing the infection and then come back down again - so it was actually a sign i was on the right track
so i think its more likely that this slow just a common feature of its pathology

something that is not much publicised is that rifampicin is also surprisingly effective for borrelia - and even borrelia persister cells - at least as effective as most 1st line borrelia drugs in some in vitro trials - so none of these treatments are really targeted to a single infection.
so it seems most people with problematic Bart - also have lyme and vice versa - certainly a quick survey of people on here would tend to agree with this

and i guess it kind of depends on what model we have in our heads of the nature of the disease - Dr M specialises in bart - and seems to be going at it as if its mainly a single infection with bart leading - while other LLMD's like Dr J believe its really always a multispecies infection with around 12 different infections in each host by the time they are very ill.

as you say - it could be that some people are able to recover if one main infection is targeted - and perhaps some overlapping infections are also reduced by antibiotics effects overlapping.