HealingWell
Search Close Search
☰

My Bartonella Treatment…. Freaks me out.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/15/2023 1:30 AM (GMT 0)
Hi everyone,
I won’t write the novel that I can but 1999-2006 I had a million weird symptoms (joint, muscle, neuro, respiratory) that all Yale doctors labeled “atypical fibromyalgia”. 4 Lyme tests were negative. My symptoms subsided and I was just left with poor memory and brain fog that I felt was my normal. Fast forward 2023…. I was tested (iGenex and Galaxy) and positive for Bartonella (4 strains).
I’m seeing a LLMD who I don’t have much opinion on besides he’s a bit wacky but he prescribed me the following:

PREscriptION :
Rifampin
Azithromycin
Methylene Blue (compound pharmacy)

SUPPLEMENTS:
NAC
Lauricidin

HERBS (that I was already taking and he said I can continue)
Houttuynia
JK
Cordyceps
Sida Acuta

Are these prescriptions common together? I’m just freaked out to take them all because I’m not one that takes many medications and these seem intense and can have some brutal side effects. I just dont know if this is a normal treatment for Bartonella?
Thanks in advance.
Posted 6/15/2023 3:08 AM (GMT 0)
I found bartonella to be resistant to azithromycin and rifampin. I also tried clarithromycin and it did nothing.

Azithromycin worked only when combined with atovaquone (which, at least theoretically, shuts down energy production in the cell, thus inhibiting the mechanism by which the bacteria remove the azithromycin).

Methylene blue I have not tried personally. If you do this, be aware of the side effects.

Cryptolepine (sida acuta, cryptolepis) I did get some pretty severe side effects from. If you want to try a nucleoside analogue, I found valacyclovir more tolerable, although I mainly used this against borrelia rather than bartonella.
Posted 6/15/2023 6:19 AM (GMT 0)
“ Rifampin
Azithromycin
Methylene Blue (compound pharmacy)“

Rifampin and Azithromycin is a common treatment for Bartonella/ Lyme. I was on Rifampin with my first Lyme doc - if I’m remembering correctly, it was paired with clarithromycin (same group as Azithromycin )
My second LLMD had me take Rifabutin instead of Rifampin - as he thought it was a better abx compared to Rifampin.
I never took the methylene blue but several members here have taken it - I don’t recall any problems with it.

Let us know how it goes.
Posted 6/15/2023 11:58 AM (GMT 0)
yep - what you are on is a pretty common combination

if you find all together from the start is too much in terms of reactions / die off symptoms - which is common

you can add them sequentially

i would tart with the abx first
Posted 6/15/2023 1:48 PM (GMT 0)

Garzie said...
yep - what you are on is a pretty common combination

if you find all together from the start is too much in terms of reactions / die off symptoms - which is common

you can add them sequentially

i would tart with the abx first

And just like that, I feel better. I’m so new to this all. I did read Buehners Bartonella book but it’s overwhelming to me and didnt address the combinations of abx. I’m just so scared to be on this and it doesn’t work. He explained that you can test in a few months and with Bartonella the numbers actually show if the load is decreasing so I’ll know from decrease of symptoms and the blood work, hope that’s true.
Thank you so much for your response
Posted 6/15/2023 2:01 PM (GMT 0)

Quin said...
I found bartonella to be resistant to azithromycin and rifampin. I also tried clarithromycin and it did nothing.

Azithromycin worked only when combined with atovaquone (which, at least theoretically, shuts down energy production in the cell, thus inhibiting the mechanism by which the bacteria remove the azithromycin).

Methylene blue I have not tried personally. If you do this, be aware of the side effects.

Cryptolepine (sida acuta, cryptolepis) I did get some pretty severe side effects from. If you want to try a nucleoside analogue, I found valacyclovir more tolerable, although I mainly used this against borrelia rather than bartonella.

Thank you for sharing. That’s what I’m concerned about. Taking and waiting to see if it works. I’ve heard about Methylene Blue being used but also sacred of it all.
I’ve been taking Sida Acuta and been fine along with other buehner herbs and no herx that I can tell….
Posted 6/15/2023 2:02 PM (GMT 0)
Rifampin and clarithromycin was the first thing my doctor prescribed... and it didn't work.

Bartonella was resistant to it, and the rifampin messed with my adrenals and stained my teeth.

If you want to use this, you'll need to knock out bartonella's efflux pumps so it can't just eject the clarithromycin. I found atovaquone works well, but I recall another forum member reporting success with juglone or black walnut.

Another option is to use an antibiotic that is harder for the bacteria to efflux, such as minocycline, which I also had success with. The problem that I had with minocycline was its anti-inflammatory effect which suppresses the immune response and makes viral infections worse, which led to me getting covid repeatedly (although I found that atovaquone is effective for treating covid).

I was successful in treating bartonella with this, but treating borrelia required entirely different meds.
Posted 6/15/2023 3:37 PM (GMT 0)

Quin said...
Rifampin and clarithromycin was the first thing my doctor prescribed... and it didn't work.

Bartonella was resistant to it, and the rifampin messed with my adrenals and stained my teeth.

If you want to use this, you'll need to knock out bartonella's efflux pumps so it can't just eject the clarithromycin. I found atovaquone works well, but I recall another forum member reporting success with juglone or black walnut.

Another option is to use an antibiotic that is harder for the bacteria to efflux, such as minocycline, which I also had success with. The problem that I had with minocycline was its anti-inflammatory effect which suppresses the immune response and makes viral infections worse, which led to me getting covid repeatedly (although I found that atovaquone is effective for treating covid).

I was successful in treating bartonella with this, but treating borrelia required entirely different meds.


Ugggggh how long until you know it is or isn’t effective? I don’t want to be on it forever and realize it was a waste. I know it’s all individual but is there a way to know it’s working?
Posted 6/15/2023 3:50 PM (GMT 0)
just bear in mind Quin's experiences, whilst valid and i am sure only offered to try to help, may not be typical of most Bartonellosis patients

many LLMDs have success treating with rifampicin and a macrolide antibiotic - so its a logical first choice option

adding MB and other adjuncts is a sensible step and should improve your chances

unfortunately, no once can tell in advance if you will be in the small % of patients that do not respond - and so it still makes sense to try the most often used / most often effective treatments - before trying more esoteric approaches.
Posted 6/15/2023 4:01 PM (GMT 0)

Garzie said...
just bear in mind Quin's experiences, whilst valid and i am sure only offered to try to help, may not be typical of most Bartonellosis patients

many LLMDs have success treating with rifampicin and a macrolide antibiotic - so its a logical first choice option

adding MB and other adjuncts is a sensible step and should improve your chances

unfortunately, no once can tell in advance if you will be in the small % of patients that do not respond - and so it still makes sense to try the most often used / most often effective treatments - before trying more esoteric approaches.


Thank you and yes I’m optimistic with this treatment as I need to remain positive. I’ve lived with this for 25 years, my symptoms thus far have been what I thought is normal life and I’m operational so any improvement would be great. I just hope I won’t be bouncing from drug to drug and I’ll know sooner vs later if it’s working. Do you have any suggestions on how long it takes to know if the medication is effective? I never asked him…
Posted 6/15/2023 4:11 PM (GMT 0)
opinions differ

some of Dr M's patients ( he is the most famous LLMD specialising in Bartonellosis treatment) are on this combination long term - up to 2 years - but they typically ramp up - first the macrolide to double dose - then the rifampicin

but in most cases the treatment can only go forward at a rate the patient can tolerate - as die off reactions can be very strong and limit the doses that can be taken - so its not a quick fix

in terms for what to expect - people experiences vary - but if you have been ill for many years with this - i think its reasonable to expect a fairly long treatment course - perhaps a year or more - but that's not to say things will not get better in that time

it may not be linear - a realistic trajectory might be - not much happening in the first week or so - then symptoms of die-off ramping up for a few weeks at a time - and perhaps some further waves of die -off reactions as regimen is adjusted - then improvements in steps after herx reactions - or just gradually over time

we all want to be better right away - but a focus solely on why this isn't happening - or when this will happen can become a big burden to carry - so try not to focus only on the end goal and be impatient for it to arrive - concentrate instead on doing what you can each day to make your health a little better (not just popping the pills - but getting good sleep, some mild exercise, good diet etc can help just as much as the antibiotics) - it is often a long term proposition - but with improvements along the way
Posted 6/15/2023 6:04 PM (GMT 0)

Ruly6117 said...
Ugggggh how long until you know it is or isn’t effective? I don’t want to be on it forever and realize it was a waste. I know it’s all individual but is there a way to know it’s working?

I took clarithromycin and rifampin for about 6 months, and seemed to have some mild improvement at first, but the bartonella just came back and I started getting rashes and nosebleeds. At the time I was new to this and just trusted my doctor. Turns out the doctor didn't know what he was doing either.

When I switched to minocycline, I got an immediate herx with a fever and dark urine, and it smelled bad, so I knew it was doing something. Later I discovered that the combination of atovaquone and azithromycin would cause a similar herx, whereas either alone did not.

Note that these antibiotics only kill the active form of the bacteria. Bartonella has a dormant state, and to attack that something like methylene blue is used. Be slightly careful when doing this, because some people have reported that certain drugs will disturb the dormant bartonella but not kill it, which just makes it become active and grow.
Posted 6/15/2023 11:01 PM (GMT 0)

Garzie said...
opinions differ

some of Dr M's patients ( he is the most famous LLMD specialising in Bartonellosis treatment) are on this combination long term - up to 2 years - but they typically ramp up - first the macrolide to double dose - then the rifampicin

but in most cases the treatment can only go forward at a rate the patient can tolerate - as die off reactions can be very strong and limit the doses that can be taken - so its not a quick fix

in terms for what to expect - people experiences vary - but if you have been ill for many years with this - i think its reasonable to expect a fairly long treatment course - perhaps a year or more - but that's not to say things will not get better in that time

it may not be linear - a realistic trajectory might be - not much happening in the first week or so - then symptoms of die-off ramping up for a few weeks at a time - and perhaps some further waves of die -off reactions as regimen is adjusted - then improvements in steps after herx reactions - or just gradually over time

we all want to be better right away - but a focus solely on why this isn't happening - or when this will happen can become a big burden to carry - so try not to focus only on the end goal and be impatient for it to arrive - concentrate instead on doing what you can each day to make your health a little better (not just popping the pills - but getting good sleep, some mild exercise, good diet etc can help just as much as the antibiotics) - it is often a long term proposition - but with improvements along the way

This is helpful since I wasn’t sure if a month was long or short expectation so knowing it can be a year makes me more prepared if it happens not to think there is something wrong with me. He never discussing ramping up meds. I’m just basically taking all 3 and doing blood work in 3 weeks I think to see that my liver is tolerating this and then continuing on…. I’m feeling hopeless that this can be cured after reading so many online stories. I wish I can read more successful stories to be optimistic. Your insight is incredibly helpful to me.
Posted 6/16/2023 3:27 PM (GMT 0)
try not to be too focussed on stories for hope and inspiration

each of our paths through this will be individual - with their own ups and downs - and stories are just anecdotes

a lot of people go through a lot of stress - looking for people with exactly the same symptoms as them in the hope that they just need to do what that person did - and they will get better
or
searching for other forms of certainty - like searching for the ideal best treatment plan that works well for everyone
or
for some very deterministic treatment course - that if they follow they will get the same predictable results

this is a natural responses to uncertainty to some degree - but each individuals response and therefore their treatment journey tends to be different with its own peaks and troughs along the way
some people have recovered after 2 weeks of antibiotics ( or probably even without antibiotics at all and didn't even know what they had )
others are still in treatment after years
unfortunately we cannot really know in advance which we will be

so instead just focus on the things we can control - like having a reasonable plan, then following that plan day by day
with a plan to review maybe once a month or every couple of months

and in the meantime doing the things that help your body regardless of the cause of illness - like sleep, diet, stress reduction etc as these all help the immune system - which in the end is the main thing that determines if we are in the quick recovery camp - or the longer term one - or somewhere in between.

stress reduction includes disengaging the brain from rumination on the unknowable uncertainties that it will of course be drawn to if we let it - especially with the excitotoxicity and brain inflammation involved in bartonella and other co infections - which tend to drive anxiety and depression - so its easy for this to become a kind endless search for certainty - which doesn't really exist - and isn't really helpful

in general - you will generally see more people telling stories of long term struggles with bartonella - as those that recover in short order just tend to get on with their lives - and are not so much on internet forums writing about it (this is just one of the reasons that anecdotes are not necessarily the best place to get your reference points from).

some additional bartonella related resources for you

this is the best primer on Bartonellosis in humans bar none -
its by the leading mainstream researcher in the field who has studied it for 40 years - and the leading clinician who specialises in treating it - so its a reliable source and well worth a watch

https://www.youtube.com/watch?v=njywmmpjiku
Posted 6/17/2023 1:44 AM (GMT 0)

Garzie said...
try not to be too focussed on stories for hope and inspiration

each of our paths through this will be individual - with their own ups and downs - and stories are just anecdotes

a lot of people go through a lot of stress - looking for people with exactly the same symptoms as them in the hope that they just need to do what that person did - and they will get better
or
searching for other forms of certainty - like searching for the ideal best treatment plan that works well for everyone
or
for some very deterministic treatment course - that if they follow they will get the same predictable results

this is a natural responses to uncertainty to some degree - but each individuals response and therefore their treatment journey tends to be different with its own peaks and troughs along the way
some people have recovered after 2 weeks of antibiotics ( or probably even without antibiotics at all and didn't even know what they had )
others are still in treatment after years
unfortunately we cannot really know in advance which we will be

so instead just focus on the things we can control - like having a reasonable plan, then following that plan day by day
with a plan to review maybe once a month or every couple of months

and in the meantime doing the things that help your body regardless of the cause of illness - like sleep, diet, stress reduction etc as these all help the immune system - which in the end is the main thing that determines if we are in the quick recovery camp - or the longer term one - or somewhere in between.

stress reduction includes disengaging the brain from rumination on the unknowable uncertainties that it will of course be drawn to if we let it - especially with the excitotoxicity and brain inflammation involved in bartonella and other co infections - which tend to drive anxiety and depression - so its easy for this to become a kind endless search for certainty - which doesn't really exist - and isn't really helpful

in general - you will generally see more people telling stories of long term struggles with bartonella - as those that recover in short order just tend to get on with their lives - and are not so much on internet forums writing about it (this is just one of the reasons that anecdotes are not necessarily the best place to get your reference points from).

some additional bartonella related resources for you

this is the best primer on Bartonellosis in humans bar none -
its by the leading mainstream researcher in the field who has studied it for 40 years - and the leading clinician who specialises in treating it - so its a reliable source and well worth a watch

https://www.youtube.com/watch?v=njywmmpjiku

I have to say thank you for all that you do and the time you take out of your day to educate people. You don’t know how much I appreciate this. I spoke about you at the dinner table today and we watched the video which was a wealth of knowledge. He uses Clarithromycin and I was prescribed azithromycin but also with rifampin.my doctor said I fry rifampin first but after this video he explains why to use the other first so I’ll switch my order around. Thank you so so much. You’re the best.
Posted 6/17/2023 4:19 AM (GMT 0)

Ruly6117 said...
This is helpful since I wasn’t sure if a month was long or short expectation so knowing it can be a year makes me more prepared if it happens not to think there is something wrong with me. He never discussing ramping up meds. I’m just basically taking all 3 and doing blood work in 3 weeks I think to see that my liver is tolerating this and then continuing on…. I’m feeling hopeless that this can be cured after reading so many online stories. I wish I can read more successful stories to be optimistic. Your insight is incredibly helpful to me.

It is possible to beat bartonella (and I did). However, it can be difficult. Bartonella is often resistant to multiple antibiotics, but there are ways around that. Once you do find a combination of drugs that will reliably kill it, a year or two of treatment is a realistic expectation. I found that most of the severe herxing was in the first few months, after that it would relapse occasionally and I would have to deal with that, but it wasn't as bad.

You're lucky if you only have bartonella, borrelia (Lyme) is much more difficult to eliminate.

As for clarithromycin vs azithromycin, I tried both, and found that bartonella was resistant to both unless combined with atovaquone. Clarithromycin has a shorter elimination half life, which can be a little easier on your stomach since it doesn't last as long. Clarithromycin also messed with my blood pressure a bit, which was a little annoying, so I mostly ended up using azithromycin and minocycline in the end.
Posted 6/17/2023 11:20 AM (GMT 0)

Quin said...

Ruly6117 said...
This is helpful since I wasn’t sure if a month was long or short expectation so knowing it can be a year makes me more prepared if it happens not to think there is something wrong with me. He never discussing ramping up meds. I’m just basically taking all 3 and doing blood work in 3 weeks I think to see that my liver is tolerating this and then continuing on…. I’m feeling hopeless that this can be cured after reading so many online stories. I wish I can read more successful stories to be optimistic. Your insight is incredibly helpful to me.

It is possible to beat bartonella (and I did). However, it can be difficult. Bartonella is often resistant to multiple antibiotics, but there are ways around that. Once you do find a combination of drugs that will reliably kill it, a year or two of treatment is a realistic expectation. I found that most of the severe herxing was in the first few months, after that it would relapse occasionally and I would have to deal with that, but it wasn't as bad.

You're lucky if you only have bartonella, borrelia (Lyme) is much more difficult to eliminate.

As for clarithromycin vs azithromycin, I tried both, and found that bartonella was resistant to both unless combined with atovaquone. Clarithromycin has a shorter elimination half life, which can be a little easier on your stomach since it doesn't last as long. Clarithromycin also messed with my blood pressure a bit, which was a little annoying, so I mostly ended up using azithromycin and minocycline in the end.


Great info and I noted atovaquone as a possible bs m up plan if this fails. I haven’t started my meds yet as I’m traveling this week and will take it after my 14 hour car ride. I’m scared I’ll feel awful and that would be miserable.
Thank you so much for being so informative. You all are great!
Posted 6/17/2023 1:26 PM (GMT 0)
Unfortunately this will cause diarrhea, and if you are successful in killing the bartonella, it will release debris (herxheimer reaction) which will cause even more diarrhea.

I wouldn't want to take a 14 hour car ride while taking antibiotics, unless I thought I could go the whole 14 hours without eating anything.
Posted 6/17/2023 2:45 PM (GMT 0)

Quin said...
Unfortunately this will cause diarrhea, and if you are successful in killing the bartonella, it will release debris (herxheimer reaction) which will cause even more diarrhea.

I wouldn't want to take a 14 hour car ride while taking antibiotics, unless I thought I could go the whole 14 hours without eating anything.


Exactly. Thank GOD I work at home so the side effects won’t be as bad as in public. Ugh.
Posted 6/17/2023 3:16 PM (GMT 0)

Ruly6117 said...


I have to say thank you for all that you do and the time you take out of your day to educate people. You don’t know how much I appreciate this. I spoke about you at the dinner table today and we watched the video which was a wealth of knowledge. He uses Clarithromycin and I was prescribed azithromycin but also with rifampin.my doctor said I fry rifampin first but after this video he explains why to use the other first so I’ll switch my order around. Thank you so so much. You’re the best.

Thank you very much for the kind words

i am happy to help

i know how hard this illness can be - and now that i am a little further forward in my recovery - i would like to be able to help others find their way through this journey a little easier

azithromycin and clarithromycin are sister drugs from the same group ( macrolide antibiotics)

they work by the same mechanism on the same bacterial species

the main difference is in their pharmacodynamics - one of them tends to reach higher concentrations in the blood - and the other higher concentrations in tissues - each of which can be useful.

as quin mentioned azithromycin has a long half life of something like 2 days giving some flexibility in dosing regimes - whereas clarithromycin is just a few hours and needs to be taken more regularly

clarithromycin also has more powerful drug interactions - so please do check these if you are taking any other medications

we are also all different in terms of how our bodies process the drugs - some people attain higher concentrations than others and some people have a better response to one rather than the other.

so, overall one may not be any better than the other in any individual case - that said there does seem to be a slight preference to using clarithromycin for bartonella amongst some LLMD's

all the best!!
Posted 6/18/2023 12:10 PM (GMT 0)

Garzie said...

Ruly6117 said...


I have to say thank you for all that you do and the time you take out of your day to educate people. You don’t know how much I appreciate this. I spoke about you at the dinner table today and we watched the video which was a wealth of knowledge. He uses Clarithromycin and I was prescribed azithromycin but also with rifampin.my doctor said I fry rifampin first but after this video he explains why to use the other first so I’ll switch my order around. Thank you so so much. You’re the best.

Thank you very much for the kind words

i am happy to help

i know how hard this illness can be - and now that i am a little further forward in my recovery - i would like to be able to help others find their way through this journey a little easier

azithromycin and clarithromycin are sister drugs from the same group ( macrolide antibiotics)

they work by the same mechanism on the same bacterial species

the main difference is in their pharmacodynamics - one of them tends to reach higher concentrations in the blood - and the other higher concentrations in tissues - each of which can be useful.

as quin mentioned azithromycin has a long half life of something like 2 days giving some flexibility in dosing regimes - whereas clarithromycin is just a few hours and needs to be taken more regularly

clarithromycin also has more powerful drug interactions - so please do check these if you are taking any other medications

we are also all different in terms of how our bodies process the drugs - some people attain higher concentrations than others and some people have a better response to one rather than the other.

so, overall one may not be any better than the other in any individual case - that said there does seem to be a slight preference to using clarithromycin for bartonella amongst some LLMD's

all the best!!

As usual so useful and helpful. I feel like after seeing Dr M use clarithro that I want to use his method but don’t feel comfortable telling this doctor. I’m already changing his order of drugs. He told me to take Rifampin first and then Azithro but this recommendation was opposite by Dr M so that’s what I’ll do… At least they are in the salt family so I’m close to the similar protocol.. I dont know.
✚ New Topic ✚ Reply