Confused how to treat bartonella :(

I feel alone right now and don't know what to do when it comes to treating bartonella. My llmd lives in another country and because of that it isn't easily booked an appointment. When first starting treating bartonella he recommended antabus because he thought that it was effective against all bbb's. However I took antabus for a really long time but I felt that it didn't do anything against bart, instead I feel thay I might have gotten worse (as so many also experience). After that I started pyrazinamide + azithromycin which were very effective and I got a lot better but had to stop pyrazinamide due to really high liver enzymes. I tried it twice but my liver enzymes quickly got all too high the second time and I had to stop again. Now it doesn't seem that it is totally clear what to try next... he says I can try antabus again (which I am not superinterested in because I didn't feel it did anything for my bartonella) or I can try azithro + rifampicin but because of all the interactions against prescription meds he says that he usually want to add Rifampicin last to the bart-treatment. I also am taking mirtazapin that gets less effective from Rifampicin and I am worried about that because bart-herx gives me a lot of anxiety and I don't know how I will handle also anxiety from withdrawal from mirtazapine. My llmd says I can increase the dose of mirta but that it is impossible to know how much.

I don't know what to do about bartonella . Right now I am treating bartonella with azithro + houttuynia + quassia + started cryptolepis a week ago. Since starting cryptolepis and increased houttuynia I really struggle with exploding bartsymptoms (herx I presume), among others strong anxiety and that makes it also more hard to decide how I would like to proceed.

My questions:
1. How have you been treating bartonella? What meds/herbs have your llmd been recommended and in what order?

2. Is there any treatment that can be added to azithro before adding rifampicin? This to treat bart and maybe get a bit less anxiety from bartherx when starting Rifampicin and with that maybe more possible to also handle anxiety from withdrawal from mirta.

3. Is it most common to start bart-treatment with azithro + pyrazinamide and what do they that gets, like me, high liver enzymes from it, do to treat bartonella?

Or should I maybe continue the herbs for a while until not herxing on them anymore... and then add rifampicin??? I do get strong bartherx from the herbs but at the same time thoughts circle in my head that a lot of people claim herbs isn't enough and that makes me confused what is the right path right now .

I really appreciate your thoughts!

Garzie said...
how high were your liver enzymes ?

i ask because the bart guru LLMD dr M states that he sees this after a while in most of his bart patients - and he keeps patients on the abx if it doesn't go super high - and it resolves - believes its due to the drugs killing Bart in granulomas in the liver and is part of the healing process.


i had raised liver enzymes - approx. 2x upper limit of normal - and stopped abx due to liver concerns - before learning the above

if it happened again i think i would increase the liver function test frequency to each 2 weeks - keep the abx going - and add things to help support the liver -
some that LLMD's use to help bring down liver enzymes and protect the liver are
-milk thistle extract
-NAC
-glutathione
-sulforathane

My llmd accepts 3x the upper limit and mine got above that... I took liver test every week and the second time on pyrazinamide they increased really quick.

Did you restart your abx treatment after your liver enzymes had decreased and if yes, haven't they gotten high again?

I don't know why but for some reason I really do bad on glutathione... Sulforaphane however I have at home... I will start that!

Post Edited (MariaS74) : 9/4/2022 6:18:28 AM (GMT-7)

WalkingbyFaith said...
TUDCA is proven to reduce liver enzymes.

Yes I have tried TUDCA but for the period I tried it I only tolerated small doses because I got an reaction from it... increase in burning feet/legs and more restless... I couldn't tell if it was affecting bartonella somehow or if it was a detox-reaction... do you know if it initially can give a reaction somehow?

@Quinn

1. "I've found that bartonella easily resists azithromycin unless I take atovaquone with it. If you can't get atovaquone, then perhaps you could try another efflux pump inhibitor, but otherwise this is a losing battle as the bartonella will just become more resistant to azithromycin."

-->> Yes I am severly stressed about bartonella getting resistance against azithro... I guess it might already happened because I have been taking it together with the herbs houttuynia and quassia and also malarone (atovaquone/proguanil) for quite some time. This definately makes me really anxious but I don't know what to do because I don't feel I get so much help from my dr!!!

How did you find out that atovaquone prevented bartonella becoming resistant to azithro? I would like to talk to my dr about that but need to understand why. Is it enough taking malarone that contains atovaquone?


2. "Cryptolepis caused me anxiety and fatigue. I really suspect this is a side effect of the cryptolepis or borrelia die off rather than a bart herx. Bartonella die off caused me GI upset, rash, fever, dark urine (due to hemolysis) and had a really distinctive smell."

--->>> I also get a lot of anxiety from cryptolepis and at the same time a lot of burning feet and legs and rage and that is why I have thought it to be bartherx. This new study also says crypto is effective against both growing and non-growing bartonella... but it really is so hard to feel sure about what is happening in the body!
https://journals.lww.com/imd/fulltext/2021/09000/botanical_medicines_with_activity_against.7.aspx?fbclid=IwAR0mUksLVM2tUX7lrbLvTJSkI8gET42JCIURyf74JNjj0TlV4ZyETZ3oyus


3. "Is there some reason you can not take disulfiram plus minocycline? Bartonella usually isn't resistant to minocycline."
---->>> Is it enough to take minocycline against bartonella? Or does disulfiram help somehow with mino?

Post Edited (MariaS74) : 9/4/2022 9:27:49 AM (GMT-7)

I initially tried treating bartonella with clarithromycin and rifampin. It just didn't work. Azithromycin didn't work either. When I took minocycline, suddenly I got a herx. So I continued with minocycline. That plus valproate completely got rid of my bart symptoms for about a year, but it eventually came back. I don't know if it just relapsed or I got re-infected because I did have some exposure to cats.

When the bart symptoms started coming back, I was taking azithromycin and atovaquone for covid and unexpectedly I got a bart herx. Clarithromycin also caused a herx. This was very surprising, as it had not worked before. I eventually realized it was the atovaquone.

Why this works is fairly obvious if you understand the mechanism of action of atovaquone. Atovaquone inhibits the cytochrome bc1 complex which is used to produce ATP by pushing protons across the cell membrane. Disrupting this not only interferes with ATP production, but also prevents the bacteria from pushing other things across the cell membrane, so it cannot just eject the azithromycin like it normally does.

Are you taking malarone now?

Malarone also contains proguanil, an antifolate. You could also try other antifolates like dapsone or trimethoprim/sulfamethoxazole as these are often reported to be effective against batronella, but if you do this you should probably get blood tests to check your folic acid levels and take extra folate if necessary. I found that low folate caused anxiety and fatigue similar to the problem I had with cryptolepis.

The bart herx that I got was not just some anxiety, the die off was much more obvious. I got painful diarrhea and it smelled bad.

Disulfiram can help with bartonella as it gets the dormant bacteria to come out, but this is only helpful if you are taking antibiotics that can kill it. I also took valproate which does the same thing, but if you are taking disulfiram then you shouldn't need to take valproate.

Quin said...

...
The bart herx that I got was not just some anxiety, the die off was much more obvious. I got painful diarrhea and it smelled bad.
..
Disulfiram can help with bartonella as it gets the dormant bacteria to come out, but this is only helpful if you are taking antibiotics that can kill it. I also took valproate which does the same thing, but if you are taking disulfiram then you shouldn't need to take valproate.

I also get a lot of other symptoms when I feel I am having bartonellaherx. After starting cryptolepis some days ago I am having strong anxiety/panick attacks, burning feet/legs, restlessness, brainfog, headache in the body, sometimes irregular heartbeats too but not always. Rage too!!! Rage, panick attacks and burning feet/legs definately has increased a lot since adding crypto. But I do wonder if this means it is a bartherx or not...


* "When I took minocycline, suddenly I got a herx. So I continued with minocycline. That plus valproate completely got rid of my bart symptoms for about a year, but it eventually came back."

--->> Did you only take minocycline in the beginning for bart and it helped? Is Valproat commonly used in Bartonella treatment. I am asking because I would like to know if it is probable that my Dr knows this because it would be much easier to talk to him about it then...?

I did take mino for a long time before knowing I had bartonella. Is it likely that bart is resistant against mino also then?

* "Disulfiram can help with bartonella as it gets the dormant bacteria to come out, but this is only helpful if you are taking antibiotics that can kill it. I also took valproate which does the same thing, but if you are taking disulfiram then you shouldn't need to take valproate."

--->>> Is it enough to combine disulfiram with for example azithro to treat bartonella or does that still has a great risk for resistance against azithro?



* "Why this works is fairly obvious if you understand the mechanism of action of atovaquone. Atovaquone inhibits the cytochrome bc1 complex which is used to produce ATP by pushing protons across the cell membrane. Disrupting this not only interferes with ATP production, but also prevents the bacteria from pushing other things across the cell membrane, so it cannot just eject the azithromycin like it normally does.

Are you taking malarone now?"

--->>> Yes I am taking malarone now and have been taking it for a long time. Does that lessens the risk for my bartonella to have become resistant to azithro do you think? Is it common knowledge among llmd's that atovaquone has that effect on the bartonella resistance? I would really like to be able to discuss that with my Dr!

--->> The last time you treated bartonella, was it enough to only use azithro + atovaqoune or did you alse add valproat?

MariaS74 said...
I guess my Dr unfortunately only will listen to what he knows is commonly used against bartonella.

That's not a bad thing. There is no evidence Valproate does anything to fight these two infections.

Quin said...
Valproate is not commonly used for bartonella, but there are some published articles about using it to treat toxoplasmosis, if you want to discuss those studies with your doctor. I took it because I found that it worked similar to disulfiram but, for me, had less side effects. If you are doing okay with disulfiram then I don't know why you would switch.

I don't know how commonly malarone is used for bartonella, but it's something that people here have reported success with.

I would be cautious combining disulfiram with azithromycin, or anything that bartonella is resistant to because the disulfiram will make the bartonella more active and if the azithromycin then fails to kill it, you will just make things worse.

My general recommendation is first find something that will kill the bartonella, then try driving out the dormant bacteria with disulfiram.

If you can kill the bartonella with cryptolepis then maybe that would work, but it seems like that is giving you too many side effects? There are other options like methylene blue or gallium nitrate, maybe you can search for posts about people's experiences with that. Also antifolates (bactrim, dapsone).

I don't know if my reaction is a side effect... I would more feel like it is a bartherx (but how do I know for sure... I don't know)... so I guess I will try crypto + houtt + quassia for some time and see how it workes...

I read good things about methylene blue but unfortunately I am taking antidepressants and I guess that is not good to combine...

If people have reported success with using malarone against bartonella I at least can hope that malarone + azithro + the herbs have made it less risk of resistance

For what it is worth I can second Quinn’s experience herxing on valproate. I took it for a month or so. I recall searching for posts on valproate hitting infections and Quinn’s posts came up.

A delayed thank you Quinn, for reporting your experience and lending credence to what I also experienced.

Hi MarieS74, I wasn’t taking anything else at the time so it was easy for me to discern that it was causing a herx. I remember my amazement when I found Quinn’s report.based on our experiences, I have every confidence that valproate does in fact have antimicrobial activity against Borrelia and Bartonella.

i
I could not stay on the valproate as I ran into complications when given very poor advice to combine it with another CNS medication.

Quin: “ I don't know how commonly malarone is used for bartonella, but it's something that people here have reported success with.“

Malarone for Babesia - not Bartonella - not that I’ve heard of??

Racer86 said...
Cryptolepis is broadly effective against Lyme bacteria, but I think it's generally less effective than Sida for Bart and Buhner speculated Alchornea would be very effective due to being strongly antibacterial against similar organisms. Crypto tends to work better against gram positive bacteria (as do most antimicrobial compounds, natural or pharmaceutical), while Alchornea tends to be particularly strong against gram negative microbes. Bart is gram negative. Don't know if this info helps, but switching Crypto with Sida might work better since the Sida will also help protect red blood cells -- or you could use a CSA tincture which has all 3 of the above herbs.

Thank you for your thoughts! I find it hard to understand how effective cryptolepis is for bart... some say it hits it hard and some say it hits i less. In this article that isn't too old they said crypto was highly effective against now-growing bartonella but also effective against growing phase: https://www.biorxiv.org/content/10.1101/2020.08.19.256768v1.full?fbclid=IwAR3JZl8w3OD7XyHRD08q9ZeVL3d7wpODs44zRsx0PfwAAO2lHMJ5N7JB0HU

Does alchornea have a strong action against bart? Maybe I should try that instead. I thought it was less effective but I don't know what made me believe that..

Garzie said...

• Mahonia root bark 1:5 70% tincture 2.1 (a berberine containing herb)

Hey Garzie,

Just wanted to give you a quick warning because I know you have gut issues. Berberine gave me terrible constipation (which is extremely rare for me), turns out that it's known to do that and other gut issues:

"The main side effects are related to digestion, and there are some reports of cramping, diarrhea, flatulence, constipation and stomach pain (10)."

https://www.healthline.com/nutrition/berberine-powerful-supplement

It resolved when I stopped taking berberine.