Methylene Blue for Bartonella

Thanks! Appreciate the updates too.

Rifabutin hit me hard too - and that was after I had previously treated bart with Rifampin for a long time - I think 2 years
I had one really really bad herx on it.
But the Rifabutin herxes did get less severe as time went on.

Maybe down the road you can try Rifabutin again without the MB (if the Rifampin doesn’t help anymore)

Just to be clear I was also taking dapsone and Daraprim with the Rifabutin (plus two more abx)

I had a high fever - came on late afternoon after my week of meds.
Then it got higher and my arms started jerking.
My heart was racing - pulse over 100 bpm.
Then my head was sore to touch
I also felt nausea.

I almost went to the ER - it was that bad.

By the next morning (didn’t sleep a wink ) my arms weren’t jerking anymore and my temperature went down a bit by the next afternoon but still a fever.
I think by that evening (next day) my temp was back to normal.
The nausea continued all day - hubby went out for ginger ale - and I could stomach that. Couldn’t eat anything. Been drinking it ever since.

Hopefully it is short lived for you too!

The next day after that I was pretty good (if I’m remembering correctly)

So two bad days

Will you keep posting updates?

“ In my experience, it seems that Rifabutin is harder to tolerate than Rifampin. Maybe deeper penetration.“

I agree - seems to be ‘stronger’

JMF84 - yes it certainly could have been a terrible herx from the Rifabutin and MB combined. Even when I stopped the MB and continued on the Rifabutin I felt a little better and then worse again and developed the fever. Dr. MR advised me that Rifabutin can cause an autoimmune type response where the immune system attacks all of the cells where the drug is located.... which could have been what happened. I have a lot of muscle pain and stiffness still. My fever has stopped and I finally was able to sleep last night (thank god).

Its very, very hard to know if it was a herx or a adverse drug reaction. I've been sweating through my sheets every single night..... sigh.

Girlie - my primary LLMD advised me to stop the Rifabutin and go back on Mino / Rifampin / Bactrim - which I tolerated well but didn't clear my CNS bart symtoms, eyes or ears. It seems as if the Bart is deep inside the smallest hardest to reach blood vessels in my body (my eyes, ears and brain). I would love to know if anyone has discovered something that is effective to clear out those areas.

Bailey - my general theory is that the MB stripped away a lot of the biofilms over the course of 8 days which then exposed the germ to the biaxin and rifabutin (neither of which I have taken before) and KABOOOOM. Was way too much way to fast all at once.

Game plan moving forward is to get myself back to my starting point..... as every single system in my body is in chaos.

One thing I am super curious about and would love to hear all of your feedback on.... do you think the biofilm colonies formed by Bartonella are what makes it difficult to treat or is it the meds we are using do not penetrate the BB barrier and get to it. I kinda think its a combination of both but what do you all think?

I saw a Lyme literate neuro opthamologist, granted it was virtual during the beginning of pandemic. He suspects I have a csf leak. My llmd is obsessed with biofilm breaking. I’m not so sure biofilm is the issue for me though because sure I break and and I get really sick then have to mop everything up with abx. But I never improve no matter how much biofilm I break and mop stuff up. Sure Each time I use something specific to break my biofilm, successive uses don’t make me as sick as the first time, but there’s never been an overall improvement in my health.

I have always felt that I have some other infection that’s getting dumped out of my biofilm that the abx are not treating well. Because everyone just usually looks at me funny when I say I can take abx with a biofilm breaker but then I have to keep taking the abx without the biofilm disruptor for a while otherwise I’ll be in a state of relapse where I keep getting worse till I take more abx. So either there’s some other infection getting dumped out of biofilm not being treated or the abx I’m taking are not strong enough to handle the bartonella Lyme and babesia being dumped out.

Post Edited (Bailey) : 8/12/2021 12:35:43 PM (GMT-6)

i think the problem with treating bartonella is mainly
1, its ability to form persister cells - which are resistant to all normal bart antibiotics - only certain antibiotic combinations work for them - and they need to be in adequate concentrations - we dont yet have any really good research to show what that concentration in the tissues needs to be - and what oral dose that translates into - but my guess is its hard to get optimum concentrations into all the tissues. in addition there is research showing wide individual variations in blood and tissue concentrations of various antibiotics - and this is likely to be a part of the picture explaining why some abx seem to work for some and not others.

2, biofilms - bart does form these - and so it must be a part of the picture - but i think all effective antibiotics are those which anyway start to break down bart biofilms - so i'm guessing its more the persister issue that is at work

3, potentially - actual antibiotic resistance - this does happen in the lab in forced experiments - but i think the presence in humans is overstated - unless perhaps the strain was already resistant to one or more antibiotic before you became infected - eg from exposure to antibiotics in its previous host - eg pets or farm animals. it is also theoretically possible for it to become resistant to an antibiotic if it were treated with a single antibiotic for a long time in a patient - but when you look at how many cycles they need to perform of forced growth and repeated exposure in the lab - it shows it does not happen quickly in natural settings - so again i think its likely less of a problem in the real world.

BrianinPA said...
Girlie - what does Dr. J say about treating persistent Bartonella? I’ve seen his interviews where he indicates that Babesia is the linch pin to these infections.

He takes care of Babesia first - he believes it has to be out of the way.

For me - Bartonella seemed to be the dominant infection. (Likely had a smouldering bart infection since childhood - many cat bites and scratches plus a few health anomalies growing up.)
He treats bart hard and aggressive,
The protocols are hard to tolerate,

My herx from hell was while treating bart.

I started with Dr J in early 2018 and finished the protocols by spring of 2019
Been on maintenance since then - taking abx 4 days per month
( one week on and three weeks off)
But I have been stretching the off weeks lately and he said that was fine.
No relapse on the off weeks.

I think I stretched the off weeks to 7 or 8 weeks once with no long-standing symptoms returning,

"One thing I am super curious about and would love to hear all of your feedback on.... do you think the biofilm colonies formed by Bartonella are what makes it difficult to treat or is it the meds we are using do not penetrate the BB barrier and get to it. I kinda think its a combination of both but what do you all think?"

I would think some of both, and Garzie added some good points. Bailey too about ABX and biofilms. Some people have taken very high doses of Rifabutin (gradually building up) which could perhaps work as well as PZA or MB. That is just surmising.

For me, I don't know whether my Bart is just deep or hidden by biofilms or if Babs and Lyme are getting in the way of better response to treatment. Treating Babs seems to bring my Bart out which is then quite severe, and it seems like I just have to go back to treating Bart. I'm hoping to address both at once now and see if I have better improvement.

I'm glad you've had some improvement, BrianinPA, and hope it continues.

Thanks for mentioning that. I'll keep it in mind.