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Methylene Blue for Bartonella

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Posted 8/13/2021 7:20 AM (GMT 0)
“ I got to 90% better and my tests all came back negative (not a great Bart test) and when I stopped the meds I relapsed within hours. That’s when I started trying some new things.“

Maybe that’s why dr J hits bart hard
- there was a mix of several Pharma in my Bart/Persisters protocol.

Rifabutin, dapsone, Daraprim, Ceftin. , mino, Tinidazole, Clindamycin and Alinia. (Not all in same week)
Posted 8/14/2021 8:50 PM (GMT 0)
Just wanted to post a quick follow up to my original MB post. I’ve been off of MB for 5 days and Rifabutin for 4 days. I can’t say for certain which one gave me the trouble I had but the info I received from Dr MR indicated I may have had an adverse reaction to Rifabutin. It was pretty scary and I felt like I was dying. Hard to know if it was a herx or an auto immune type response to the drug. One or both of the drugs resulted in toxicity to my cns. I’ve had a lot of big time cns issues since I stopped using them. I am hoping that this will go away in a week or two. I am feeling somewhat better but I did push myself to the edge and have no desire to go back.

If you plan on trying either of these drugs I think you should know the risks involved up front and then proceed very very cautiously.
Posted 8/15/2021 1:36 PM (GMT 0)
Not sure what's going on with me but as I recover from the MB / Rifabutin melt down I went back on my original protocol of Mino / Rifampin / Bactrim and I had a BIG bartonella rash appear on my back. I also got my lab work back from my latest blood draw and my WBC and Platelets when into the toilet. My body was not able to to handle Rifabutin at all.

Feels as thought the germ may have used the opportunity to come out of hiding while I was weakened.
Posted 8/15/2021 3:07 PM (GMT 0)
i have heard some here say that bart often flares when its treated - but not hard enough to kill it outright - but it is so hard to figure out what is going on and i sympathise as its just so darn confusing for so many of us long haulers - ultimately if you cant tolerate rifabutin then you have to come off it so that a done deal.

in a funny way the bart rash is a positive - in that at least you know what you are dealing with - i have lots of bart like symptoms - but also lyme like symptoms - and maybe babesia but not the hallmark bart streaks rash - except one tiny faint possible one on my back a year or so ago - so its really hard to know what i'm dealing with

if the methylene blue is suspect for you - oil of oregano - especially liposomal forms - is thought to be equally good persister bart agent - so there are more options
Posted 8/15/2021 6:11 PM (GMT 0)
Garzie - I hear you. It can be maddening trying to figure out what you have. I had em all. Didn’t even know I had Babesia until my fish testing came back positive. I wasn’t really able to make much progress on my Bart symptoms until I really treated Babesia. As I cleared each infection the symptom picture changed and some did not return (Lyme for me was crushing fatigue).
Posted 8/15/2021 10:41 PM (GMT 0)
Did you try the Rifabutin without the MB?
Posted 8/15/2021 11:09 PM (GMT 0)
Hmm Garzie I have some oil of oregano, maybe I should try it again.

Last time I tried it, it gave me some anxiety, so I've been a bit hesitant.
Posted 8/15/2021 11:29 PM (GMT 0)

Girlie said...
Did you try the Rifabutin without the MB?

Yes I did. We think that I had an auto immune type reaction to it as I had a fever and very sore muscles and joints. It took a few days for the fever to go away and my muscles are still sore from it.
Posted 8/16/2021 12:29 AM (GMT 0)
Are you sure it's an autoimmune type reaction? Seems like many people get a fever and very sore muscles and joints from rifabutin. Dr M told me it penetrates tissues 50X better than rifampin and thus often induces very strong herxheimer reactions. I have never tried it personally, but almost everyone I talked to said its a very intense drug in terms of herxing.
Posted 8/16/2021 7:13 AM (GMT 0)
I’m also wondering if it was a herx.
You have Bart and you took a med known to treat Bart and those symptoms erupted.
When I was on the persisters protocol - which included Rifabutin and mino and ceftin which I’d been taking for a long time )
Plus dapsone and Daraprim , I had a really bad herx It was either my first or second cycle and I had a high fever, and my head hurt - my arms were jerking (scarey) and my body hurt all over.

I think that what happened to you could have been a herx.

Dr M treated a forum member that I was in contact with via email.
The first several months he had a lot of trouble at first - I would have to check my email to see what his symptoms were. I think he ended up in the hospital once.

But over time it lessened and he ended up in remission.
I think it took over 3 years
Posted 8/16/2021 9:44 AM (GMT 0)
It’s very possible that it was a herx especially since I took the Rifabutin with MB at the same time. Really pushed some buttons that had never been pushed before. I am still feeling some after effects a week later especially to my cns. I was close to going to the ER as well.

I’d like to hear about the other forum member Dr. M treated.
Posted 8/16/2021 9:47 AM (GMT 0)
One other thing I should mention is my WBC and Platelet counts went into the toilet. I haven’t talked to my primary LLMD yet about it but I doubt very highly he would have me proceed on Rifabutin with my counts so low.
Posted 8/16/2021 9:59 AM (GMT 0)
i have had wild CBC results when taken during a strong herx - i suspect these are transient and bounce back pretty quick once the herx is over

MB hit me noticeably even at 25mg a day - and then again each time i stepped it up by 25mg a day - manageable - but obviously slowing me down - causing fatigue and odd pains all over - took me 4months to get to 125mg a day.

adding 100mg a day straight off the bat would have been intolerable - and i am already 50% recovered - doing that with another strong persister drug at the same time would have hit very hard indeed
Posted 8/16/2021 10:54 AM (GMT 0)
Garzie thanks for the feedback. Yeah I think the doctor who suggested this protocol should have warned me about stepping the doses up. It was very weird because for the first 8-9 days I felt fine on the protocol and then boom it crushed me.
Posted 8/16/2021 11:26 AM (GMT 0)
Does Dr. M still see patients? When I looked on his website it looks like he will consult with doctors only.
Posted 8/16/2021 11:31 AM (GMT 0)
Does Dr. M still see patients? When I looked on his website it looks like he will consult with doctors only.
Posted 8/16/2021 1:46 PM (GMT 0)
BrianinPA, I saw where someone commented that Dr. M is not taking new patients, but I haven't 100% confirmed it.
Posted 8/17/2021 12:55 AM (GMT 0)

BrianinPA said...
It’s very possible that it was a herx especially since I took the Rifabutin with MB at the same time. Really pushed some buttons that had never been pushed before. I am still feeling some after effects a week later especially to my cns. I was close to going to the ER as well.


I’d like to hear about the other forum member Dr. M treated.

I’m trying to remember his forum name because I’m pretty sure he came back here to post.

I also emailed with him for awhile.
Posted 8/17/2021 1:03 AM (GMT 0)
It was Jackie Moon
Posted 8/17/2021 1:09 AM (GMT 0)
Here's his profile if you want to contact him:

https://www.healingwell.com/community/profile.aspx?f=30&m=3645417&p=196588
Posted 8/17/2021 1:09 AM (GMT 0)
He posted a year later.

https://www.healingwell.com/community/default.aspx?f=30&m=4127235
Posted 8/17/2021 10:51 AM (GMT 0)
Thanks for posting that Girlie. Wow talk about a journey. This all makes sense now why I got hit so hard by the MB and Rifabutin. Didn’t work my way up to either of them. I’m going back to Rifampin for the time being to stabilize myself. I definitely did some damage to my cns and my brain. Feels like all my neurotransmitters were wiped out.
Posted 8/17/2021 11:23 AM (GMT 0)

JaSon2233 said...
Are you sure it's an autoimmune type reaction? Seems like many people get a fever and very sore muscles and joints from rifabutin. Dr M told me it penetrates tissues 50X better than rifampin and thus often induces very strong herxheimer reactions. I have never tried it personally, but almost everyone I talked to said its a very intense drug in terms of herxing.

Nope - I'm not positive. It may well have been a mother herx - felt like I was dying to be honest. Never experienced anything like that before in my 3 years treating. I have gone back to Rifampin to stabilize myself and then will go from there. Ever since that big herx I have been soaking through my pillow sheet every night in drenching sweat - feels like the body was trying to get rid of the toxins.
Posted 8/17/2021 7:35 PM (GMT 0)
My plan is to go back to Rifampin 300mg 2x a day to stabilize myself. Then work up from there. Ultimate goal would be 600mg 2x a day at some point…. Then maybe try the Rifabutin again wo MB.
Posted 8/17/2021 11:29 PM (GMT 0)
I'm on 600mg Rifampin 1x day right now and eventually may build up to 600mg 2x day and then proceed to Rifabutin, but I think I should hit some Babesia before I go any higher with Rifampin. Hope you get stabilized and can work up more.
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