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Need advice on Rifampin and Bartonella

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Posted 1/30/2019 12:29 AM (GMT 0)
Hi everyone,

I've been searching this forum obsessively for a while and finally made an account. I need advice on where to go from here. I am getting very frustrated with treating Bartonella lately. I've been on Cefdinir and Rifampin for nearly 7 weeks now. 2 weeks in I started to feel very good (nearly 75%) but it only lasted for about 2 1/2 weeks.

I started to crash the middle of this month. Lately I have been getting extremely depressed, having anxiety attacks, along with my usual symptoms (mostly neuro). I am hoping I am just herxing but I'm not sure. I haven't gone after Bart like this before and I have no clue if it will end. What's your experience been like? How many weeks did you stick it out before you started to see good improvements?

Post Edited (1029384756) : 9/5/2019 11:31:28 AM (GMT-6)

Posted 1/30/2019 12:59 AM (GMT 0)
Unfortunately, my experience with rifampin was that it didn't do anything except make my piss orange and stain my teeth. The bartonella infection was completely resistant to it. Some people have reported success treating bartonella with rifampin, but it did not work at all for me.

I eventually found that the bartonella was susceptible to minocycline, and this made me herx bad. I've been taking it for a month and I am still herxing. If you felt better in 2 weeks and then relapsed, that suggests that what you were taking didn't really work. Bartonella has a tendency to go into remission and then relapse. It will do that without antibiotics.
Posted 1/30/2019 1:16 AM (GMT 0)
Welcome to the forum sanelson92!

I found rifabutin to be more effective than rifampin, although rifampin can work well for quite a few people. And like Quin, I found minocycline to be even more effective. Sometimes it depends on what particular infections and strains you are dealing with, often times it's hard to know exactly and there might be other occult infections in play that respond to those medicines.

One possible idea would be taking a break from the meds and seeing if you stabilize. If you do, at least you'd know that you were likely experiencing a herx with the meds and that they were having some effect.
Posted 1/30/2019 1:33 AM (GMT 0)

Quin said...
If you felt better in 2 weeks and then relapsed, that suggests that what you were taking didn't really work. Bartonella has a tendency to go into remission and then relapse. It will do that without antibiotics.

Yeah this is exactly what I've been worried about. When the bottle is out I'll go to my doc and see if he can switch things up again. I wanted to try and see this through, hoping that I was just clearing the stuff out... But I don't want to waste time on an ineffective abx. I've been on Cefdinir for a long time too (7 months I think). It might be time to switch that one out anyway.
Posted 1/30/2019 1:44 AM (GMT 0)
When I started taking minocycline, I got a Herxheimer reaction almost immediately. 7 months without improvement is way too long. You've likely got antibiotic-resistant bartonella.
Posted 1/30/2019 1:52 AM (GMT 0)
Sorry, I'm kinda omitting a lot here. I was about 90% better a few months ago, but shortly after I stopped the antibiotics (clindamycin and Cefdinir) I relapsed.

When I went back on the same stuff I plataeued so I convinced him to try Rifampin in December. I did have a pretty serious herx reaction to it I believe, after which a lot of my symptoms cleared for a few weeks.

I've now been on Cefdinir with Rifampin for 7 *weeks*. Some of my symptoms are flaring up again (headaches, fog) and some new stuff (emotional issues). The only thing that has improved is the joint and shin bone pain for what it's worth.

Thanks for listening dude.

Post Edited (sanelson92) : 1/29/2019 7:00:17 PM (GMT-7)

Posted 1/30/2019 2:02 AM (GMT 0)
Bartonella has a tendency to go into remission and then relapse. I thought it was totally gone, but then it came back.
Posted 1/30/2019 2:03 AM (GMT 0)
Welcome to our community!

You could switch to minocycline with the Rifampin - or do mino plus Rifabutin.

It could be that the flaring of symptoms plus new ones are due a herx ? And not a relapse.
Posted 1/30/2019 2:13 AM (GMT 0)

Girlie said...
Welcome to our community!

You could switch to minocycline with the Rifampin - or do mino plus Rifabutin.

It could be that the flaring of symptoms plus new ones are due a herx ? And not a relapse.

Yeah that's what I'm hoping it is. I'm just unfamiliar with having a short burst of improvement then another dip. This summer I improved dramatically in one month and things kept looking up. I'm slowly learning how to deal with the ups and downs I guess.

I'm wondering if this will break or not... Only time can tell I guess. It definitely doesn't feel like I'm spiralling out of control like it did with my first relapse. I'm very interested in getting on a better protocol for this anyway - I'll see what he thinks.
Posted 2/1/2019 10:39 PM (GMT 0)
I had a similar experience with Rifampin. It worked REALLY well...for a few months. I was on it from July-September. Joint pain went away, depression was much better. But then my body crashed. I don't know what happened, but all symptoms came back. We later tried a few others with no real success. I went back on Rifampin several months later, and it seemed to have less of an effect. I guess the bugs just got used to it in my case. But, I did really like the initial symptom relief I got with it. I hope you can figure something out. I still haven't gotten a handle on Bart. I don't know where to go from here.
Posted 2/2/2019 12:32 AM (GMT 0)

MA10 said...
I had a similar experience with Rifampin. It worked REALLY well...for a few months. I was on it from July-September. Joint pain went away, depression was much better. But then my body crashed. I don't know what happened, but all symptoms came back. We later tried a few others with no real success. I went back on Rifampin several months later, and it seemed to have less of an effect. I guess the bugs just got used to it in my case. But, I did really like the initial symptom relief I got with it. I hope you can figure something out. I still haven't gotten a handle on Bart. I don't know where to go from here.

Were you just on rifampin? If so...that may be why. Two abx should always be given...not mono therapy...one reason is to prevent resistence.
Posted 2/2/2019 12:35 AM (GMT 0)

sanelson92 said...
Sorry, I'm kinda omitting a lot here. I was about 90% better a few months ago, but shortly after I stopped the antibiotics (clindamycin and Cefdinir) I relapsed.

When I went back on the same stuff I plataeued so I convinced him to try Rifampin in December. I did have a pretty serious herx reaction to it I believe, after which a lot of my symptoms cleared for a few weeks.

I've now been on Cefdinir with Rifampin for 7 *weeks*. Some of my symptoms are flaring up again (headaches, fog) and some new stuff (emotional issues). The only thing that has improved is the joint and shin bone pain for what it's worth.

Thanks for listening dude.



7 weeks isn't very long. During my treatment of bart...symptoms went away slowly...and every now and then one would show up for a few days again...and then disappear.

Also..you could be dealing with Babesia...which will need different treatment.
Posted 2/2/2019 1:17 AM (GMT 0)
Thanks for the help everyone. Today and yesterday have been a bit better. I tend to get extremely anxious whenever I don't feel well. I'll try to see this through for a bit longer to see what kind of progress I can make. How long does it take to consider a treatment "failure" in your opinion? 3 months, more?

Regarding babesia, I'm not sure I have it. Other than the headaches and anxiety issues my symptoms don't line up as far as I know. Definitely worth looking into, though.
Posted 2/2/2019 1:25 AM (GMT 0)

sanelson92 said...
Thanks for the help everyone. Today and yesterday have been a bit better. I tend to get extremely anxious whenever I don't feel well. I'll try to see this through for a bit longer to see what kind of progress I can make. How long does it take to consider a treatment "failure" in your opinion? 3 months, more?

Regarding babesia, I'm not sure I have it. Other than the headaches and anxiety issues my symptoms don't line up as far as I know. Definitely worth looking into, though.

I don't know how long to wait...I guess 3 months without any improvement...would be a fair trial. But I think mine went longer before I dropped any symptoms.
I had to use a symptom list...because even though I eliminated many...I still didn't 'feel' better because the ones remaining are my worst...and really can't function well with them...

Sometimes we have a symptom go ...but we don't realize...because it may not be one we're focussing on.

Some people have no obvious signs of Babesia...but it can still be there and it may hold back your bart treatment.
The LLMD I see treats babesia first...as he says it gets in the way of further treatment.

I believe my anxiety was babesia related. I don't/didn't get headaches.
Posted 2/2/2019 1:32 AM (GMT 0)
My doc claims the anxiety and depression can be tied to Bart as well. Who knows? I'll definitely look into Babesia. Good advice. Thanks so much!
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