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Rifabutin questions

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Posted 5/30/2020 1:25 AM (GMT 0)
Hoping some of you can offer some suggestions as far as adjusting/easing into rifabutin. It has been rough! My daughter has done a year of rifampin with either doxy or minocycline and has improved quite a bit but still has a lot of lingering bartonella symptoms. Her dr recently switched her to rifabutin. He said to start with 1 pill (150mg) a day and increase in a few weeks to 2 a day. She actually noted some improvements the first week but by day 8 she got hit with a horrendous herx with a lot of nerve pain, POTS symptoms etc... it was as if we were starting all over. We pushed through for 11 days but things were getting too intense so I stopped. She’s been off of it for three days and is better but not back to where she was. I’m scared to death to start it again! But she clearly still has a major bartonella infection that her current meds are no longer managing. Does anyone have any suggestion as to how to get through the switch to rifabutin? Thank you!
Posted 5/30/2020 2:23 AM (GMT 0)
Well as you’ve prob read a few times - Rifabutin hit me hard - and I had also done a long run with Rifampin.
I only took Rifabutin six days a month and it was more than enough. M/W/F week 1 and M/T/W week 2 followed by two weeks off.
Even after several cycles on it - it was hitting me hard.
A few cycles I ended up postponing the second week a few days.

I wonder if dose of abx is just too high - I take the same dose as a 200 lb man - I weigh in at 135 lbs .
Dose of abx for children goes by weight - why not for adults too?
If your daughter doesn’t weigh a lot maybe 150 twice daily will be too much - especially taking daily.

I think taking a day off here and there may be necessary for her.
Posted 5/30/2020 2:29 AM (GMT 0)
Thanks Girlie. Yes I remember reading you saying it was rough.
I agree and am thinking I may need to pulse it. I’m concerned though, I know dr J pulses meds but since he hits extra hard on treatment days, patients can take those breaks without the infections popping back up in between doses. My daughter is on minocycline and zyth daily but is that enough to hold down the Bart while breaking from rifabutin? I’m not sure...
This evening is the third day off of it and she seems to be regressing now. The brief reprieve off of treatment hasn’t lasted and I don’t know how long I can go with out her feeling worse without rifampin or rifabutin. I feel like I’m rambling. Hope that makes sense.
Posted 5/30/2020 2:54 AM (GMT 0)
I edited my post - not realizing you had already read it .
(Wondering about her weight and the dosage)

So she takes mino, zith plus Rifabutin daily?

That is a lot/enough -I don’t think taking a few days break of the Rifabutin would cause resistance - but it’s best to discuss with the LLMD
With the two weeks off (aka dr J) I doubt the Bartonella is kept totally at bay in my case.
It might be a good thing - stop abx and the bacteria comes out of hiding and then you hit it again.
My maintenance protocol is basically Rifabutin, mino and Ceftin
M/W/F plus Flagyl on Th/F for one week - then 3 weeks off.
Posted 5/30/2020 2:57 AM (GMT 0)
Ok yes thanks Girlie. I’ve put a call in to the dr. What I meant to say though is that after three days off the rifabutin, she improved at first but now feels she is declining without either the rifampin or rifabutin.
Posted 5/30/2020 3:10 AM (GMT 0)

Upatnite said...
Ok yes thanks Girlie. I’ve put a call in to the dr. What I meant to say though is that after three days off the rifabutin, she improved at first but now feels she is declining without either the rifampin or rifabutin.

Lol - I edited my last post too.

It’s so hard to explain things in the written word ...
I think if she herxes hard - she needs to take a few days off.
I also think it’s too soon to know what’s really happening - there can still be ups and downs no matter what.

See what the Doc says - will you give us an update - I’m curious and would like to know what he says.
Posted 5/30/2020 3:50 AM (GMT 0)
Good evening to you two. Hearing about this discussion vs bartonella, and hearing about having to still hit it 1 week a month;
Girlie; do you know what Dr J mean by maintenance protocol?
Is that a protocol to be taken forever to keep the bugs at bay?
I would assume so.
I’d personally love to have a way to transition to herbal at some point down the road...
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