Just switched over from Rifampin to Rifabutin (mycobutin). Upcoming Treatment Strategy

Wowee. Def herxing from the rifabutin, all over body ache, lymph nodes behind/under ears are burning, deep fatigue. 3rd day on it. I am quite convinced bartonella (or blo) is my main driver of disease. It is incredibly tenacious, I've had it a long time, sometimes I just can't believe there is still infection left after all the treatments, it's surreal! But I always had this intuition that whatever health issue I was dealing with was going to be really hard to get rid of (this was even before I figured out I had lyme/coinfections), whatever I had I knew it was bad and entrenched. It just FELT that way... I don't know why I knew that but I just knew it.

I don't know much about rifabutin, anybody else taken it before?

It is a strong herx but it is manageable so far. Doing the usual detox methods to try and keep it in check. I think it will wane in the coming days/week.

Bart has been knocked down a lot but there is still a bit to go, my intuition is this last 10% is tricky to nail. Doc has suggested doing fluoroquinolones to try and knock down the rest but that's a really hard sell for me, I'd rather exhaust all other options because those drugs scare me. I can't quite convince myself to try them (and I have stomached some serious risks with other meds!), in a way it's tempting because of the possibility of knock-out blow to the bart which I am so beyond sick of, but at the same time I've never felt closer to the finish line and these drugs are a big risk imo, it would suck to get some permanent side effect or something from a medication just when I thought I was nearing the goal line, it would be the cruelest irony to have such a thing happen after fighting so hard for so long through this grueling journey to try and get better. To get zapped near the finish line would really destroy me psychologically. I don't have it in me to fight another whole new health battle, especially one I'd have trouble not considering being of my own creation/needless risk taking. I really don't.

Plus there's the added problem that even if I did decide to take the quinolones I think the psychological component, being so fixated on potential permanent side effects, would probably torment and drive me a bit crazy haha! I also have the problem that I generally have strong herxes, neuropathy being one of the symptoms, and it would be very hard to distinguish between herxing and problematic side effects from the drugs.

One thing that we will likely do is roll over from dapsone and start taking pyrazinamide. I can't find many lyme/coinfections patient experiences for this treatment. Entails some risk, but believe it or not I certainly feel more comfortable taking that risk than the quinolones! I don't know a lot about pyrazinamide so I still need to read up on it to better understand potential benefit/risk.

I have and continue to do many herbal protocols. Rifing seems to help as well. I think they are good adjunct therapies for me but not sure they can do all the heavy lifting on their own, hence my willingness to dig into the abx arsenal. Wish I could avoid all these meds, but as things stand I consider them the best options for me. A lot of these decisions are judgment calls, built on assumptions and best guesses. Like everyone else I do my best with the information at hand, knowledge from previous experience, and go with my intuition. Sure do wish it was a lot simpler, with more obvious choices and paths rather than all the murkiness that obfuscates clarity!

In a way we are all trailblazers on this frontier of medicine (but tbh I'd rather be out in the world doing old school trailblazing/exploration rather than this type, but that will never happen anyways because I'm too paranoid about ticks now lol!).

Post Edited (sebreg) : 5/12/2017 9:02:22 PM (GMT-6)

i did rifampin for about 4 months along with doxy then switched it out for biaxin. after a short break i did rifabutin with minocycline then added bactrim a month later.

i'd say the rifabutin is more effective than rifampin for me. i used to take the rifampin 2 300mg pills in the morning. i tried this with rifabutin one time for a few consecutive days (2 150mg pills) and boy was that a mistake!

the floroquinolones are definitely the most dangerous class of common abx out there. i have no problems with any abx except this class which gave me neuropathy and tendonitits. i would avoid them if you can.

Sebreg,
Thanks for posting what you are going through with Bartonella. Its helpful to have updates about other members treatments and experiences.

I'm cheering for you to make it to the 100 % mark. You can do it.

Take care, Jo

How long have you been on dapsone? I agree with you on quinolones. I'm not a risk taker.

I'm hoping you get that last 10% soon!

Thank you all so much, for your support, for your kind words, for your helpful advice and thoughts!

Pirouette: I have tried quite a few herbal protocols for bart but I haven't tried A-bart. That's one I should try out at some point. Thank you for sharing your floroquinolone experience. In a sense, I think I could be fine taking those meds, but the biggest problem that would bother me is not being able to distinguish my herxing from potential serious side effect...

Rikky1: Thanks so much for your input and advice! I was pretty surprised at how effective rifabutin seems, at least initially. Did you take the floroquinolone meds for a longwhile or short period?

Traveler: You are just the best, thank you for everything! and I couldn't agree with you more, best to stay open and see what can work. There are so many variables, every patient is different, and I can completely understand that patients also may have different approaches and treatment philosophies as well.

Goshawk: Thank you thank you thank you! the support and help I've gotten from this forum in mind-boggingly amazing and helpful. I try my best to share my experience and thought process, for one because it is helpful getting responses of support and advice from other members! but also because if other patients hadn't done the same I would never have been able to be as aware and informed to guide my treatment and care. One of the best avenues for me that has helped guide my strategy, helped me learn, is reading other patient experience stories.

PurrrsianKitty: Thank you for your support and kind words. It truly means a lot to have you all behind me. It's indescribable!

k07: Thanks so much! I've been on dapsone about 9 months now, so decent amount of time. Are you thinking of taking it in the near future, I seem to remember you were considering it no?

Girlie: Thank you so much as well Girlie! Well that's the thing with pyrazinimade, I think this is a very very new kind of trial effort by my doc. I've seen a few other patients have been on it but not many. I think it can play a role for lyme based on hitting persisters, but I'm hoping it will hit bart. Doc didn't really tell me which one we were specifically targeting with this drug, but I think given the fact that I'm at a bit of a plateau and that I tell him I suspect bart is most important in my case I'm guessing this could hopefully target the bart. I'll try and read up on it.

Currently taking dapsone with rifabutin. Dapsone has been a good drug for imo, probably reached diminishing return levels though. I went in for blood tests every 2-3 weeks to keep an eye on things, plus take leucovorin and folafy-er to try and head-off possible side effects regarding meth-hemoglobin.

PS. I just came across this thread, talks a little bit about pyrazinamide and bart. We are still at the experimental frontiers with this lol. Holds some promise though? I will def keep you all posted on how it goes either way with my case and experience. flash.lymenet.org/ubb/ultimatebb.php/topic/1/131481

Post Edited (sebreg) : 5/13/2017 7:15:38 AM (GMT-6)

Ah that's right! well these are certainly difficult judgment calls no doubt! I certainly prefer trying to exhaust less risky options before moving on to the riskier stuff. I haven't decided yet where I should or should not draw the line, I'm trending towards no on the quinolones but will keep on reading about it and reading up on patient experiences. I guess you can somewhat hedge with mag supplementation and maybe Vit c or something I can't remember exactly, but I have to imagine the major risks with those meds are still there no matter what.

I'm sorry to hear that, how long have you been on the bactrim now? I do appreciate that he rotates and is willing to improvise and work with each patient based on patient comfort/experience. No doc is perfect but I am happy to have his treatment, guidance, and help. I will keep you posted on the pyrazinamide. It's so tricky feeling relatively close to finishing this off, but really think I need to zap this infection as much as possible as hedge against recrudescence and potential long term effects of harboring lingering pathogen (which I consider an unknown factor but concerning), plus I do want to flush out these symptoms as well... given that, I do want to reduce the infection to embers, but I don't want to press the wrong nuclear button when it comes to abx!

In your estimation what have been the most effective treatments for you thus far? usually I've had some effective ones, like dapsone, azithromycin, alinia, quite a few herbals, but I usually hit a point of diminishing returns that then requires rotation to hit pathogens from a new angle...

Post Edited (sebreg) : 5/13/2017 12:33:04 PM (GMT-6)

Hi sebreg. So glad to see you near the finish line.
I took 2 doses of Levaquin and was seriously floxed. Horrendous cns symptoms. Imo, I wouldn't suggest any type of flouroquinolone for anyone. Google flouroquinolone forums for info and stories.

Patty