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@rbl

I don’t want to influence or discourage you in any way, your docs will advise you and doing your research is a good idea. I didn’t have this forum when I began or options 20 months ago. I started off with the wrong docs for me and my treatment was a bit messed up. I also have dyssutonomia so my body reacts differently to things. I originally started on daily treatment azithromycin, ethambutol, rifabitin, started 2 weeks apart. I got horrible flu like symptoms from rifabutin. After attempting it 2 times with same reaction, I was switched to levafloxacin, then went off that after 4 months due to tingly toes and achy joints. After 2 months of daily meds I went to 3 times a week. I had 7 sputum tests during that time and all were negative until my last one. I was only on azithromycin and ethambutol the last 8 months. My current doc wants 2 more sputum samples and we are waiting to see if I have symptoms the next 3 months. In hindsight, I regained weight plus extra, cough went away, and no more night sweats so I’m not upset I went on meds, just hoping I had a false positive. I just stopped meds one week before I got the news, I’m just trying to get my stomach healthy again and enjoy no meds as long as I’m able. I’m doing airway clearance and trying to eat well. My recent CT showed no change from 8 months ago so that’s good. One suggestion if you go on meds is to get hearing and eye eval first, I have a bit hearing loss and tinnitus but not sure if it was before meds since my hearing eval was 8 months after meds started. Good luck and hopefully you’ll be fine no matter what you choose.

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Replies to "I don’t want to influence or discourage you in any way, your docs will advise you..."

Thanks so much for sharing your journey & prayers for a “false positive”!! My ID Dr did order a eye, hearing & EKG as well prior to starting treatment for baseline on eyes & ears but I also have AFib which I take a Beta Blocker ( Carvedilol) for controlling heart rate. I’ve been told that the meds for AFib don’t play well w the antibiotics used for MAC…so that’s an added concern. Please keep us abreast of any updates…best of luck & thanks again!!

Wow…this is very helpful…I was on all 3 until the Rifabutin also caused TERRIBLE flu like symptoms. The pulmonary doctor took me off all 3, so now I am not taking any meds and waiting for an appointment for a consultation with an ID doctor…I have been waiting months!! It is good to hear that the 2 other meds seem to have worked without the rifabutin.