Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

It took my Dr over tons of tests for over two yrs, then I changed Drs to really great Mayo trained Internal med Dr and he fought insurance to be able to do a bronchoscope as I was finally coughing up blood . Results came back positive and had 60 days of IV Amikacin , Moxicycllin , daily with oral Clarithromycin twice daily and oral Ethambutol. I also, by that time needed monthly IVGG ( which I still get every six weeks) . During three years of misdiagnosising; everything tanked and many nodules developed . I tolerated the Ethambutol for a year but had optic nerve damage so my Eye Dr stopped it after MRI .I saw my eye Dr every two months while on Ethambutol . During the three years of suffering and finally getting a Dr to truly investigate, I yawned constantly , had to push into my lower left lobe just to get a breath and had chronic night sweats , and could only get a normal breath if I was totally flat . Extremely tired, severely depressed and lost all hope as when I went to ER they treated me like I just needed an inhaler and a psychiatrist. My CBC and other labs came back fine and I had no elevated temp. So , I know this is very long but I thank God every day for that Dr who saved me and I just want to share that if you do not have a Dr that can figure it out; keep searching and fighting for yourself with this silent destructive lung infection . I completed my antibiotic treatments in 2013 and I am doing fine now , still getting IVGG every six weeks , but just want to share my story to help others

It took my Dr over tons of tests for over two yrs, then I changed Drs to really great Mayo trained Internal med Dr and he fought insurance to be able to do a bronchoscope as I was finally coughing up blood . Results came back positive and had 60 days of IV Amikacin , Moxicycllin , daily with oral Clarithromycin twice daily and oral Ethambutol. I also, by that time needed monthly IVGG ( which I still get every six weeks) . During three years of misdiagnosising; everything tanked and many nodules developed . I tolerated the Ethambutol for a year but had optic nerve damage so my Eye Dr stopped it after MRI .I saw my eye Dr every two months while on Ethambutol . During the three years of suffering and finally getting a Dr to truly investigate, I yawned constantly , had to push into my lower left lobe just to get a breath and had chronic night sweats , and could only get a normal breath if I was totally flat . Extremely tired, severely depressed and lost all hope as when I went to ER they treated me like I just needed an inhaler and a psychiatrist. My CBC and other labs came back fine and I had no elevated temp. So , I know this is very long but I thank God every day for that Dr who saved me and I just want to share that if you do not have a Dr that can figure it out; keep searching and fighting for yourself with this silent destructive lung infection . I completed my antibiotic treatments in 2013 and I am doing fine now , still getting IVGG every six weeks , but just want to share my story to help others

how are you doing now? finished with the Big 3? Did they work? Are you cured?

Had to stop
No alternative recommrndedv

When I first get up in the morning, I take two pills of Rifampin with a glass of water, then wait an hour to eat my breakfast. At night with my dinner I take the Ethanbutol and azithromycin with my dinner. During the day I take a probiotic, Jarro Dophilus, 1 tab twice a day. I don’t have any tummy problems doing it this way. I have to take the meds every day. Over ten years ago, I took the same meds three times a week for about a year, but MAC came back recently. I wasn’t good at nebulizing the first time I had it. Now I nebulize 2xD.

If I could afford Mayo or NJC that's where I'd be !! But that's not the case .I have now four id Drs who are not treating me like a person but a disease only .Getting shuffled around from one to another and all they do is compare notes from last follow up ...nobody on the same page .Different Dr different protocol ,don't know who to trust anymore .
Didn't want to take the antibiotics but the weight loss I suffered is going to be my death not ntm .it's called cachexia .I'm down to 78 lbs ,Trying to put me now on antidepressant for the forth time and I can't take those .Weird is after I did research on this one it is not compatible with any other drugs I'm taking ,so I won't touch them ....I have no appetite on these antibiotics and am having a very hard time .I have or had no symptoms at all except weight loss and should have waited until I put on a few lbs more to start .I'm at a total loss at what to do ???😥

Hi Noname,
When you’re down to 78 pounds that’s a concerning situation. You should seriously consider having a consultation with Michelle MacDonald. She is the nutrition supervisor at NJH and also has a consulting business. I know many people who have gone to her and found it extremely helpful. If you are interested, I can give you her contact information.

Best,
Linda Esposito

Linda-
Do you have any new, the latest, studies with BE/MAC patients being on Azithromycin and Ethambutol only, no Rifampin.
I am wanting to make my decision to take the two, but would like to read and know as much as I can....... what the latest findings, studies are with the drugs. The only information I found was from 2017 and 2016 and it could be totally different by now?? Those NIH studies weren't showing the success we all we like to hear with taking the two. Of course, there were some success stories in the studies.
I have heard about the medication Arikayce and wonder if I should do all I can to get into a study and start just with the Arikayce, if that is how they do it...just Arikayce.
I have read many posts here, and as we know, with all different results. Most were on the 3 medications whereas Tyler said "not putting you on Rifampin." I trust that she had a good reason why not to put me on Rifampin, I forgot to ask why not.
Hope you are doing well.
Thanks,
Barbara