Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

I don't understand why more research hasn't been done to kill this bacteria since it isn't so rare anymore !!!! Drs don't seem to care about the person it's affecting but are only treating a disease .My four Infectious disease Drs couldn't care less about my weight ,appetite or me as a human just about the disease .I'm at the end of my rope with pill after pill making me feel worse than ever !! They really should have waited for me to try to put some weight back on as I will die of cachexia not ntm !!!.

Has anyone ever skipped a dose of anzithromicin to make it through the day to not feel sick for an appointment or to get something done .Like just forgetting a dose for a day ??? I'm only on 125 mg in the morning two ethanbutol at night .both aren't great but no problems taking the night dosage just the morning pill .I need to get to my Dr appointment and don't want to be sick it's an hours drive !!

Thanks for your response. i will have to ask my Dr about Zofran. i have been lucky with the Azithromycin and Rifampin (on now for almost 2 years) but the Ethambutol I had to go off for eye problems, Then they put me on Arikayce for 8 months and the cough was terrible they took me off that as well. That's when they added Nuzyra. Hope with time the effects will get better.

My experience with azithromycin, ethambutol and rifampin was not good. Azithromycin caused hearing loss after 2 months of taking it. My ophthalmologist warned me that ethambutol could affect my vision.
My experience with clofazamine as a substitute was also bad, because it caused intestinal blockage.
I am not on any treatment now; only nebulizer for air clearance.
The antibiotics were not tolerable for me.

I agree. It is hard to believe that no treatment can be found that doesn’t make you sicker than the disease itself .
Perhaps there is not enough incentive for it since it mostly is appearing in the elderly .

I was told many times that it's in our water system here in Florida ,years ago they used a substance in the system to kill another bacteria that was affecting many ,but they never put anything in for ntm bacteria which is now very prominent not only in Florida but Texas Hawaii and now other farming states .Our wonder government when was offered money by the President refused to take it to clear up our system !!! Talk about caring for your people !! In this country only the rich can stay healthy !! .Unless you can get to NJC or somewhere that specializes in ntm your stuck with whatever you can get !! It's very sad !! 😂

I completely agree with you. For a disease that is up and coming in the elderly and those younger I would hope more drs would become knowledgeable in the disease and drugs would become more plentiful and cheaper.

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

Couldn't you go on three times a week by yourself? The doctors know a great deal, but are also sorting all of these things out, and there is not perfect equation often.

Mokie

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