Recently diagnosed with MAC and nervous about meds

Posted by gee12 @gee12, Mar 8, 2024

I’m recently diagnosed with MAC. I also have COPD, AFib and ongoing intestinal issues after surgery for a ruptured bowel. The side effects of the big 3 sound overwhelming to me. Most of them are problems that I already deal with on a daily basis. I’m 78 years old and have pretty much decided not to take the prescribed drugs, Ethambutol, Rifampin and Azithromyzin. Has anyone else made this decision? Extreme fatigue and coughing are my biggest problems right now. Any suggestions on alternative medications or pulmonary therapy? I’m so happy to have found this group for some insight on what I will be dealing with.

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Sue, Volunteer Mentor | @sueinmn | Jun 10 10:53am

In reply to @nicolettagio "Your question was from 2024, but I’m wanted to respond for you and others that may..." + (show)

@nicolettagio Can you please provide a link to a scientific study that says mulling leaf can heal MAC? It reportedly has mucus thinning properties, and helps some people expel more mucus when doing airway clearance.
But I have never seen a report saying that it can cure a mycobacteria infection.

smtdoc | @smtdoc | Jun 11 10:02am

There is a night and day difference between the routine and the robotic bronchoscopy. I have had 5 of the former and one of the latter. The latter is more invasive but, as I understand it, it can visualize much smaller airways. In my case that meant being able to actually see the interior of a cavity and the hyphae (growth projections) of the Aspergillus. Its a double edged sword though because if later routine bronchoscopies don't show much, I wonder if the robotic would show more!

cousteau1827 | @cousteau1827 | 6 days ago

In reply to @nicolettagio "Your question was from 2024, but I’m wanted to respond for you and others that may..." + (show)

@nicolettagio
There are so many brands out there. What kind are you taking?

Sue, Volunteer Mentor | @sueinmn | 6 days ago

In reply to @cousteau1827 "@nicolettagio There are so many brands out there. What kind are you taking?" + (show)

@cousteau1827 Let me repeat - mullein will not cure (or treat) a MAC infection.
What other measures are you taking to improve your lung function and mucus clearance?

cousteau1827 | @cousteau1827 | 6 days ago

I am not! I couldn’t tolerant the three meds. had a really bad reaction to the Ripabutin and eyesite went very blurry on Etham…
Right now just taking the Azithromycin, not sure it’s doing anything. The only symptom I had was a smokiness daily at back of throat but no coughing. My cats can showed nodules and cavity