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Recently diagnosed with MAC and nervous about meds
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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@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.
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2 ReactionsThere 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!
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1 Reaction@nicolettagio
There are so many brands out there. What kind are you taking?
@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?
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1 ReactionI 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
@happyhealthyme
I used it successfully and my CT was better. Then I developed an itchy rash and discontinued it. The rash went away. However my next CT was not as clear so they put me on a nebulizer. I am considering trying it again. It is definitely worth a try!!
I have Mac and haven't used any meds because I have severe vertigo with anything. Azythromycin is about the only thing that used to work for my Pneumonia's. And does not cause my vertigo. I have my Primary at home and she said she can't order it . Not certain why. I use Ivermectin and Lions mane; as I also have parasites 🙁
Its tough not to be comfortable outdoors. That was my life! I don't have cough issues so far unless I am doing some *cheating with my plants* outside 🙂
@bkat1949 What method do you use for airway clearance? Some people have great success "knocking down" MAC by keeping their lungs as clear of mucus as possible.
@sueinmn
At the present time, I don't use anything. I had always been active outdoors. My county is high with troubling air quality. I can feel the difference when I visit family in N Fl. When I go out I use my mask and limit time. I felt my 1st flair when I was doing some planting; It took hours of deep breathing slowly in/ out to finally get back to normal. Considering a move from central Fl
@bkat1949 A flare (or exacerbation) typically manifests as an illness, with cough, fatigue, fever, shortness of breath, and increased mucus production. Your description sounds more like asthma or over-reactive airways.
What is your diagnosis?
Has your pulmonologist suggested a visit with a respiratory therapist to learn how to do airway clearance? Just being active may not be enough to keep your lungs clear. If they have not brought this up, they may not be experienced in helping people manage bronchiectasis & MAC.