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Hi!
I had MAC AVIUM and went on antibiotics for the 18 months and cleared in Nov 2023. However, I did not produce sputum except during Bronchiectasis exacerbation. Six months after clearing MAC- I had one of these flare ups and sputum tested positive for mycobacterium Abcessus. I haven’t been able to produce viable sample since until last month and still waiting on results. Anyway, I feel great!
I don’t do any nebbing, saline, etc because it doesn’t produce anything. But I do exercise at least 30 minutes a day and live by all the precautions necessary not to get reinfected (ie: masking, hand washing/ sanitizing,only drinking Spring water, boiling all other water, soaking all water faucets/ shower heads in bleach every 2 weeks, etc) Long story short…
I feel good again and I will take that and be grateful and not let the mental part of this disease take up rent free space in my head. Good Luck!! Dee
Replies to "Hi! I had MAC AVIUM and went on antibiotics for the 18 months and cleared in..."
If I were not wrong, the antibiotics for MAC also works for MAI. Will you consider other treatment like stem cell therapy, or T cell therapy, or even phage therapy? Take care! 🙏
My MAC was diagnosed in 2016 and the pulmonologist stated that I had probably had it for quite a while from what he saw in the X-ray which means that I have had it for over 10 years. I am allergic to to the big 3 meds to the point that after taking them for a week I was bedridden and lost 10 pounds and had to stop taking them. Also Arycace made me exhausted. I went to NJH as an out patient for a week where they did every test that they could think of and the only thing Dr. Daley and Dr. Eddy said for me to do is to nebulize twice a day and live a healthy life style. I am also one of those people who does not produce much sputum even when I use the nebulizer with 7 percent solution although I do produce a bit in the morning when I wake up. Amazingly at age 84 I am pretty healthy and the only noticeable problem I have is shortness of breath even when I walk quickly or do any type of exercise.
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Nana I am very happy for you. You said 18 months. Is it since starting treatment or after you turned negative. Thank you and stay off mac