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deemaniduenas (@deemaniduenas)

Non treatment of MAC

MAC & Bronchiectasis | Last Active: Nov 5, 2023 | Replies (40)

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@suzyqueue

I had a 10 cm cavity grow within 30 days while waiting to start treatment. Once I started the treatment, it did take a while to see any improvement in it but my symptoms improved drastically and the antibiotics kept things stable. When I started the inhaled Arikayce several months later on top of the antibiotics, the cavity began to shrink. You'll hear some say "the treatment is worse than the disease" which I disagree with.

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Replies to "I had a 10 cm cavity grow within 30 days while waiting to start treatment. Once..."

My cavitation has been present for over 5 years. Too much scar tissue to much about it.
After MAC for 3 years, aspergillus set in last year. 3 weeks ago, bad covid set in that I am about over. What a long haul but I feel pretty good considering the amount and long term antibiotics I am on.

Hi, so you were also diagnosed with MAC disease. Were you on the Big 3 meds? So you did not experience any side effects such as hearing loss or loss of eyesight? I'm to start the Big 3 and I'm scared stiff. Thank you

Remember we are all different. You cannot disagree,for all of us. For me after 4 years the cure became worse than the disease. I am currently in Denver seeing the doctors at NJH. They have done a bronscopy and will test to see if my body has grown resistant to the three meds. My hearing has taken a serious loss and my sight a small downward trend all due to the three meds. They told me for no do NOT take the meds. My pulmonologist ordered 3% saline - for almost 4 years I used 3%. Reading 7% was better on Mayo I found it much more effective. MAC is rare and I have found that many pulmonologist know little about it. We learn as we go. Our bodies are each different and so should be our treatment!