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DiscussionStarting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
Replies to "Sorry nana, just read previous texts and some question were answered. Has anyone in the group,..."
Well, my ID doc and the people at NJH all say that MAC & NTM are everywhere, though more prevalent in some places compared to others, so the only truly safe place to move would be into a bubble. If I didn't already have access to really good medical care (overall, not just one disease) and close ties to my two homes, I might consider moving to an area with better care or a large multispecialty center like Mayo. If the new place also offered other quality of life features.
In early days with MAC and bronchiectasis, I was very anxious about making many uncomfortable adjustments in my life. As time progressed, I got some very wise advice from my ID doc "MAC is an infection that is slow to grow and slow to go. We can manage it so you can have a good life. Bronchiectasis, by and large, is a disease you live with, not die from, Take reasonable precautions, then go out and live your life."
Also, over the past 4 years, I have learned that many people who are MAC-positive do not rely on antibiotics. I am one of them. I was very ill when diagnosed, had both pseudomonas and MAC, a went through over 18 months of antibiotics, improving but not cured. Finally, the side effects were so bad that I quit, with the blessing of my docs. I now rely on mucus thinning meds, 7% saline nebs and airway clearance plus exercise and a healthy diet. So far, in 2 1/2 years no relapse, and my CT is the same.
I look forward to hearing the results of your second culture. Are you comfortable with your doctor's experience in treating MAC?
Sue