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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hi Connie, I am curious, how old are you? I took the pills at 67-8 and they killed me. At first no side affects(one year) but then they all started piling on. I eat organic, work out, am fit but the azithromyacin wiped out bowels,(severe cramping, many bathroom trips, weakness) hearing, (tinnitus) eyesight, (glaucoma) etc. Now I am dealing with the fallout. The mac does get a little worse each year and little harder to breathe, and yes, fatigue, but still moving along, cruises, family gatherings, exercise. My main thing of course is not to get sick...Anyway, I regret taking the pills and am hoping something else comes down the pipe, an inhalant, etc. This is a brutal pill regime. I think you can do it if you are younger. Thanks xo hope to all of us!
Replies to "Hi Connie, I am curious, how old are you? I took the pills at 67-8 and..."
I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.
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@unicorn thanks for your honesty. I may have to decide soon whether to start the 3 pill regimen or not, and my gut is sensitive anyway. I’m 57. Waiting for culture results.... and praying.