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In shock after MAC diagnosis

MAC & Bronchiectasis | Last Active: Nov 1, 2022 | Replies (136)

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@ling123

@dsilva I have a similar situation as @ginak in that my pulmonologist didn't think drug treatment would have better outcome than wait and see option because the side effects of the drugs might do more harm than good to my body and the drug treatment would not guarantee success once and for all. Even if the treatment did manage to get rid of MAC at first, there would still be possibility that it might re-occur. I was diagnosed with MAC 5 years ago and have had bronchiectasis for many years prior to that point. I did not have any symptoms that others described, such as weight loss, fatigue, shortness of breath, etc. at the time of diagnosis except coughing up large amount of blood once out of the blue. He suggested that I schedule visits with him, first every 6 months then once a year, and make decisions at each visit whether I should go through treatment based on my lung conditions at the time of the visit. So far my lungs have not deteriorated at all and I continue to live a normal and active life without taking any medication.

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Replies to "@dsilva I have a similar situation as @ginak in that my pulmonologist didn't think drug treatment..."

@ling123 @windwalker My story is very similar to ling123 symptom wise-except my ID doc put me on the big 3-I did not tolerate rifampin which the cultures showed were specific to my MAC. After a year on the other two, cultures still positive. I cough some, but work full time, exercise daily, and can hike in the mountains! I’m going back at the end of the month to ID- I will not go back on the meds at this time.
And yes-I’m an avid gardener- now raising Monarch 🦋!