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MAC & Bronchiectasis | Last Active: Feb 6, 2018 | Replies (56)Comment receiving replies
Replies to "@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up..."
@ling123 hi I also live in Wisconsin and I see an I'd doc. I am on all kinds of med which includes an iv....
Ling, my doctor at National Jewish is monitoring the development. She said if the MAI load in the sputum sample was 50 and under for Mai/Mac that she would NOT recommend the big three at this time. I have 0 symptoms but there is a lot of progression over the past three years with more nodules and spreading.
@loveblue So sorry to hear that your lung condition is progressing toward the wrong direction. I'm not a doctor, so I don't really know the specifics of test results. But I do know that whether one has symptoms is not a yardstick for judging whether one's condition is worsening. However, truth be told I don't really know what the symptoms are for MAI/MAC. I was diagnosed with MAC 3 years ago after coughing up large amount of blood. But I have not done that since and have not take a sputum test since the initial diagnosis. I do have excessive mucus and cough quite a bit. But as I understand it, that is more of symptoms of bronchiectasis, not MAI/MAC. I have had many chest X-rays and gone through a series of lung functioning tests. All tests so far have suggested that my lung conditions are stable and slightly improving. Have you discussed with your doctors about the indications of all of the things you mentioned: MAI load in sputum samples below 50, yet more nodules in your lungs and spreading?
@trissi My philosophy is this: the purpose of taking the medication is to make our conditions better, or at least to prevent them from getting worse. If my conditions continue to deteriorate and the only thing that can stop the slipping slope is these antibiotics, then I would be a fool not to take them. But I don't believe these drugs will completely eradicate the bugs anyway. Even if they do, it will most likely be temporary. Because there is always the danger of being re-infected, especially for those of us who have bronchiectasis. In the meantime, the drugs will be wreaking havoc in our bodies and potentially damaging other organs. For this reason, I'm convinced that while the conditions of my lungs are stable and slightly improving, even though I have no idea if I'm still positive for MAC or not, it is better for me not to take the drugs but keep the option open and be watchful and vigilant for signs of future infections.
@ling123 I agree 100%. I, also, have no symptoms so I'm taking the wait, and watch, and see approach also. Doing all I can to keep my lungs clear.
I have always wondered if I would have taken them sooner if it would have been easier to eradicate.
@jkiemen , I often second guess my choice to decline treatment in 2005 myself. Two out of three doctors said they would not recommend going on the big three, so I didn't.
@trissi No, I live in Wisconsin. My doctor works for the Pulmonary Clinic at the University Hospital here in Madison, Wisconsin.