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@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the "big three" antibiotics because my pulmonary doctor didn't think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I've not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the "big three" and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one's conditions warrant them. Let's hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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Replies to "@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up..."

@trissi No, I live in Wisconsin. My doctor works for the Pulmonary Clinic at the University Hospital here in Madison, Wisconsin.

@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.