Member has chosen to not make this information public.

Posts (311)


@windwalker no worries. We all know that in general antibiotics taken long-term do more harm than good. But there will always be cases where the conditions are dire enough nothing short of antibiotics works. Somehow I had a feeling as I read your posting that you might have meant to say something different. Now I know you did. Thanks for clarifying that.

4 days ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@ann0616 Hi Ann, I also live in Madison. I have been diagnosed with bronchiectasis and MAC/MAI in the fall of 2014 after coughing up large amount of blood and an overnight ER stay due to MAC/MAI infection. The possibility of TB or lung cancer did cross my mind. But it turned out to be neither after the CT scan and sputum tests. It was suspected that I might have been exposed to TB as a child due to positive skin test although the disease never developed. Such an exposure was attributed to the development of my bronchiectasis, which in turn makes me susceptible to MAC/MAI infection. Although I do cough and have excessive mucus sometimes, especially in cold weather, I don't have other issues such as shortness of breath, fatigue, etc. I don't know which pulmonologist at UW hospital you will be seeing. I have been seeing Dr. Scott Ferguson for the past 4 years. I'm not on any meds for the time being. Dr. Ferguson and I agreed that we would take a wait-and-see approach and will only consider getting on the drug treatment when it becomes necessary. So far my CT scan and chest X-ray results show no worsening of my bronchial tubes. I am able to lead a normal and active life. For that reason, I'm probably not able to offer you much help in the direction of possible treatment for your case. But I do want to lend you emotional support and to let you know that there is no reason to panic at the mention of MAI. Until I came to this group, I had no idea bronchiectasis and MAC/MAI are such prevalent diseases. Although there is no cure for bronchiectasis, MAC/MAI is treatable. I don't even know if I'm still positive with MAC. Since there is no new development in the CT scans and chest X-rays for the past 4 years, I think it has either gone away on its own or has gone into remission. Either way, I'm happily living my life without worries. Please keep us posted of what is going on with you and let us know what you find out from your visit to the UW Pulmonary Clinic. There are plenty of people in this group who can offer experiences, suggestions, and support. One thing is for sure, you are not alone in this.


@hydrang3a I agree with you about bronchiectasis and antibiotics. I'm an example of living a normal life with bronchiectasis but without antibiotics. It is true that, since bronchiectasis has no cure, those of us who have it will always be vulnerable to being infected with MAC. But I don't think antibiotics can be safely used long-term simply to prevent MAC from happening. And I don't believe the doctors would even be willing to prescribe antibiotics if you are not yet infected with MAC or your infection is not progressing enough to affect your daily living. There are just too many cons with using antibiotics long term.

Dec 24, 2018 · Happy Holidays in MAC & Bronchiectasis

Love the sparkling tree! Happy holidays to everybody.

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

@hydrang3a My take on this issue is that, although the bacterial is prevalent and pretty much everybody can have exposure to it, not everybody will be infected. The reason is that those of us who have been infected are invariably suffering from some kind of underlying health problem that makes us susceptible to this particular infection and most of these underlying health issues are either very tough to cure or simply incurable, whereas the healthy people will not be affected by the exposure. So even if we are able to get rid of the infection through treatment, our underlying diseases will very likely to cause us to be re-infected and we end up being put in this vicious cycle. It sounds hopeless and depressing. But it doesn't have to be. We just have to be very diligent in avoiding the exposure to the bacteria while trying to stay on top of our existing health problems.


@skylarkny Just to make you feel even less alone, I have bronchiectasis and MAC. But, just like you, I'm not immunocompromised and have been very active as well, playing tennis all year round several times a week. I've never smoked and rarely drink. But I coughed up huge amount of blood completely out of the blue one day (after having played tennis for 1.5 hours no less). I spent a night in the ER and continued to cough up blood until the small hours of next day. The words "TB" and "lung cancer" were throwing around all night long and everybody immediately gowned up and put on face masks. I was terrified and feeling completely alone although my husband was right there by my side. When my diagnosis came, I was caught off guard as I had never heard of MAC. The only difference that you and I now have is that, after the blood bath night, I went back to lead a normal life and I still am, with no treatment of antibiotics and no symptoms that others have complained of having, such as fatigue. However, I do still cough and have thick mucus. I don't expect that to go away any time soon, or maybe ever, due to my bronchiectasis. And I'm learning to cope with it the best I know how and not to let it hinder the way I would like to live my life. Hope you eventually find a treatment that suits your situation and gets you back on track to being active again. I'm sure it will happen. We just have to keep a positive outlook and never give up.

Dec 8, 2018 · Extreme fatigue in MAC & Bronchiectasis

@helem I don't know which email provider you are using. I use gmail. There is a Spam folder where some of my legit messages would go. I can also set up different sub-folders/tabs in my Inbox to separate messages into Primary, Social, Promotion, etc. From time to time, messages would go to wrong sub-folders as well. What I do is to immediately move the messages to the correct folders/sub-folders. It looks like if I do this repeatedly for a few times, the email server is smart enough to get things right after a while. The ones that fall into the Spam folder incorrectly, I have an option to click Not Spam to move them out into the Inbox. If you leave the things as they are and just open them there, they will keep going there because the email server will think that is the right place to put them.