(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@kwilbur (Kathryn),

I've never provided a sputum sample. Perhaps it was because my CT scan showed potentially serious stuff - I don't know. I'd always been quite healthy, am not a smoker but at that point was coughing up blood. My internist got me in to a pulmonologist in 2 days and the following Monday I had a bronchoscopy, the results of which were sent to 2 different lab areas -- one to find pathogens or bacteria or fungus, etc, and the other to find cancer cells. My pulmonologist called me that evening to let me know that one set of cells were growing bacteria like crazy (very good news to all!) - but a final determination of NTM/cancer/etc. was a few days away. It's SO important to get the correct diagnosis because if I had a fungus infection or lung cancer and they treated me for NTM/MAC, it would be devastating.

Best wishes to you on this journey.
Paula

@kwilbur (Kathryn) and @justjanet -

I worked 50-60 hrs a week as a software database systems developer for the past 12 years. I found working took my mind off my illness. And it helped keep up my stamina. This disease was not going to get the better of me! I also began an exercise program thru my employer's wellness program - at the suggestion of my pulmonologist. I needed to strengthen my good lung and build stamina. It was very difficult for me at the beginning! But today I still do these exercises. Big difference. Had a cardiac stress test a few months ago, and the cardiologist was amazed at my stamina, considering my lung issues - he asked my routine and where I'd be if I weren't doing exercises for my lungs.

Never heard of a doctor saying you couldn't work . . . even oncologists treating serious cancer.

All the best,
Paula

@justjanet,

I've had a diagnostic lung lavage which may be the lung cleansing mentioned earlier. I had this several years after my last bronchoscopy. It's to collect cells from various parts of the lungs for analysis. Quite painless.

Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

Kay,
My bronch. is in the lingula and right middle lobe and my MAC (nodules)is in right middle lobe and posterior left lower lobe. I wasn't told much by my doctor at Duke. But, when they were wheeling me in for the bronchoscopy she said "well, you must not have it very bad if you can't cough up a sample on your own". That was just another reason I knew I needed to switch Dr's. I probably don't have a severe case now. But, whether a person can cough up sputum on their own or not has nothing to do with the severity of their disease. Even I know that much from my research. So ixnay on that doc :). Luckily I found another. Tomorrow I have several appts at UNC Center for Bronchiectasis Care. They also specialize in the treatment of NTM's. I think they will be able to give me much better answers on how I should proceed. I may not need treatment yet as my symptoms aren't bad - lack of appetite is the worst of them. But, I have lots of questions and it will be nice to talk to someone I trust knows a lot about this. I'll let y'all 🙂 know what I think of the clinic. It might be a good resource for anyone that is close to Chapel Hill, NC. We have so few places like that to go to. I would like to learn more about clearing my lungs. There are times when they feel "full" and I know from reading these posts that there are exercises that we can learn to help clear some of that. Maybe I'll learn more about that tomorrow too. I'll let you know. Janet

Janet, LOVE your spunk! By golly .. only WE can be the best advocates for ourselves .. trust our gut feelings .. and NOT give up until we find a doctor who will listen to us and is KNOWLEGEABLE about our disease! I'll be really interested in what you find out about Bronchiectasis .. I know I was so intent on healing from the MAC that I have never paid enough attention to my Bronchiectasis .. despite it's lingering effects .. and the continuing coughing! Let us know what you have learned! We are all on this journey together .. shared knowledge is powerful! Hugs to you and good luck with your appointments! Katherine

Lilianne, what a great response to Kathryn! Each of us has had a different journey .. but yet the same journey .. and I think it helps SO much that we all share our own unique perspectives so that new people see how each body and experience can and is different so they know not to be concerned .. that THEIRS will be their own journey .. NOT just what they may read about in one individual posting.

Hugs to all on our indeed shared journey! Katherine

Thanks Paula .. that may be the explanation .. thanks! Because I have read that with sputum .. it may be from just one area of the lungs rather than various parts of the lungs. Interesting .. than you! Katherine

I am so happy for you. I seem to have started with bronchieticus and have<br>my c-scans show evidence of MAC. I will get that sputum sample in though<br>before any intervention. I just don't know what I have. I do understand<br>James statement about the isolation of fatigue. I used to be so active<br>and involved in so many community events. Wishing for better days! But<br>I love the courage and advice I find on these posts.<br>

Thank you Paula. I actually went to a parking lot, lay down, and tried my<br>best. The result was nothing. It is good to know that the C Scan can be<br>a route to diagnosis.<br><br>You all are so wonderfully courageous... and so healthy in mind. You make<br>me feel better and so less alone.<br>