MAC nodules

Posted by bibes @bibes, Jul 22, 2019

Hi, everyone. Hope you are having a good day. I thought I knew almost everything about the MAC disease was diagnosed with five years ago.
Six months ago nodules were found in my lungs. I am having another catscan in a few weeks. I haven't seen my pulmonologist since them.
I am 85 and have gotten more and more tired since that last catscan and shorter of breath. 'But still walk 2 miles every day. My questions are this:
Does everyone with MAC get nodules? What are your experiences with this nodule thing? Thank you so much for any information. Elizabeth

@chattey2

I think many pulmonologist are clueless when it comes to BX. I had to demand sputum cultures and then when Dx with Mac and several bacteria’s, he tells me the cure is worse than the Desease. Finally, when a cat scan identified BX ordered from a cardiologist, he passes me to an ID. I now have my first white sputum in 3 yrs

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I’m new. What is BX?

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@sylvermoon8

I’m new. What is BX?

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BX is the abbreviation for biopsy.

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@fdixon63

Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary doc put me on Azithromycin, Ethambutol and Rifampin all on an empty stomach in the morning. I was hanging in there for awhile but after 6 weeks my husband had open heart surgery and I really got off track with losing weight. I've always been thin but with the stress and anxiety associated with his surgery really did me a trick. My follow up appt. with the pulmonary doc ended with him saying I would need to stop all the meds–that I might not be able to tolerate the treatment. His plan at the time was to start me back on the meds one at a time to see if one could be pin pointed as to one that was affecting my appetite. When I went back he said NO–All meds or nothing. He then said, if you don't get your sinus straightened out I won't be able to do anything for you. Saw ENT doctor and now on second round of a different antibiotic and prednisone. My confidence is shaken with pulmonary doc but not sure how to go about finding another one in Montgomery, Al area to go to. I heard it is very difficult to even get in the group here and would go to Birmingham if someone there is good. I read the treatment you did and was very uplifted by the success you had. I'm 73 and just don't know what the future holds. My doctor has never given me a single piece of literature about my disease and was so glad someone put me onto the Mayo Connect. Do you have any suggestion on how to search out a doctor in this area who I might be more experienced that this doc seems to be. Thank you so much. I have learned an enormous amount just this week of joining Mayo Connect. Have a blessed day.

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@fdixon63 Hi. You can go to the http://www.ntminfo.org site for a list of mac/ntm specialists by state.

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