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@bibes Hello Elizabeth, and welcome to our group. To answer your question about the nodules; most of us on here have, or have had nodules with this disease. Please don't be too alarmed as most people over 50 years of age have some nodules. Nodules can come and go and sometimes completely disappear. They are something to keep an eye on for both number and size. I have had the same two nodules for many years. My Mayo drs are not concerned about them because they do not change. I have been mac-free since 2014, but still have the nodules. I hope this helps. TIP: cat scans should only be done 5 yrs apart unless emergency situation. Those scans are powerful and deliver a lot of radiation. As for lack of energy, that seems to come with the mac territory. As you get a grip on your infection, your energy should return. I was never treated with the Big 3 antibiotics, but instead, was treated with two alternating antibiotics for 10 days each month. My mac cleared out after one year on that cycle. If you can get away with doing treatment like I had, it might be easier on your system. I know that some drs do not want to put people over 80 yrs of age on the 'Big 3'. It would all depend on your susceptibility test that shows what antibiotics will work on your specific specie of mac. Do you have a copy of your susceptibility test? We ALL should. Are you nebulizing any meds at this point? Do you feel your dr has adequate knowledge on how to treat mac?
Replies to "@bibes Hello Elizabeth, and welcome to our group. To answer your question about the nodules; most..."
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.
Hi Terri, I am hesitant to do the Big 3. I am wondering if you could tell me the names of the antibiotics you took. Alternating for 10 days a month sounds much more doable. I know everyone is different but I'd like to check that strategy out with my dr. Thanks.
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Thank you so much, Terri. That was a big help. May I ask you where the antibiotics that you were put on, some of the Big Three>
And what were their names? No, I have not yet had a susceptibility test? We have not gotten that far. No I am not nebulizing yet.
I think my doctor has the required knowledge. We will see. But he is so darling I have a crush on him and so do all his
other patients. Let's get real about what is important. Ha!