MAC nodules

I have had nodules with my MAC. Have had biopsy on them only because I have had breast cancer 2 times and my Dr wanted to make sure the nodules were not related to the cancer. They have been due to the MAC. I too am short winded. I start a new med Arikayce tomorrow and am anxious to see the results. Glad to hear you are walking each day....keep up the good work.

@bibesGood morning! There are different types of the disease: nodular and cavitory. Many women have the nodular variety. When the nodules reach a certain size they need to be biopsied. Most are harmless. Mine are watched due to the prevalence of lung cancer in my family. In spite of being very debilitating for me, I actually look at MAC as a blessing now ( most days:)). (Irene5)

@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?

@bibes I was diagnosed with MAC almost 5 years ago. My lungs were cloudy at first, then got better each subsequent follow up visit. The chest X-ray showed a nodule last year, but my pumonologist didn't think it was anything serious. So far I have not felt anything out of the ordinary. I don't have fatigue and am not short of breath. And I'm not on drug treatment and have no plans to go on any treatment for the foreseeable future.

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!

@bibes I have been treated for MAC for about 19 months and have had it for 4 years. I have nodules. I had biopsy in 2015 and in April of this year. I have my first Mayo apt on Aug 20.

@bibes You really need a sputem test done along with a suseptibility test. Insist on it. It should be determined how colonized your lungs are, and with what specie(s), and which antibiotics will combat it. If your dr doesn't think those things are important, then I would guess that they might be a little clueless about how to treat this disease.

I am not coughing up anything. I live in Houston (I am really a Californian but that's another story.). I have just gotten pretty short of breath and
tired. Maybe the nodules haven't grown since 6 months ago. I hope I don't have to have the bronchoscope thing. The funny thing is my
mother was the first person ever to be bronchoscopes in the early forties. She had tb and it saved her life. They put some sort of heat
eight into lungs. At least that's how I remember it. She was in a sanitarium for three years.
I will let you know what happens after my upcoming cat scan (and I know about having too many of them). Thank you for your advice. I value
your counsel. Bibes

I have Mac and also have nodules for years. They have remained stable and a few have gone away.

@bennb023 ...That's good to hear! Please tell us how you have managed this.