My sister has MAC & can't handle treatment. How can I help?

@gina2023 Gina, please know that MAC (Mycobacteria Avium Complex) is an infection, not a death sentence. Even if your sister is not able to tolerate the full antibiotic regimen to eradicate the infection, there are many strategies and treatments available to keep the infection at a "smolder" so she can enjoy life.

Please join us in the MAC & Bronchiectasis Support Group to learn more about MAC (also called NTM or non-tubercular mycobacteria) and some of the options available to her. Here is a discussion that might be helpful to you:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
I will ask the moderator to move this discussion to the MAC & Bronchiectasis group so others "in the same boat" can reply to you.
In the meantime, please know we were all frightened by what we read and heard at first! I myself survived the antibiotic regimen and have lived MAC-free for over 7 years. My Mom, who had MAC along with many other health issues, could not have handled the same regimen, so she was treated with daily nebulizer treatments, and a single antibiotic during flares. When she died several years later, it was from another cause entirely.

@sueinmn

Gina,I understand your feelings .I had NTM presenting with the a 3 cm cavitary lesion. They wanted me on antibiotics for two years with a pick line doing some IVs. I could barely make two weeks and decided to consult a surgeon at NYU in Manhattan. I had a robotic lung Resection on March 2 and I am totally fine now. My pulmonologist did not suggest surgery, but I went forward in finding someone who would do it. This is all dependent on how your sister’s MAC presents. Please see if she may be a candidate for surgery and therefore not have to take antibiotics anymore .

@visions63 Great job thinking out of the box and advocating for yourself! NY definitely has some great hospitals and doctors!

@jimpop738 thanks …just did a lot of research …..My mass was so encapsulated that antibiotics would have never penetrated it to begin with..Only 2 surgeons in NYC do this kind of Robotic surgery and I had the best .. Dr Robert Cerfolio .For me it became a quality of life decision because I couldn’t do the antibiotics.

@visions63 When you say encapsulated, what do you mean. I have cavitary MAC going on 13 yrs… one particular cavity changes a lot. On CT it looks blacker, whiter, bigger or smaller. Ive had it biopsied and recently even a pet scan, in addition to regular CT scans. I never heard that adjective used. I’ve been on two sets of antibiotics but not what you were looking at. I’m picking a screen grab of your share here and that doctor‘s name thank you.

….Encapsulated means that your white cells form a protective barrier around the bacteria or cavity ..So you have a cavity ,or hole of bacteria and Necrotic tissue surrounded by your white cells trying to protect you from that bacteria .Think of a donut,that is your cavity with an outer layer of white cells . They say having surgery is last resort for some ,but for me, it was the only method of treating this disease. This surgeon was fantastic and I’m already way recovered six weeks post surgery. Great Hospital ,great surgeon. ,great surgery. I will follow up with a CT scan three months post surgery date and some sputum tests, but I really have no symptoms…! Dr Robert Cerfolio ❤️,NYU ,NYC .

@ellenblythe ..oh forgot to mention,only 2 surgeons in NYC do this Robotic wedge lung resection .Surgery is also dependent on the location of your cavitary mass…mine was Apical, which means upper lung ,but a tele visit with Doc would be a starting place for you .

@visions63 I was diagnosed with bronchiectasis with a 3 cm cavity left upper lobe a year ago. I've been on the big 3, currently started on clofazamine, and nebulized amikacin, along with azithromycin and ethambutul. Will get another CT in July. I've spoken with the surgeon and he stated that due to location, it is a very risky procedure (close to pulmonary artery, heart) with comorbidity at 30%. I'm uneasy about having the procedure. Glad to hear yours went well. I live in Oregon.

I would make a televisit with Dr Cerfolio and send him a copy of your CT .
If he thinks it’s doable, I would make the trip to New York!… I don’t know if your surgeon’s is capable of performing this procedure or even if he does it, but the risks are very much lessened using robotic, minimally, invasive, lung wedge resection.