1. < MAC & Bronchiectasis

Nebulizer and saline treatment with daily exercise

Posted by laurademaine @laurademaine, Apr 30, 2022

Hi there. I was diagnosed with NTM MAC in January 2022 Confirmed with CT/PET scan and scope. Had. 5.5 cm mass in the right upper lobe. The only symptom I have is fatigue. No coughing, no blood, night sweats, shortness of breath. Nothing. The pulmonologist and ID doctor want me to start the big 3 antibiotics. I’m reluctant to do so because Overall I feel good and also I will be moving to another state in 2 months at which time I will need to find a whole new set of doctors. I would love to know if anyone out there has a pulmonologist and or Infectious Disease doctor in the Phoenix area. Also has anyone tried a homeopathic approach by just using a nebulizer and saline to clear the lungs and get daily exercise like walking, bike riding, yoga and meditation. I am really leaning towards this treatment for the next 6 months, then have a CT done afterwards to see if they’re any changes in the size of the mass and how my overall health is. Please let me know your feedback on this. Thanks.

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bbeers | @bbeers | Jan 5 9:29am
In reply to @sueinmn "Hi Barbara, I started the Big 3 just 3 month after I was diagnosed, soon after..." + (show)
@sueinmn

Hi Barbara, I started the Big 3 just 3 month after I was diagnosed, soon after the final culture results came back. First I needed several courses of treatment for pseudomonas.
It was never in question whether to use them - I was very sick and getting worse, because it took a long time to get diagnosed.
I was on the antibiotics for 18 months - at first 3 times a week, the last 6 months it was every day. Yes, there were side effects, but I managed to live with them, it just got bad when the meds were every day. BUT, that was quite a while ago, and the new protocol of adding Arikayce if the cultures did not convert to negative after 6 months did not exist then.
Knowing what I have learned in 5 1/2 years on Connect, IF I was asymptomatic AND I did not have M. abscessus, or cavities or numerous nodules in my lungs, I would try to convince my docs to do a 6 month trial of rigorous airway clearance with 7% saline, exercise and healthy diet.
That is not the same as "wait and watch" - it is actually an established non-antibiotic protocol, and requires monitoring with every 2-3 months and probably a repeat CT at 6 months. This article talks about it:
https://www.sciencedirect.com/science/article/pii/S0929664620302035
What are your doctors recommending today? Have you been able to find one who sees MAC often?
Sue

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Hi, the Pulmonologist wanted me to start all 3 at once for 3 days a week. I asked the nurse who called me about the meds if I could start one at a time and she said No. That was back in early October. I made the decision not to take them and started looking for an ID Dr. I started with her in early November and she does not feel I should start them since I have no symptoms. I currently have an appt. in January with a new Pulmo Dr. since the ID Dr. says I still need one for the mild COPD that I have. When I see her again I am going to ask that I start the airway clearance. I do have 2 small nodules and something she referred to as consolidation. I can't imagine where I would be today if I had not accidentally found out about this wonderful group of people that have taught me so much about this disease. Thank you so much.

REPLY
2019mc | @2019mc | Jan 8 9:46pm
In reply to @sueinmn "Here is the dilemma with MAC - One can try rigorous alternative treatment and it may..." + (show)
@sueinmn

Here is the dilemma with MAC - One can try rigorous alternative treatment and it may work. Or it may not and you need to progress to antibiotics. It is always important to discuss with your doctors why it is important to initiate treatment when they recommend it.
You said "...I was diagnosed about a year ago for MAC and avoided treatment..." The alternative to medication is not to just wait, but to adopt a lifestyle of airway clearance and other strategies.
Here is an excellent article that describes the options:
https://www.sciencedirect.com/science/article/pii/S0929664620302035

If you need antibiotic treatment, it is okay to be worried, but remember, many of us here have taken them successfully, and are here to encourage you and help you manage the side effects.

What have you been doing to try to heal your lungs without the medication?
Sue

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Sue, thank you very much for the excellent article
https://www.sciencedirect.com/science/article/pii/S0929664620302035

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