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Newly diagnosed

MAC & Bronchiectasis | Last Active: 1 day ago | Replies (64)

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I haven't started any treatment yet. I believe the next step was to determine resistance. I have a follow-up appt in 2 weeks where she may discuss some options.

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Replies to "I haven't started any treatment yet. I believe the next step was to determine resistance. I..."

One thing I have learned is how important it is to be your own advocate, along with how little my local "experts" know. No dig on them, it's just that there is a reason why there are clinics that specialize in NTMs. The day my pulmonologist gave me the news that I tested positive to MABC, he gave me a prescription for 7% saline and told me I need to nebulize 2x/day. I later learned, that was really smart on his part. National Jewish NTM/BE Clinic stressed to me how important it is to nebulize with 7%. Studies have shown that nebulizing at early stages of the disease improves outcome. The lab should do a count and determine if your MAC is macrolide resistant, along with which other antibiotics would be classified as Resistant, Susceptible, or Intermediate. On September 13th NJH is having a NTM conference for all those diagnosed with an NTM. This is different than their professional NTM Conference. The registration fee is $25. It may be helpful for you. I have attached info of the conference.

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2025 NTM & Bronchiectasis_ Patient & Family Conference (Hybrid Event) (2025-NTM-Bronchiectasis_-Patient-Family-Conference-Hybrid-Event.pdf)

Hi. I have learned so much from this group! I like my pul doc and ID doc but I was only prescribed the Big 3 and nothing else. I have ordered the Ombra nebulizer and the Aerobika device and wonder why docs didn’t suggest them. I’m anxious to get going. Have been on the three antibiotics for three weeks and so far so good. I saw my ID doc this morning and he said that is the case more often than not so I hope that all goes well for you. The initial diagnosis and learning period is the hardest. Once you get your protocol and timing of meds and airway clearance it will feel much better! You are on the path to a good resolution!!

Are all nebulizers created equal? I've only just window shopped on line.
To me that does sound like an obvious place to start. I'd really like to loosen the crap in my chest. I can get some up once a day or so. But not on command.