Thoughts about “the watch and wait” approach.

Other factors are your weight (loss?), blood tests (cbc, cmp), PFT results and of course cough frequency.
If you don't trust this Dr by all means get a second opinion, maybe an ID which is actually a nice addition to having a pulminologist

😊 thank you

This is interesting to us as my wife is newly diagnosed.
No infection currently but coughing and mucus every hour except for a 2-3hr stretch in the early morning.
She has not yet received any lung clearance instructions and her Mayo pulmonologist isn't scheduled to be available for an appointment for 6-8 weeks. We'd like to not wait if lung clearance can help in the meantime. Thanks for any suggestions.

I was diagnosed with MAC a year ago along with H-influlenza. Treatment for H-flu relieved my fatigue and greatly reduced my cough and congestion. When I was reluctant to start the Big 3, after watching videos and reading of experiences on this and other support networks, my pulmonologist referred me to Dr. Winthrop at OHSU. Dr. Winthrop concurred that treatment would likely be needed, but offered the option of being on a drug trial for six months. I chose to do that and started in July on either clofazamine or placebo. I send sputum samples every other week and have an ECG once a month, saw him at the beginning and half-way point for bloodwork and other testing. All will be repeated at the end in January along with a CT scan which will reveal how well my lungs are doing.
I figured I couldn't get more careful "watching" than that. I nebulize 7% saline 2 x daily, use the Aerobika and walk almost every day. Neither he nor I know whether I'm on the drug or placebo. I was thinking placebo since I've noticed no side effects, but apparently my ECG does show an effect that has Dr. Winthrop convinced I'm on the real drug. He doesn't get the results of the sputum samples and will have to do his own and at the end of the trial. That and the CT scan in January will determine what options are open next, but though my sputum still shows bits of green, my cough and congestion are definitely improved.
Either way, I feel good about contributing to the research, and, with any luck, vigilant airway clearance and exercise will be enough to keep my MAC and bronchiectasis from doing more damage. Thats my 2-cents on watching and waiting. Wish me luck in January!
Anna

Do you have nodules and escerbations? There are certain criteria for tx with meds. I'm in watchful waiting too, with mycrobacterium lentiflavin.

This is interesting to us as my wife is newly diagnosed.
No infection currently but coughing and mucus every hour except for a 2-3hr stretch in the early morning.
She has not yet received any lung clearance instructions and her Mayo pulmonologist isn't scheduled to be available for an appointment for 6-8 weeks. We'd like to not wait if lung clearance can help in the meantime. Thanks for any suggestions.

Join the Lung Matters group on Facebook. Excellent source of info on ACT's

I was diagnosed with MAC a year ago along with H-influlenza. Treatment for H-flu relieved my fatigue and greatly reduced my cough and congestion. When I was reluctant to start the Big 3, after watching videos and reading of experiences on this and other support networks, my pulmonologist referred me to Dr. Winthrop at OHSU. Dr. Winthrop concurred that treatment would likely be needed, but offered the option of being on a drug trial for six months. I chose to do that and started in July on either clofazamine or placebo. I send sputum samples every other week and have an ECG once a month, saw him at the beginning and half-way point for bloodwork and other testing. All will be repeated at the end in January along with a CT scan which will reveal how well my lungs are doing.
I figured I couldn't get more careful "watching" than that. I nebulize 7% saline 2 x daily, use the Aerobika and walk almost every day. Neither he nor I know whether I'm on the drug or placebo. I was thinking placebo since I've noticed no side effects, but apparently my ECG does show an effect that has Dr. Winthrop convinced I'm on the real drug. He doesn't get the results of the sputum samples and will have to do his own and at the end of the trial. That and the CT scan in January will determine what options are open next, but though my sputum still shows bits of green, my cough and congestion are definitely improved.
Either way, I feel good about contributing to the research, and, with any luck, vigilant airway clearance and exercise will be enough to keep my MAC and bronchiectasis from doing more damage. Thats my 2-cents on watching and waiting. Wish me luck in January!
Anna

I’ve been recently diagnosed with MAC and my Pulmonologist recommends a watch and wait approach with a 3.5% saline solution nebulizer treatment twice per day. We found this accidentally from a CT scan which showed lung nodules and some bronchial damage.
How can a saline nebulizer treatment help this serious disease? Should I get a second opinion from the Mayo Clinic? Also would like some advice on where to find comprehensive disease information.
Thanks, Lorraine