Thoughts about “the watch and wait” approach.

You can watch and wait but do not be shy about going to your doctor if you start to go downhill. The descent can be fast, and the climb out of the hole can be painful, steep, and months long. Try to nip anything that is happening in the bud. I have learned the hard way not to be a hero or afraid to look like a hypochondriac. I find it helpful to monitor myself. I watch my pulse ox, and when exercising, I always have a heart rate monitor. With me, at least, bad numbers foretell a stretch of illness. My pulmonologist is not interested in my numbers so much, but if the numbers coincide with even a small change in how I feel, I know it is time to make an appointment.

Thank you. Very helpful information. Since I am sadly new to this…should I also see an Infectious Disease Specialist?

Sue, can I ask what medication is the daily long medication you use before nebulizing saline?

I use Breyna - a generic version of Symbicort. Yes, it contains a low dose inhaled corticosteroid (ICS); it also contains formoterol, a long-acting beta-agonist (LABA). While steroids are usually not recommended for people at risk for MAC, my pulmonologist and I decided my need to breathe outweighed the slightly increased infection risk.
This was a gam-changer for me, because lifelong asthma had me feeling "air starved" most of the time, and was causing a feeling of pressure in my chest.
I have been on it for over 1 1/2 years, and recently had my very first exacerbation since starting, caused by a cold. I managed to get through it without antibiotics.
Sue

Do you know what strain? I would get another opinion from an infectious disease doctor and another pulmonologist. Not all MAC is slow growing. My left upper lobe grew a 10 cm cavity in it within 30 days of "waiting". Then you're looking at an even longer journey. The antibiotic treatment along with the nebulizing now can put you ahead of this.

My Pulmonaligist prescribed compression vest, which I do 3x's a day, with albuterol inhaler or nebulized, depending on how thick I feel my mucus is. She also prescribed Flovent inhaler 2x's a day and 600 mg of an expectrant each day. My ENT prescribed Azelastin 1x a day and nasel rinse 2x's a day. I work closely with my Infectious Disease Specialist on the wait and see part. I had to be on some pretty serious antibiotics when I was first diagnosed, Tobramyicin. I was on that for about a year and a half with some pretty severe side-effects, both short-term and long-term. When I notice increased coughing and thickening of my mucus, I take zinc and D3 1x a day, everyday until I feel better. I also make an anti-inflammatory hot drink of water 1/4 c. of lemon juice, 2T. raw honey, 1/4 t. each of Tumuric, Cinnamon, and Ginger. I do yoga everyday. I walk as much as I can. I stopped eating refined sugar, and lost 40 lbs. Keep stress to a minimum and test to a maximum. I was having full-blown infections every 3 months for the past 3 yrs, until I've started on this regimen. I have been antibiotic-free for a year now. It's a lot of time and work, but it is so worth it. I think you just need to have a good team of doctor's to work with, and pay attention to your bodies warning signs, and don't delay or put off treatments. Praying for us all. 🙏

If you are in a "watch and wait" situation, and you and your pulmonologist are diligent about monitoring your health, you probably don't need an ID doc - Now. If you reach the point where you are taking the antibiotics, and your body does not respond after about 5-6 months (this is a very slow process) that is time to bring in an ID doc - one who is familiar with treating MAC. I waited for a year because my pulmonologist didn't think I needed one, and it just prolnged my treatment.
Do you feel your pulmonologist is familiar with MAC and bronchiectasis? Have you been recommended to do daily airway clearance? To use 7% saline to tamp down the bacteria?
Sue

Thank you Sue. I was using an Aerobika and saline nebulizer. I saw no difference at all, so doc said to stop if I want. What are your thoughts?