To start or not to start the antibiotics?

My original pulmonologist knew very very little about Mac when I was first diagnosed through a bronchoscopy cleaning.....
He told me not to nebulize, that it could make it worse. Good thing I had been reading this wonderful blog and learned about airway clearance and ignored his suggestions.......
That was many months ago and I have been nebulizing for months and months with 7% saline...I"m lucky that I can get quite a lot of clear sputum up each time. I can only imagine the accumulation of gunk that would have built up if I had listened to them. He should have googled it before giving me such dire directions......shame on him. WE MUST be our own advocate and investigate and ask questions...all pulmonaries are not experts on MAC....in fact most are not.

My original pulmonologist didn’t do anything for me either.. he just told me I have bronchiectasis and to schedule another CT in a year. Something was nagging me to get a second opinion so I found a wonderful pulmonologist who felt I should have a bronchoscopy and that is when they found MAC. Yes, we must take control of our own health and listen to our gut. I’m so glad I found this group too, I had no idea airway clearance was important. I have been doing it twice a day for about 20 minutes. I haven’t coughed up any sputum though. My doctor started me with 3%, maybe I need 7%. I’ll ask her after I’m done with the box of 3%.

My pulmonologist put me on 3% three years ago when I was first diagnosed. It was thru this site that I learned about 7% - a huge difference!!!!! As soon as I am done with nebulizing I begin to cough up clobs of mucous. I use 7% in the morning and 3% in the evening as coughing after 7% interferes with my sleep. I asked my pulmonologist about 7% and he said he had no problem with ordering it. Saline has no medication in it so insurance and Medicare will not pay for it. It is relatively cheap and my daughter who has been an RN for 30+ years told me that no prescription is required. MAC is rare and I 100% agree that no pulmonologist is an expert and they would learn a lot if they listened to those of us who have lived with it for some time.

I was not forewarned about the side effects of the big 3 antibiotics. If I had been I would have gotten a baseline hearing and vision tests. Our optamologist knew which one affects sight and while my sight has been slightly affected my hearing has taken a huge hit due to Azithromycin. I have decided to stop the meds and concentrate on airway clearance. Quality of life is important!

Dlynn, where are you located? Every pulminologist I know certainly is aware of the guidelines for Azithromycin, Ethambutol & Rifampin that includes regular vision and hearing testing. Your Dr is borderline malpractice if they did not order the tests. Find another pulminologist.

I didn’t know I could get 7% without a prescription. The box for my 3% saline says “RX Only”. I thought my insurance didn’t pay for it, but when I looked at the claim again, they did pay for some of it. Interesting.

Seminole FL and the pulmonologist is in Largo, FL He has referred me to another pulmonologist in Tampa - 3 years too late.

I have some of the 3% left and the box does say Rx only but my daughter who has been an RN for 32 years told me “You don’t need a prescription.” It is also larger vials (15 ml) than I need (4 ml) and indicates once top is off it is no longer sterile. They live in TN on a mountain top so if one of then gets sick it may not be easy to get to a hospital so she has a nebulizer with saline just in case one of them gets sick/congested. There is no medication in saline so why would insurance or Medicare pay for it? My pulmonologist told me saline is hard to get ever since the pandemic. That I can believe.

The 7% comes in 5 ml vials which works for one time with none left over. We got the 3% vials from CVS last year.