New MAC treatment options??

@sueinmn
Hello Sue, I hope you're still doing well and enjoying another beautiful Spring.
I was diagnosed with MAC in January of the current year with a co-diagnosis of Bronchiectasis after having been treated for pneumonia over the course of the previous 6 months. I've been on the Etibi, Rofact and Azithromycin regimen for 3 months and many days feel as though I'm getting weaker.
My question is: Is it a helpful to nebulize at the same time as taking these meds? I'm not confident how helpful my doctors (GP, Infec Disease, and Pulm) will be if I ask them.
Many thanks
Susan C.

Thanks so much for responding so quickly, Sue.

In answer to your question the Infectious Disease Specialist has advised me about the airway clearance procedures which I've been doing daily. So far I haven't asked about nebulizing normal saline but I don't imagine that would be a problem. The pulmonologist I only met once and that was for 2 minutes before he did the broncoscophy in January. He called a week or so later to tell me about the MAC and referred me to Infec. Dis. I had a ct-scan in Dec. and was told by my GP I have bronchiectasis. I don't think I really understood what that meant until I searched online. By then I'd met with Infec. Dis. and the treatment for MAC was ordered along with monthly sputum cultures, hematology, ECG, PFTs, and the first of 3 month appointments with an opthalmologist.

I am generally feeling better but I'm still coughing up phlegm, as well as having painful dry coughing fits that wake me up. There are headaches, extreme fatigue, and my voice is raspy. The meds have been cut back from daily to twice as much three times weekly. The Infec. Dis. doctor told me last week the cultures have showed no growth.

My husband, who does have COPD, is wondering why I still have the dry cough. We're going to see our family doctor on May 5th who, hopefully, will be able to explain.

I apologize for taking up so much of your time but I was so happy to find a clinic support group. No one else I know has ever heard of either condition.
With best wishes,
Susan

@suzanc Susan, I wish we had a nickel for every time someone on Mayo Connect has posted "No one else I know has ever heard of either condition."

It sounds to me like you have a good ID doc, but the pulmonologist is not fully "engaged" in your care. Perhaps you can look at this list and find someone who specializes in MAC near you:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Or ask the ID doc for a recommendation to someone more familiar with this disease.

Please not - this is not an indictment of the current doc - most see very few cases in their practice, and are not necessarily up-to-date on treatment protocols.

@sueinmn
Good morning, Sue
You're likely right about the Pulmonologist not being familiar with MAC or maybe I haven't been as proactive as I could have been. I think we'll wait to talk with our GP on Friday.
Since we live in Victoria, BC we don't have much choice in specialists.
Thanks again,
Susan

@sueinmn
Good morning, Sue
You're likely right about the Pulmonologist not being familiar with MAC or maybe I haven't been as proactive as I could have been. I think we'll wait to talk with our GP on Friday.
Since we live in Victoria, BC we don't have much choice in specialists.
Thanks again,
Susan

@susiespencer When you ask about treatment for your infection, have you had a recent CT scan of your lungs? Some people are are to "push back" the infection, for lack of a better term using rigorous, twice a day airway clearance with 7% saline solution, and avoid antibiotics.

When I was treated for MAC, after over 18 months, including six months of daily meds, I like you was very sick and quite depressed from the regimen. But, I still had the infection. At that point, 7% saline was becoming more commonly used, so I stopped antibiotics and increased my airway clearance routine with 7% saline to 3X/day - that was still too much, so backed off to twice a day and I gradually got better - regained energy, cough improved and I gained back some lost weight. My lungs had improved even without antibiotics - shrunken nodules and less cough, no MAC growing in the AFB test. After a year and a half, I felt quite well, but still short of breath, so with my pulmonologist began strategies to improve my asthma.

Now 5 years and 4 months later, my bronchiectasis and asthma are stable, I have no new nodules, just scars from a long bout, and I have been "living dangerously" for 4 months, with the doctor's approval - asthma meds, exercise, daily airway clearance and no nebs unless I get a respiratory bug.

Have you been taught airway clearance techniques, and do you use saline to help control the infection?

@suzanc
I was diagnosed with MAC and bronchiectasis about 3 years ago, it was uncovered by an MRI for another issue. I was referred to a pulmonologist in the Chicago area who was OK, treated MAC for about 10 patients. I found this support group, did some research and was able to find a pulmonologist at the Mayo Clinic in Rochester Minnesota, Dr Sarah Chalmers who is excellent. What I found most impressive is the skill she has in evaluating my CT scans. Not all pulmonologists are the same!! Seek out an expert. Right now I’m in a watch and wait period where I haven’t tried antibiotics. Nebulizing with 7% saline twice a day is key.
As we all know , this disease requires individual treatment, and the doctors you choose are most important.
Take care, Lorraine

@suzanc I grew up in Victoria. But live in edm now. Have a great inf disease guy here and a good pulmonologist.
I have a person my mom knows that also has MAC and BE and lives in Vic. She says her specialists are also not great.
Just wanted to say hello.