New to MAC and considering treatments options: What did you do?

My first doctor I had after my MAC diagnosis was very rude, short tempered and had zero bed side manner. I stayed with him for about a year, as I thought he was otherwise a good doctor. I was prescribed a number of powerful antibiotics for about nine months. They were making little difference in the MAC, but were becoming fairly toxic to me. He seemed to get tired of finding a workable solution for me, so he suggested I see experts at a teaching hospital out of town. I found them to be much more respectful and knowledgeable about my condition. They took me off all the antibiotics and saw me every three months for a year. They did scans to check on the progress of the disease. I saw them for the next four plus years, every six months. I now see someone back in my hometown. I find him to be compassionate, knowledgeable and respectful. Keep looking for a good doctor who will pay attention to you and respect you as a person who happens to have MAC. Good luck. I use a Nebulizer once or twice a day, which seems to help a great deal. My condition has improved.

So happy to hear it’s going well for you. Sorry about that doctor you were with for a year.
Can someone please tell me - can a saline nebulizer alone (or the type mentioned in previous comment) do anything to cure the MAC existing in my lungs? I have both bronchiectasis and MAC - diagnosed 2 years ago - and have not been on any meds thus far (my choice).

I would hesitate to say that 7% saline, or anything else, will cure MAC - not even 18 months of antibiotics managed to do that for me.

What has worked is that 7% saline plus daily airway clearance has MAINTAINED me after quitting the drugs, and according to my last CT scan, maybe even improved things a little. Others here have had the same experience - @thumperguy @becleartoday @nanette @cila - and may like to comment.

If you have not tried it, it might be an option for you, as long as your MAC has not progressed to form cavities in your lungs. What are your symptoms at this point? Is the doctor suggesting you start antibiotic therapy?
Sue

I was diagnosed Feb 2020. The first 2 pulmonologists I saw didn’t want to do any thing not even airway clearance. A third doctor, NTM specialist, wanted to wait and watch, but started me on dry airway clearance, ie. without saline. Still no sputum production. My CT imaging revealed progression of the infection. When I discovered National Jewish Health online, I made an appointment to fly to Denver and be properly assessed by them. It was the BEST move I made after a year and a half. They taught me how to properly do airway clearance with Albuterol and 7%saline in addition to many other things. It was not until then that I was able to produce sputum and had several specimens cultured. After 3 months of twice daily airway clearance, the sputum culture was still positive with no reduction in colony count. Then, the pulmonologist I saw back in March at NJH decided that it was time to consider the 3 antibiotics and find an NTM specialist locally to follow up with and order the Vest to improve on sputum production. I found a doctor at a medical university NTM center who ordered the Vest and offered me to join one of two clinical trials for patients with NTM. I chose the 2 vs. 3 antibiotics. My randomized selection put me in the 3 group. So, now, I’m on Azithromycin, Ethambutol and Rifampin. The delay in starting treatment was partly because of my fear of severe side effects. Eventually, I convinced myself that treatment now is better than in a year or two. We don’t know what the future may bring us. Why delay the inevitable? The only side effect I have had was some intestinal cramping the first week only on the days I took the meds, MWF. Now, It hasn’t been a month yet, but I’m glad I started the treatment.
Meanwhile, I continue to do airway clearance twice daily with the Vest. Aerobic exercising, 30-60 min, is another daily routine. Moreover, I have installed a special water filter AquaMedix (0.2 micron) in my shower and bathroom sink. My drinking water is either boiled for 10 minutes, bottled spring water or filtered through LifeStraw filter. I use these 3 drinking waters to wash my fruits and vegetables unless I’m cooking them. I don’t garden anymore, but if I have to help any, I wear a mask. I take my water with me to restaurants and only order cooked vegetables. These are extra precautions I’m taking to hopefully reduce my exposure to MAC. Time will tell if they are the right thing to do to stop the infection from recurring.
I know some people have managed to be free of NTM for years after multi-antibiotics treatment, but don’t know if they went the extra mile to achieve that.
Would love to hear other people’s precautionary measures to stay clear of their NTM.

I recently signed up to participate in the brensocatib trial at a facility in Salt Lake City, but was informed today (less than one week before my appointment) that I would have to provide 5ml sample of sputum (without the help of inhaling saline) to qualify for the trial. I know from past experience that I cannot produce sputum without the help of inhaled saline, and my pulmonologist has resorted twice to my having a bronchoscopy to get a sputum sample from me.

I was told by the coordinator for the research facility that this requirement is the main reason so many people don't qualify for the drug trial.

Has anyone else experienced this?

Alice

Can someone please recommend the best nebulizer for abeutirol and the saline solution?

Hello Sally, there is no correct answer to this question. Lifestyle, budget and personal preference play a role.
If you are a homebody, the good old Pari Dios tabletop compressor machine, about the size of a tissue box, is a very durable and inexpensive choice. It is also the primary machine paid for by Medicare and some health insurance policies. The downside is that it is somewhat loud, and takes about 20 minutes for each 4ml vial of solution.

If you need a more portable Unit, there a a number of smaller, lighter compressor machines, some that can run on battery or cigarette lighter. These are quieter, but tend not to as durable and usually not covered by Medicare.

If you want fast, quiet, and no tubing, there are impeller run machines, battery operated. You inhale directly through an attached mouthpiece. These vary widely in durability and cost and are only covered by insurance for a few specific inhaled medications.

If you need something highly portable, this is the obvious choice.

The best way to find out what you like, try to get an appointment with a respiratory therapist to test a few machines.

I think this is a very individual choice. I like the Philips InnoSpire Go, but it only lasts me a year or so. The Pari can run for several years.

Sue

Thank you, Sue for all the good information!

Pari Vios compressor and Sprint nebulizer cup. AeroEclipse XL with Ombra compressor. Two options recommended (as well as the portable options Sue listed).

A reminder

Free and for everyone

Cindy