MAC: Just how well do nebs work, anyway?

I use an Aerobika Positive Airway Pressure device after I neb, which vibrates the lungs on exhalation to further loosen the mucus. Then I "huff cough" and the mucus just comes out... I tried postural drainage, but due didn't find it helped me.
Do you neb 7% saline and/or any other solution?
Sue

I have history of hemoptysis so 3% give me hemoptysis, I am now combining 3% and .9% comes out as 2.7 %. I will increase the % gradually, so I hope I can do 7% several months later.
Thanks

Can one get rid of MAC by just doing good airway clearance, or do you need to take the antibiotics?

Here comes the dreaded answer - It depends.

Due to side effects, I had to stop antibiotics after 19 months while still having MAC-positive cultures, but CT signs of improvement and I had less symptoms. I immediately transitioned to 7% saline nebs along with levalbuterol and/or duoneb as needed for other symptoms, with airway clearance.

I have stayed asymptomatic for 22 months, except one small flare managed with additional nebs and a course of prednisone. In July, my CT scan showed no change from December 2019, but I have not had another sputum culture, and will not unless I become symptomatic. Some other people with low colony counts of MAC or with no tolerance for the antibiotics have had similar experiences. Still others have had increasing colony counts, or symptoms, and had to use antibiotics.

All that said, we NEVER say we have "gotten rid of MAC" - only knocked it down to the point we can monitor it and live with it - most people will have more than one bout, whether or not they use antibiotics.

So what is the takeaway? If you don't have serious active symptoms like fever, weight loss, unstoppable cough, shortness of breath, the CT scan doesn't show cavities or nodules in your lungs, and you have a moderate colony count of MAC, but not an aggressive form like M.abscessus, you might be a candidate for conservative treatment with aggressive airway clearance, 7% saline, al healthy diet and close monitoring.

Find a doctor - pulmonologist or infectious disease - experienced in managing MAC and bronchiectasis - to evaluate your own situation.

What has been your experience so far?
Sue

What do nodules in lungs with MAC indicate?

Same as you Sue. When ole 7% rode into town flare ups vamoosed. Don

Pipe in hand.. just an update on my experience. Still doing 3% saline nebs as prescribed by infectious disease doctor.. about a year. Will do a repeat ct.next week. So far 3 have shown positive bronchiectisis and tree in bud nodules. Have Mac from sputum cultures. Will start antibiotic therapy if no improvement. Working on doing reflux prevention care ( have a swallow study and egd planned). This past summer had a pseudomonas exacerbation and covid (so definitely staying away from gardening). Managed to get back to baseline (sort of). Y’all have helped me to understand this chronic disease and know it is “doable”. Thank you.

What you are doing may make perfect sense…but so you will know my experience, I had regular hemoptysis for over 3 yrs. I started nebulizing with 3% saline about 16 months ago. The hemoptysis became even more regular. I asked for 7% saline (mixed the 2 at first) & after several months the hemoptysis stopped. It’s now been about 5 months. The only change I made (I am quite active) was “upgrading” to 7%. I do exactly what Sue does for airway clearance. Take care.

Thank you, Sue, for recapping this. I finally got my nebulizer this summer and was going to begin but then my husband got very sick (non lung related) and so I put it off once again. After my campfire incident today I thought I better reprioritize this so your response here was very timely. I am sure as I get it set up I will have many questions! My doctor is starting me on .9%. How long should I do that before asking for the 3%? She is not experienced with MAC or Bronchiectasis but is very supportive of my requests to try things.

Can I ask, I have seen mentions of avoiding gardening here a number of times. What are the risks of gardening? I find gardening and working outside to be my best therapy and so I have largely avoiding researching this question. I also have chickens so I work with straw and manure as well as dirt. Is the risk something in digging in the dirt? Digging is the one thing I delegrate to others.