Anyone have cavitary MAC?

@ina - If I remember correctly from earlier posts, you have trouble with the Big 3 antibiotics. That makes treatment of MAC more difficult for the doctors. Cavitary MAC is an indication of deeply seated infection, the hardest kind to treat.

If the pulmonologist has not already done so, they should be consulting with an Infectious Disease doctor to determine the next steps for you.

You might need to become an assertive patient, and get involved in your treatment decisions. Have you considered consulting at one of the centers that specialize in MAC like Mayo Rochester or National Jewish Health?
Sue

Hi.
Well, I have cavities in my lungs. I have stage 4 pulmonary sarcoidosis (which means that my lungs will not recover. I had MAC abscessus years ago. My lungs were in pretty bad shape by the time I noticed a problem with my breathing. Doctors were amazing.
A recent sputum sample revealed a different MAC strain. I did a repeat sputum test and results are not in yet to confirm. I'm doing well. My sarcoidosis is in remission.
If you have cavities in your lungs I recommend that you take it seriously and follow your physicians recommendation for treatment. Medicines, nebulizers, whatever.
How is your breathing? Your energy level?

I was diagnosed with cavitary MAC last year and was set to have surgery at the Mayo Clinic in Rochester. During a pre-op it was discovered that the cavity had collapsed and surgery was no longer necessary. Everyone on this thread has great information. Consider a infectious disease doctor and follow through. Good luck and recovery to you.

What did you do for treatment between the time you were diagnosed and when they discovered the cavity had collapsed?

Is it good for the cavity to collapse? I do not have a cavity but just trying to get as much info as I can. I have had bronchiectasis for 15 years and my breathing is getting worse. On oxygen 24/7.

Purely anecdotal but I stopped nebulizing and only used a Nevelers dry salt inhaler.

Thank you for the response. I too have been diagnosed with a cavity and prescribed the standard 3 antibiotics but have chosen to try a non-traditional approach utilizing applied kinesiology and low level lazer therapy. Will have a follow up ctscan in Feb to see how it all plays out. Exited to hear of your sucess. Thank you for sharing.

I also used a UV light wand over the lobe where the cavity was detected. Again, purely anecdotal. As I was studying for my AAS in Eastern and Western Bodywork I learned in Traditional Chinese medicine that the “disharmony” of the lungs is Grief. They say when grief is not expressed outwardly that we “cry into our lungs” creating infections and disease. Grief has been front and center in my life and this is something that I am trying to help myself express more openly- to let myself go through the process. Anyway, lots of fascinating things about our bodies. They are miraculous, in my opinion. Again, best of luck with your chosen treatments.

Hi all, I merged this discussion into an existing discussion about Cavitary MAC.
- Anyone have cavitary MAC? https://connect.mayoclinic.org/discussion/cavitary-mac/

As @sueinmn mentioned, cavitary MAC indicates deep infection and difficult to treat. That can lead people to seek all options.

When considering complementary or supplemental treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. I usually turn to NIH's National Center for Complementary and Integrated Medicine (NCCIH) website https://nccih.nih.gov/

In the section "Health Topics A-Z" current therapies and conditions are listed explaining the most recent evidence, cautions and potential of future studies.

It's also important to never disregard professional medical advice or delay in seeking it because of something you have read on the community. See the full Disclaimer (https://connect.mayoclinic.org/disclaimer/).

Mayo Clinic and many large medical centers support integrative medicine (also known as complementary medicine) and offer evidence-based approaches. If you would like to consider integrative approaches, talk to your doctor to work with you to get the best out of both traditional and complementary therapies.

Here's more info about Mayo Clinic's
- Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

I have cavitary MAC with bronchiectasis. You are so very lucky you do not have bronchiectasis. Coughing is likely a good thing if it's productive; clearing things out. I thought most if not all who had MAC also had bronchiectasis. I guess I had that wrong.