MAC: Anyone ever felt pain from MAC? So many questions

I had chest pain and both my pulmonologist and infectious disease docs told me the pain wasn’t from my lung issues. I don’t have those docs anymore since they really didn’t give me the correct information about many things. Thankful to this sight to make me question what I was told and get a dr more qualified to treat Mac and bronchiectasis. Since treatment I don’t have the pain I did previously.

Hello! Does anybody have a recommendation for a follow along video for ACT? I have found written instructions and instructional videos but I am looking for a follow along video (much like an exercise video).
Thank you!

I found these videos to be quite helpful. I hope they help!
https://bronchiectasis.com.au/resources/airway-clearance-videos

Thank you very much! xo

Hi Jennifer,
I was diagnosed with MAC about 3 years ago. I have not experienced any pain. I also have bronchiectasis (BE) which causes mucus to accumulate in my lungs. I do not know if you have BE but research indicates that MAC infection is more frequent for those with BE, so you might want to consider asking your provider to check you for bronchiectasis. That being said, what I have found to be incredibly helpful is nebulizing with 7% hypertonic saline. Research indicates that saline provides an uncomfortable environment for the MAC bacteria to thrive. It slows it down. And, for me, thank goodness, I've been holding steady without any antibiotics. When I nebulize with the saline daily, it helps me to cough up mucus. Mucus is what we want to get rid of because bacteria thrive in the stuff. Airway clearance (home techniques to clear mucus) is very important as well. I learned an infinite amount from this group. Information my doctor never provided to me...not out of malice but because a lot of drs are not that familiar with MAC and they may tend to go for the "big guns" i.e. antibiotics because of their limited experience with this condition (just my opinion). If you have other questions please reach out. I wish you the best of luck.

The doctor knows. Part of my Sarcoidosis I assume

Hi Gina,

How are you feeling now? Is your Mac gone based on your treatment?

I got diagnosed to Mac over a year ago.

Thank you,

Suzanne

I was referred to pain management Dr yesterday for the back pain and pain where the cavities are

Hi Renee, Are you seeing a medication-oriented doc, or a pain management practice that will incorporate many tools in your pain control "arsenal"? There is a huge difference.
I was seen in a pain rehab practice for chronic pain related to years of coughing (bronchiectasis, asthma and MAC) as well as arthritis, hyper-reaction to painful stimulus and a host of other issues. Management consists of a combination of strategies - visualization, relaxation, acceptance, stretching, exercise, massage and myofascial release, rest and counselling, along with medication management (of all meds). It has been a journey, but I do well now as long as I don't pretend to be the "energizer bunny."
Good luck working your way back to a more normal you - like living with bronchiectasis, it is a process and you are the main one doing the day-to-day work.
Sue

Hi Arlo,

I was diagnosed with MAC in Sept of 23. Have not started with any meds yet. Can you tell me what you do to do airway clearance? It sounds like nebulizing and airway clearance are two different things that you do, is that correct? Right now I am experiencing pain in my upper back which I think may be due to MAC, I see the Dr. next week. Thank you.