Newly diagnosed with MAC and Bronchiectasis. I have questions!

Hi Payette, I too am torn about treatment or no, as I said. I am leaning to no treatment. My hearing keeps getting worse all by itself. The two hearing professionals I see both said consider not doing the treatment. I will not choose two make myself deaf and I will not choose to impair my vision reversible or not. I am studying the breathing techniques and trying to do airway clearance techniques as best as I can--huffing, controlled coughing, gentle pounding of the chest. I am doing interval stationary biking for my lungs, walking at least 3 miles or more a day. Learning how to hock for best results. I am willing to do that and more daily to live as long as I can with the best quality of life possible. Good luck in what ever choice you make. Thank you! keep me posted. Nancy

Walking 3 miles plus stationary bike. That's impressive. Sounds as if you are doing all the right things. I hope they all work together to help you thrive. Live long and prosper!

I too have been diagnosed with MAC (Oct 24) and chose not to do the big 3. I have too many other issues going on (kidney stage 3, stenosis resulting in neuropathy in hands and feet, etc). I am 72 years old and made the decision to do all other methods for air clearance and avoidance of pools, ect. as I do not want to face all the side effects that the big 3 bring on. So far my pulmo and ID doc are OK with my decision. After all it our decision to make. Good luck to you!

You think the way I do. They have just discovered macular in one of my eyes. With the treatment, I could lose my vision and that’s not a risk I wanna take. I know exactly what you mean. Quality of life means a lot. God bless you and I wish you all the best.

I have just discovered a middle way from AI (Claude and ChatGPT). Not medically verified so doctor discussion necessary: less aggressive treatment with only oral drugs. Designed to suppress not cure but should maintain better quality of life. Black box FDA warnings on Amikacin (hearing) and Tigecycline (death) have me scared. Apparently Amikacin can cause hearing loss after treatment is discontinued with no warning signs during treatment. Does anyone want to weigh in on this?

I already had Tinnitus before starting the Amikacin. It did not get worse. I was on Tigecycline for six months. I did not die. It did cause N&V but the prescription for Promethazine handled that. I was told the current thinking is a shorter course of the “Big 3” is now being recommended( no more than twelve weeks)

Hi there, I was diagnosed with NTM when I was 56. I just went with the flow, did what I was told, took the big 3 for 14 months. I did not tolerate them very well but kept going. I asked for my regimen to be reduced to 3 days a week instead of daily meds. Lost a lot of weight, my gut was stripped and I felt ill until I asked to be put on Zofran - made a huge difference. I took 5 months off work but returned to work full time which was probably foolish as I was exhausted. I took 6 months out after I finished treatment and then got a part time job. This has made a huge difference. Everyone tolerates antibiotics differently - I was always sensitive to meds and rarely had to take any. It was discovered that I had underlying bronchiectasis and my MAC has returned. Not happy and my consultant is adopting 'watch and wait' My quality of life has changed, I have aged, look very thin but keep going. No two days are the same. Weather impacts how I feel. 58 now and feel hard done by that something like this has hit me under the age of 60. I have become so anxious, wonder what the future holds. On the whole I am resilient and have wonderful friends and family. Decide what is right for you. I believe in prayer and it keeps me going too as does having a job - I need to have a sense of purpose.

I have hearing loss and vertigo episodes. Amikacin scares me fater reading the fda warnings. Glad you did OK with it. Not sure i want to risk it.

I saw a very informative ID physician for the first time recently. She said, you won’t die from Bronchiectasis and NTM, it will just be a contributing factor. She recommended I stick with UT Tyler because that clinic and NJH are the two top NTM clinics in the U.S. With respect to Bronchiectasis, good airway clearance is key. My twice daily clearance takes approximately one hour each. When I am in our vehicle, I always carry a clean Aerobika.
Don’t be scared of the medications.

Hi Nancy.

Thank you for pointing out the https://bronchiectasis.com.au/ website in your post. I AGREE that is a valuable site full of useful information. It was first recommended to me by a colleague of Dr. McShane's who is currently coordinating my care through UT Tyler and I appreciate you mentioning it here to remind me.

You described the fuzzy video quality using the links from the Australian website, and I know what you mean. I've endured it myself to get the useful information from that site. But I did find a higher resolution copy of Dr. McShane's 90-minute presentation from June 14, 2024 by following a link in the resources section of the NTM Info and Research website at https://ntminfo.org/#

I was able to choose a 720p resolution in setting to watch it and hear it much more clearly at his link: https://www.youtube.com/user/NTMir

There are quite a few other informative videos on that same YouTube "channel".

Take care

Ed