← Return to Natural remedies for MAC
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Replies to "Hi, new to this group but was diagnosed a year and 2 months ago with Bronchiectasis..."
Malambrit, do you still go to Mayo and do you have an assigned doctor there? I think usually after 6 months not converting, the doctors add or change meds. I would suggest contact Mayo through email, if they gave you your medications and ask how to proceed. I don’t know what state you live in so also look around in your state or around. I know it’s frustrating, not easy when you are tired, and wish your day ended at 6pm and you could sleep, if you can.
I was on big three for two years. Mine was resistant to the azithromycin. I was so distraught. Went to national Jewish health center in Denver. I am on amikacin infusions and 4 oral antibiotics. Hope you get better results
I am too new to give you much advice but reading your post did flag, to me, 10 Acres, animals and gardening. Have you been told or read about how, when and where we possibly get infected? Have you tried wearing an N95 Mask while doing chores with all you have to do on the 10 acres? I take it the 90/10 refers to wine? Personally, you might reconsider that. I know that possibility is a downer having to possibly eliminate that. We all here on Mayo have had to give up much to help ourselves. Maybe others on Mayo will be best to hear from with regard to the wine. I'm not a wine drinker and if I had been...for me, I'd grudgingly would give it up except for a special blue moon event.
We are about even with the time factor of how long we have known that we have BE/MAC/MAI.
It took me, and I am still trying to 'perfect' airway clearance with ACT and Postural Drainage etc. etc. after finally learning about it and fully understanding it after much reading and research.
I was asked to start the antibiotics but decided against them due to all I gave thought to, for me. I do not feel unwell and have not had all the symptoms for an exacerbation or having had an exacerbation. My main problem is continuous need to clear the phlegm/sputum from my throat and that can also possibly be related to my having a hiatal hernia or possible GERD. I do release mucus plugs when I clear the phlegm/sputum from my throat and mostly late afternoon, early evening. I use a clear solo cup so that I can see what I am bringing up and easily see any mucus, mucus plugs or moisture. I clean and rinse the cup(s) with dish detergent, water and a jar brush.
Have you read about shower head maintenance cleaning or replacing? Have you read about what might be in the hot water aerosols when showering, and why we need to do maintenance cleaning or replacing the shower head or keeping the hot water tank above 130 135 degrees?
Much of what I am asking can be answered by reading other 'threads' on this Mayo Clinic Connect.
I learned of my BE via my PCP ordering a no contrast C Scan 8/2022. I also did not know I had MAI until I went up to National Jewish in Denver in 10/2023.
This is a tough journey to begin with and takes much time in the beginning to understand, it was/is for me.
Hope your day goes well and you motivate yourself to do right by yourself today and going forward. You can do it!!
Barbara