Natural remedies for MAC

Thank you for the information.

When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. Keep in mind that natural substances can also have toxicities, adverse side effects and treatment interactions. Supplements are not regulated and can be marketed without rigorous clinical testing.

It's so important to do your research, check for FDA warnings, etc. as you all have done. All information shared by members on the Mayo Clinic Connect, such as messages, images, advice, URLs, and any other material, is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

You better move anyway! If you can't run, WALK! Your Dr. is correct. When you just can't move your body any more practice deep breathing exercises. Rest for a day then hit it again. I don't care how tired you are , get up and move. Even if a little bit. My experience is you will have more energy after a little bit of moving.You probably know this from experience. Just when you are getting ready to cross that finish line you get renewed energy. Use your mind to overcome the fatigue. Wash a load of clothes, do the dishes, weed the garden . . . . just move. Anything will help. You can do this especially if you are a former runner! Now you are a regular walker! It can be just as good and won't ruin your joints as you grow older. Don't give in. It will never get easier but learn to enjoy every minute. I am 68 and have dealt with this crap for the last 12 years. I still love my life and refuse to let it win. So I move.

Thank you so much for the encouragement!!
So nice to talk to someone who knows!
I am 68 also and was diagnosed two years ago, although I have had it longer.
I was an athlete before and this diagnosis/disease has been quite a challenge for me!

Congratulations!
Do you feel better?
I would think so.
I have great fatigue -
Nodular MAC/Bronchiectasis

Hi, new to this group but was diagnosed a year and 2 months ago with Bronchiectasis and MAC. March will be 1 full year on the 3 antibiotic cocktail and I received my most resent result with MAC positive this morning. I am so discouraged. I haven't had any "bad" side effects from the drugs. It was about 9 months in before I found out about airway clearance. I did go to The Mayo for testing in December but my local Pulmonologist has left the hospital and there isn't a local replacement and I haven't been referred to a near by Dr. at this point. I do have a local IDD. It has been a frustrating journey. Until the Mayo, when I went to appts, no one listened to my lungs, did pulmonary function test... I am 59, work out regular but this has been more challenging, mostly due to being tired and if I'm honest, a lack of motivation. I eat very clean 90/10, I do enjoy wine and buy European wine to avoid added toxins. I bought a life straw water filter, change out tooth brush regular.... I live on 10 acres, have animals, garden.
I take supplements and provided list with all drs I have seen. I have started taking Oregano oil as well. Has anyone in this group been on the Big 3 for a year and still not cleared the infection? I am considering stopping the treatment for fear of what else is happening to my organs. I really want to live a long, productive life and I am scared and feel like I am on an island by myself.. Sorry for the rambling- My anxiety is over the top today!

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

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 think what malambrit means by 90/10 is that she eats clean and healthy 90% of the time which is remarkable feat. I wish I could say the same about myself.
When I was first diagnosed, my pulmonologist insisted on airway clearance and she sent me to an ID doctor. Both were not specialists in MAC and both wanted me to start antibiotics right away even though I was not symptomatic. The pulmonologist did not do a good job of explaining why I needed to do airway clearance as I was not bringing up anything and I did not feel I had anything to bring up. I complained about having to do the AC to the ID doctor who then said he didn’t think it did anything anyway and as far as he was concerned I didn’t need to do it. Thankfully I didn’t fully abandon airway clearance and stopped going to that ID doctor and made an appointment at NJH. People on this forum helped me realize how important nebulizing 7% saline and airway clearance is to do every day.

Hi Barbara, Thank you for the detailed reply. I am not familiar with MAI. I replaced my very old hot water heater. I don't wear a mask but wet down the soil before working in the garden. The 90/10 is I eat clean 90%. I don't eat processed foods except for very clean protein powder, protein bars. I make sourdough bread and it is white flour, I eat a slice most every day and I have a glass of wine most every night. I have a fairly new shower head but need to do better with cleaning / replacing. I have shortened my showers dramatically which pains me, my shower ritual was a great relaxer for me, an escape of sorts. Like you, I don't really have any symptoms, if I hadn't coughed up blood I would likely never been diagnosed. I really thought after a year of meds, I would have cleared. Thank you again, I pray for your continued strength.