1. < MAC & Bronchiectasis

Treatment??

Posted by Cathln @Cathln, Apr 3, 2018

Hi, I have had MAC for at least 5 years..I also have bronchiectasis for years.. My bronchial tubes bleed on occasion and I am put on antibiotics for infection. Does anyone here have MAC, and has not had any treatment? I am not sick. I have not had ct scan for 2 years. I switched doctors, and feel like I am not any better off than I was with the old doctor. I have lost weight, and I am tired, but my son passed away suddenly, and I can't really cope with the loss. I have had 2 other mycrobacterium, abscessus, and kansasii, so I do now how sick I can get. I had part of right lung removed, and 18 months therapy. I always thought I was so lucky that I didn't have MAC..I saw plenty of women at National Jewish with it. Is treatment always started when MAC is found? My old doctor said it is like "moss on a tree" if it isn't hurting the tree, leave it alone. That is one reason, among many that I left. Sorry this is long. Thanks in advance for taking time and reading it. Cathln.

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Jo Ann K | @jkiemen | Apr 5, 2018
In reply to @irene5 "Losing a child is an unimaginable heartache. Don’t ask yourself why - it will only make..." + (show)
@irene5

Losing a child is an unimaginable heartache. Don’t ask yourself why - it will only make you crazy. I am so very sorry. I agree totally with what others have commented about “to treat or not to treat!” I have been on both of those journeys. What I will say is what my ID doctor told me. Good nutrition and less stress are key. She told me she advises her Aids patients to try guided meditation with the attitude of focusing on that one area of the body (lungs for us) that is diseased and to see it as whole and healthy. It kind of goes back to what I see as mind over matter, but basically our brains are very powerful, and if we can have that kind of focus in a meditative way then we have a chance of healing ourselves. She says it is scientifically based, and I do believe that. I am willing to do anything that will give me more time! God bless you real well. Sending you a hug and prayers.

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I actually wished they would have treated me a bit sooner, sometimes I think it would have been easier to get rid of if less bacteria was allowed to grow and also less changes would have been allowed to take place. I know they don't want you to start then stop and avoid resistance. I was told not to let any MD prescribe Azithromycin and to save that for when I needed it to treat MAC. That way I would not develop resistance. I think everything would depend on how your lungs look on CT

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jmf2023 | @jmf2023 | May 6, 2023

I was just given a referal slip for pulmonary rehabilitation exercises. Except, my doctor had no idea
where I could those services. Does anyone has any idea? Many thanks!

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