Managing MAC without antibiotics

Posted by desperada @desperada, Aug 16, 2018

I have just been diagnosed with MAC and Bronchiectasis. I am already mostly deaf in one ear with RAGING tinnitus, I am plagued daily with horrific headaches, I have fibromyalgia, stenosis in the neck and spine and have vision problems. I also have anxiety disorder. I have had C-Diff four times from antibiotics, so my gut is pretty much ruined. EVERY SINGLE DAY is rife with suffering. I am not going to add suffering from these antibiotics that will be exacerbating every single affliction I have to the point of being totally intolerable. Taking these antibiotics scares me to death! The only thing that has stopped my trembling is the decision just to opt not take them. and believe me, the Pulmonologist just gave me brutal hell over MY decision. He was just mean, and I was crying more over his attitude, than having the actual sickness.
My husband just passed away in November, and we had no children. I haven't even finished dealing with his death, I'm still in bereavement therapy, and now i find myself having to plan for mine!
I am not willing to suffer the side effects of these totally toxic antibiotics. I have had a pretty good life. I am 71. No one lives forever.
I am really at peace and content to just enjoy the days I have, and I feel relieved I can just plan to get myself into Assisted Living and let things run their course.
I am totally fed up with the horrible care and berating I'm getting from my doctors with the exception of my PCP. I live in an area where the health care is not that great, and everyone just kind of gets by.
I am using CBD edibles and they actually suppress my coughing and keep me relaxed without being impaired.
My disease right now is not that debilitating, but I know that will be changing.
The thing I am finding out is that there is absolutely no predictability. No one knows how the disease progresses - each person is different. Not everyone "tolerates" the antibiotics, and not everyone has a positive outcome with them.
I have two little dogs - I walk them EVERY day - no matter how I feel. And it takes "activity" just taking care of myself on a daily basis.
I have never been a martyr. This is not a fight I want to participate in.
My support is practically nothing - I have to do the best I can completely on my own.
There are so many, many brave, driven people sharing their experiences here and I take huge comfort knowing this disease is not just mine and I am not being victimized or punished nor the only one going through this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@karissy

I to have refused the treatment due to the side effects. I do know someone that did do the 3 antibiotics which destroyed her kidneys. Life is to short when you are up there in age just like me. I am 71. Don’t need more problems when I am in good health otherwise. Even my ID doctor said he would rather not treat me. He said if I was younger maybe. He has quite a few patients with MAC who have gone 20 years plus without taking the treatment. So I will take my chance. I walk 5 miles every morning, do my vest, drink a lot of water and do huff coughing. Never have been able to cough up mucus. Doctor said that can happen not everyone will cough it up.Could do more damage by trying to force it. Was diagnosed in 2021 and so far CT scan has only changed for the better. I’m not bragging because I am aware things can change but these are the chances I am willing to take.

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Hi there do you have bronchi Éxtasis also

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Hi desperada. I see your post is from 2018 but maybe you are still reading these posts… I very carefully read your post And sure would love to talk to you and/or communicate.
I have btonciectasis and mac. Diagnosed this past year. My pulmonary put me on ethambutol and azithromycin. . The first couple weeks I really didn’t feel anything but now my ears hurt inside and they are ringing nonstop. I have some other health issues like fibromyalgia, costochondritis, burning tongue that I developed a year ago and they don’t know what to do for it, and I am very very worried about these antibiotics as I am super sensitive to medicines. I am filled with anxiety about the thought of having to take them for a year or more and then there isn’t a guarantee The medicine will get rid of it. If you are up to it would you be willing to chat with me. I have no support… It’s a very lonely journey. I am 73… I live in Georgia. Anything you have to say would be welcomed thank you… Bon I had C diff also...

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71 is young! You have good years ahead and walking the dogs is keeping you active, which is great. You will make new friends in assisted living and perhaps your PCP will be your advocate with the pulmonologist. Find out about air way clearance strategies that will help and there is a lot of info on this site to help. You can live with this!❤

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@megan123

@desperado...hi there...am so sorry to hear that you are carrying so much....I must tell you though, I was scared to death to start the big 3 antibiotics, but after some side effects the first 6 weeks, everything went away....I waited as long as I could before starting them.....sometimes they only want u to take them 3 times a week...walking as often as you can helps with anxiety and depression as well.

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Hi Jennifer,

How are you feeling now?

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@healthybon

Hi desperada. I see your post is from 2018 but maybe you are still reading these posts… I very carefully read your post And sure would love to talk to you and/or communicate.
I have btonciectasis and mac. Diagnosed this past year. My pulmonary put me on ethambutol and azithromycin. . The first couple weeks I really didn’t feel anything but now my ears hurt inside and they are ringing nonstop. I have some other health issues like fibromyalgia, costochondritis, burning tongue that I developed a year ago and they don’t know what to do for it, and I am very very worried about these antibiotics as I am super sensitive to medicines. I am filled with anxiety about the thought of having to take them for a year or more and then there isn’t a guarantee The medicine will get rid of it. If you are up to it would you be willing to chat with me. I have no support… It’s a very lonely journey. I am 73… I live in Georgia. Anything you have to say would be welcomed thank you… Bon I had C diff also...

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Hi Healthybon,

How are you feeling?

I hope things are better for you know. I got diagnosed to Mac over a year ago. Have not started the Meds yet. ❤️

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