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MAC and COPD love to trade info
Hi I'm new to the group. I'm almost 60 with COPD and have been asking for the last 6 years why my equilibrium has been so bad,weight loss ,fatigue, brain fog. I had a couple of bad falls January 2025. Finally went to ER. Fractured sacrum and put me in quarantine for 6 days for TB testing. End result MAC disease . I'm 5"8 and went down to 80 lbs. 58%lung capacity in left lung. Personal issues kept me from starting treatment. April of this year my lung is now at 23 % but I've gotten my weight up to 117. Started the 3 on June 10 and IV antibiotics. Ethambutol ,Rimapin ,Azithromcyin and Amikacin IV. Dr. Said 8 weeks of IV and 2-3 years of the 3 since I waited so long to start treatment. I have started probiotics so I will hopefully not get diaharrea as bad as I did last year while in hospital. No serious problems yet but it is slowly starting. I'm now getting nauseous after every meal and the bathroom stuff is starting. Any advice from the group to help me get through this would be great. I also wasn't sure if I wanted to start treatment. But I didnt have a stable home after my husband left to start treatment either. I'm now staying with son and his wife ( she is a RN )and 3 kids . I didn't realize it would get this bad so quick. Now I'm going to try and beat this thing. Or at least good enough to live without feeling like I'm going to passout all the time. Thank you for listening I've joined this group for some support and hope I can share my experience to help others if I can.
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@kimmiek I think you will find the support you are looking for in this group. I have found everyone to be helpful and caring and it is so great to be able to share things with others who understand because they have the same disease. You will find lots of info and suggestions to help along the journey. I am 65 and also have COPD and MAC. Are you taking your probiotic at least 4 hours outside of any of the antibiotics? That is important, otherwise the antibiotic will destroy the good bacteria in the probiotic. Azithromycin & Ethambutol can be taken with food, which can helps to alleviate nausea. Rifampin should be taken on an empty stomach (1 hr before or 2hrs after a meal) so I found evenings good for that one, to sleep through any nausea. I am glad you have your son and his family for help and support. Wishing you the best, I will include you in my prayers.
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4 ReactionsYes I time the yogurt in-between pills and Rifampin I take first thing in morning. IV at 1 pm and the other 2 before bed . So I can try and miss the nausea. IV I have to do at that time. Have to go to ID clinic once a week for blood work as soon as I finish IV . I'm taking all of these daily. Dr. said 8 weeks for IV and probably 3 years for the other. Disease is progressing quickly. Thank you for your reply. I scheduled my medicine after ready other patients info on here. It has helped alot.