Originally Posted by Nu2This
Was taken off all antibiotics in Sept. This was second time this has been done (different meds used each time). Saw ID doctor this week and he doesn't want to attempt any further antibiotics because of my extreme reactions to all he's tried. He says the treatment is worse than the disease in my case and he has referred me back to my pulmonary doctor. Have appt. with him in couple of weeks. My question for some of you who may have also been through this - What happens if this disease is not treated by antibiotics? Just wait to see what course the disease takes? I still have the shortness of breath, cough, chest pain (also have bronchiectasis and COPD), night sweats, and EXTREME tiredness. Thanks for any input/suggestions and hope all of you are doing well.
I had MAC back in 2007, and was on rifamin, ethambutal, and xythromycin(sp) for a year and a half. The total daily dosage of the combined drugs was 2600mg. I took probiotics every day, and took the meds with the lowest dosage in the morning with breakfast, usually a pancake. The second largest dosage, I took when I ate what I would call at the time, my main meal. My appetite was not good, so I ate what sounded good to me and stayed down. The largest dosage, I took at bedtime. I also had a xanax 0.5mg. that I took at bedtime. Sometimes it helped. I didn't take any medication on Sunday. Then on Monday, I started all over again. I felt real bad the first 3 months, but then the night sweats began to dissappear, and although my appetite continued to be not so great, I started to feel better and was able to do more than just move from the couch to the bed and back again. My pulmonary Dr. was supportive in all of my decisions as to how and when to take my meds. You may have to take them only three times a week, and take them for a longer period of time, but you need to be on some sort of antibiotic therapy, because the MAC will continue to grow and take over your healthy lung tissue. I found what worked for me by trial and error. I hope this helps you some. By the way, I was 65 when diagnosed. I have been MAC free for 4 years. Good luck and God Bless. I'll keep you in my prayers. Peggy