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← Return to Life while being treated
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Interesting that you say you would not go on the big 3 for a second time. My NTM - MAC has returned after a year of stopping treatment. I lost so much weight and felt awful. I managed to work full time as a teacher for 8 months out of my 14 month treatment. I was determined to finish my treatment I am usually a very determined person. This time I am not so sure. I do not feel as ill as I did when diagnosed with MAC first time round. Has anyone decided not to have treatment. As you say everyone is different but I felt awful everyday when on the big 3. I know a lot more now and have done a lot of research. It took me about 8 months to feel anyway normal again. I have underlying bronchiectasis. I cough a lot most days and have had a few flare ups. I was given amoxocillin but was violently ill - I was always able to tolerate these before when I had a chest infection years ago. Would love to hear how other people have managed.
Replies to "Interesting that you say you would not go on the big 3 for a second time...."
Yes I guess age has something to do with it. I’m 67 and I want quality of life. I don’t want to live feeling sick, sitting on a toilet seat lol feeling nauseous and facing the tablets/capsules at 6am in the morning. To top it off no good health care, feeling that you are just a number, which you are haha and that they don’t really care about your side effects because they are too busy or for whatever reason don’t get back to you for 18 days and a dozen phone calls to get a response. Do, you end up with permanent problems. Boy! That feels great, I got it all out. I’ll take one good year doing what I like than meds for the rest of my life, well toxic meds. They are probably giving us other long term effects, I find it hard to believe some have been in these for 5?yearsbor done it 3 times for 18 months without it having effects on the bodies organs. Plus I can’t take the tiredness I feel on them. So once for me if it comes back, what happens will happen, I just hope these meds haven’t stirred the bacteria to come back with a vengeance. Sorry, just my feelings about this.
Although I know some taking these everyday and have no side effects whatsoever. I could not do these everyday, no way.
I wish you the best with your treatment.
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I must have been born under a lucky star. Like you, the antibiotics made me feel awful, and actually were stopped before I was negative due to the side effects. But I kept up rigorous airway clearance with 7% saline after stopping, and my lungs actually continued to clear the infection.
Under my pulmonologist, I have gradually been able to "dial back" my airway clearance to once a day, use my asthma meds religiously, and only use 7% saline plus nebs during exacerbations.
Did you maintain your airway clearance routine after stopping the meds?