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I was recently diagnosed with MAC as well. It's a very scary time! My doctor started me off on the azithromycin first for 5 days, then to the Ethambutol, and will be prescribing an inhaler with some medication. I'm not sure why he only prescribed me two antibiotics and not three, although there's going to be an inhaler. I guess every doctor does things different; I see a really great doctor with infectious diseases. I believe that is what most people see who have this. My main advice I can give you is to take all your meds at the same time and eat with it!!!!! Whichever is your biggest meal of the day, if it's breakfast lunch dinner. This medication is well tolerated when you eat with it. I noticed that with the azithromycin I would feel a bit nauseous not eating. I am a 52-year-old female, and I have not had any problems in the medications so far. I've been on them for about 2 weeks. I haven't gotten sick, tired, etc. As a matter of fact I had a CT scan about 5 weeks ago and I have a pretty large cavity in my upper right lobe, it was 3.2 CM at that time and I had a bunch of nodules all over the right side of my lawn. They were going to do a CT guide at lung biopsy last week but when I went to have it done they did another CT scan and everything was clearing and that wall of the cavity had been out so much they canceled the biopsy. So I guess that was all really great signs, but my doctor said that it couldn't be from the antibiotics because it was just too soon for them to really make a difference so my body must have tried to start healing things. Anyway I really wish you luck! There's a lot of people on here that are really helpful and know a lot about this stuff. ♥️
Replies to "I was recently diagnosed with MAC as well. It's a very scary time! My doctor started..."
When I was taking the Big 3 together with or after a meal, I had terrible diarrhea, so bad I would not want to experience it ever again tbh. It felt like everything I ate left my body right away and in a very aggressive manner and no nutrients were absorbed. A month into this and I felt drained and dehydrated. So for me, the best way is to take the Big 3 separately, one in the morning, one mid-day, and one in the evening. My diarrhea has gotten very mild compared to what it used to be and I feel so much better rn. I have been taking the Big 3 for almost 5 months now.
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Wow! that's very interesting. I have a pulmonologist who discovered the Primary Immunodeficiency AND the MAC. I've been to so many doctors, and the nurse practitioner at my pulmonologist's office is who figured everything out! As a nurse, I'm really proud of her! I'm starting Immunoglobulin G monthly infusions Wednesday. My Infectious disease doctor wants me to have a few infusions in me before starting my MAC treatment. Side effects from both the infusions and the MAC treatments have sure been on my mind. Learning from others has been a huge help, especially what they're experiencing and how they deal with it. I sure do appreciate your response and your advice. God bless you.