About

Member has chosen to not make this information public.

Posts (21)

2 days ago · Big 3 and weight loss in MAC & Bronchiectasis

Thx so much for listening and helping me sort all this out. I know my scheduled next time to see my doctor, but he really didn’t explain under what circumstances may require an earlier appointment. That might be a good question to send to his office, although as long as I don’t get any infections, my guess is we will stay the course……battling fatigue seems to be a norm and my weight is holding steady.

4 days ago · Big 3 and weight loss in MAC & Bronchiectasis

I see a pulmonologist at Mayo in Rochester, MN. I had a CT scan prior to the sputum test and that’s why he ordered the tests. I do cough up sputum (it is usually clear, murky, or slightly blood stroked, but not yellow or green) after respiratory therapy. Information is limited on the internet but here’s what my doctor told me: 2 of the 3 cultures showed mycobacterial current-gordornia polyisoprenivorans, which he called and does not cause disease unless there is an immunodeficiency (which I do not have)……..I am stable as far as no illness is concerned and I am due to see him again in 6 months. I do experience ongoing fatigue and some chest pain (this is minimal). What do you think?

5 days ago · Big 3 and weight loss in MAC & Bronchiectasis

I have a question that perhaps you can help me with. I had a sputum test last fall and two of the three tests came back with positive results and my doctor (whom I like and respect a good deal) described the cultures as some kind of bacteria that acts as a colonizer and is not a mycobacterium that requires antibiotics. He asked me to return to twice daily respiratory therapy (which I’m doing) but I don’t really understand the difference between all the terms that get discussed on this forum. I guess what I’m asking do you think a wait and see approach with what I’m doing is best or do you think I should pursue further? Although I wouldn’t really know what to pursue. I am not actively sick -I’m working- but have a good deal of fatigue. Thx for listening to this ramble😜

Mon, Jan 7 9:06pm · Big 3 and weight loss in MAC & Bronchiectasis

I have been doing respiratory therapy for a little over a year now but have not had to deal with many illnesses, but my appetite is very variable and I have trouble holding onto my weight also. I do some of the same things you do to help, but it is challenging. Thanks for posting this as it helps me to understand this illness better.

Fri, Jan 4 9:38pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Although it took a long time to read, it was very interesting! Thanks for posting!

Dec 16, 2018 · Extreme fatigue in MAC & Bronchiectasis

I feel the same way most all of the time, although I rarely eat food that is processed. I try to fight through it, but it feels overwhelming sometimes.

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

I question the same types of things as you do as the fatigue increases during my work week to the point of exhaustion on the weekends. It’s really hard to do any exercise at all when working but do try to push myself a little. It’s nice to hear others’ experiences as my pulmonologist doesn’t say much about my fatigue except to do the respiratory program twice a day instead of once a day.

Dec 8, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

I am so sorry to hear how widespread the infection is and how much you have to cope with. My thoughts are with you💕