New Diagnosis of MAC/MAI & I'm scared

Exercise does help me to feel better, but I get out of breath a lot. Not on any meds, just vitamins and bone broth. Looking for another doctor and hoping I get a good one. So far all they do is CT scans every 6 months and blood work. I just keep working and moving every day. Does anyone question the intercellulare part of the disease? My bones hurt more and digestive system gets bad at times. I believe that other cells in body are being attached. So tired most days. So appreciate everyone's posts on here.

@cindyrue, Hi Cindy. I don't have any personal experience with mai that has disseminated to other parts of the body. I don't think it is very common, but I know it does happen sometimes. Definitely stay on top of that. Discuss this with your doctor. Exercise is one of the best things we can do for ourselves. I go to a cardio class twice a week for 70 mins each. I have to take a Inogen Personal Oxygen Concentrator with me as my oxygen plummets to the low 80's when I exercise. I find that I still have to rest out for a few mins about three times during that 70 minutes. I feel so much better for going though. I also walk 30 mins twice a day. Will you please keep me posted on what your dr says? Are you on the Big 3 antibiotics? If so, could they be making your bones and stomach hurt?

@ann0616

Hi Ann
I just saw your post and it is only one of two that mention
Ground glass nodules . I just had a Ct and they found
6 mm ground glass nodule and bronchiectasis. They recommend waiting a year to see if Ground glass nodule
Grows . Do you know anything obout GGNs. Just got over a bad case of walking pneumonia .
Thank you for Amy info

@cindyrue
Hi there, like you I keep pushing myself to work, work out, and I am not being treated with The Big 3 right now. YES I agree at times my other body systems are being attacked, especially GI tract, though the research says the disease only spreads outside the lungs in those with immunodeficiency (HIV). Just got another sputum sample back with more fungus, so my ID doctor just ordered another sinus & chest CT scan in hopes of determining if it is just a colonizer, or if it is causing disease. Just had both scans in January, I will glow in the dark before long, LOL! Prayers for all.

@lindaphilly Hi Linda
My doctor also wants to watch and wait on my ground glass nodules and bronchiectasis. They did not seem concerned at all about the nodules. They told me that it could be from having pneumonia and whooping cough in the past. I had a horrible case of pneumonia two years ago. I was in the hospital for a week. I’m sorry that I can’t tell you any more about GGN. Let me know what you find out.

Thank you Ann. I am going to see a pulmonary doctor
End of April. I will let you know what I find .
I didn't like what I read about the GGN. I know most pulmonary nodules are benign . But from what I read
GGN could be an indication of early stage of adenocarcinona if the GGN grows .

Yes, that is absolutely correct. I speak from experience with that. And that is why if you have nodules 5cm and larger your doctor might suggest having them biopsied especially if there is a pattern of lung cancer and MAC in the family.

@ann0616 Sound like what happened to me. Big pneumonia out of the blue. Hospital then discovered MAC. Watched with CT for about 2.5 years and there was slight worsening over time until finally I was put on the Big 3. I am finishing Month 15. The past 3 months have been a bit harder to take. I have a CT next month and it will be decided if I can come off them.

@lindaphilly etc....there are guidelines etc for nodules and follow up....google “ Fleischner Guidelines” tdrell