Connect
← Return to New Diagnosis of MAC/MAI & I'm scared
Discussion
New Diagnosis of MAC/MAI & I'm scared
MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)Comment receiving replies
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.
Replies to "Exercise does help me to feel better, but I get out of breath a lot. Not..."
@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.
Connect
@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?