← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Discussion
Comment receiving replies
@windwalker

Replies to "Thank you @pattriciaann!"

Well, I've been gone for a few weeks with family & house guests, but I wanted to report that last Tuesday my husband finally got the diagnosis for his 6-month-old worsening cough from our pulmonologist - he ALSO has bronchiectasis (just a little at this point, and no scarring or white pockets indicating a long-term infection with MAC), and something else the doc calls "shadowing" in the lower lobes of both lungs. This comes just 3 months after my diagnosis. Doc is pretty sure both are the result of the rheumatoid arthritis he has had for over 30 years. Based on preliminary results on his sputum cultures, it also appears he has MAC but not pseudomonas. Doc is waiting for second result as confirmation before beginning treatment. So, this guy has been in practice for 27 years and says this is only the second time he has had both spouses with the same diagnosis!
On a happier note, I have been taking the "big 3" for over a month now, and am doing Okay as long as I use a daily probiotic, eat a light, somewhat bland and starchy meal before taking my meds, take each tablet with a bite of yogurt, and follow with a ginger ale cocktail (real ginger ale/beer with the chunks of ginger in it.) Skip any one of these, and I'm up sick in the night and feel awful the next day! By forcing myself to eat (have no appetite) I have managed to stabilize my weight after initially losing several pounds the first week. I use my Acapella every day, and my husband has started as well, but I'm going to ask the doc about saline nebs for us.
We use a Pari Vios neb, and it takes 12-14 min for 4ml session.