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

Be safe @windwalker !

@tdrell Still have the cold, darn it. I think the hurricane is going to bypass us. They lifted the mandatory evacuation. I am still headed to Florida on Thurs to see the pre-screening of the PBS Mayo movie.

@526laura Hi Laura. If you click on your picture or name, it should take you to your account. There, you should see a list of options. Click on the 'notifications' option and that will bring up the list of posts. Another way is to tap on 'view and respond' button, then scroll to the top of the page nd you will see numbered blocks with the last one saying 'last'. Click on that one and it will show the last thread. Then click on the numbered ones as you want to go back in that order.

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

Thank you @pattriciaann!

Looking for a nebulizer recommendation. My husband & I both use it.
We currently have a Pari Vios neb at home, and a Devilbiss Traveler battery-operated neb for travel. Both require separate tubing, mouthpieces, etc and are really not very handy. I was wondering what experience anyone has with the ultrasonic type. Ours deliver a 3-4ml dose in 12-14 min for the tabletop model and about 20 min for the battery unit, and I'm not really interested in anything slower. Is there somewhere I can go to find reliable reviews of nebulizers?

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.

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?