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

His correct spelling of his name is: Faulkinham...Sorry

Here it is, January 2023 and I’m still in semi- isolation. Aaaaarrrgh! During Christmas, daughter who lives near me tested positive for Covid. Yesterday son, who lives in Chicago, positive. Here, a big meeting cancelled, speaker has Covid. Traveling Broadway show cancelled. Cast has Covid.
Gaaaaaaaahhhh!

I feel your frustration! We were beginning to relax a bit, u til in the past week 8 friends and neighbors, mostly asymptomatic except for a "scratchy throat" tested positive for Covid. All those fully vaccinated and taking Paxlovid have recovered fully within 5 days. Others, not so lucky, including one in hospital. And then there is the gastric flu... We have returned to only outdoor socializing and very limited sharing of food and space. And masks when out in public. Too many here believe we can go back to "normal" - I wonder when that might happen?
Sue

I take 1 probiotic (Prevagen) that you can get at the pharmacy with no prescription. The pharmacist said he takes one everyday. I also try and eat yogurt at least 4 hours after antibiotics and it seems to be keeping my gut healthy.

And also bear in mind that all statistics are past, the statistics for the future will have better outcomes as new drugs are bring trialled and new research undertaken.

Open to all and any improved drugs or ideas to help fight this nasty disease. No fun over here!

Big Hugs to all of us who are still isolated - and frankly, see no end in sight. I was sure after the first round of vaccines and the booster that life would resume as normal. Then came the bivalent and I thought, aha! here's the end of this. But three years later, I remain in isolation 90% of the time - no lunches (even outdoors) with friends, no movies, no church, and no family gatherings (they're anti-vaxxers). Thank goodness for a wonderful husband and my constant canine companion. Surprisingly though, my days are very busy. I work some (can't go into the office), do chores, do some writing, play with the dog, take long, long walks, and try to remind myself that "this too shall pass." Just sharing here makes me feel a little less alone. Believe me, I'm no Susie Sunshine...maybe I'm just having a better day than usual. In any case, thanks for sharing Woot.

Thanks for this uplift.!!

My name is Jane I am new to the site and was diagnosed with mac in 2/22. I have been on the 3 antibiotic 3 day a week regiment since 8/22. Is anyone using a nebulizer and fluttered and if so does it work for them. I have used it twice a day since last August with no results. I can't bring up sputim for testing to the point where they did a broncoscopy one time to get a good sample. I feel like it is there, but can't bring it up.

Dear Jane, I was like you unable to cough up phlegm. Bronchoscopy was necessary to diagnose the infection. I progressed from
1. Accapella alone to
2. Aerobia with nebulized saline to
3. The Vest with nebulized saline.
Accapella did not cut it for me and could not withstand heat sterilization, so I stopped it. The respiratory therapist at NJH taught me to use Aerobica along with nebulized saline. During the first three days of my stay at NJH, I had to repeat airway clearance with 7% and 10% saline to loosen up thick mucous in the lungs. After that, only 7% was prescribed for home use. Later, I found The Vest to be the best device. Initially, the Vest was set on one fixed frequency. But, after learning about the Minnesota Protocol that changes frequencies during a session, I become more productive. What works for me now is 20 minutes on The Vest with simultaneous nebulization of 7% saline, followed by autogenic drainage. Others do it differently because their needs are different.

If you are interested in having a guided autogenic drainage, go to the App Store, download Autogenic Drainage and just follow the directions in the Application. It takes 4-5 minutes/session.

From experience, I really recommend having NTM respiratory therapist to help you decide what the best course of airway clearance is best for you. You may have to make several adjustments like I did. It took me over 2 years to get to this point. The therapist is another yet NTM specialist you need to have in your life. The RT will also teach you how to clean and sterilize all the tools you use for airway clearance which is very important to prevent reinfecting your lungs.
Best of luck.