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

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc...but I still continue to cough. Should note that pulmonary function tests are normal

Garry: You are right. It's more like a CT scan will show if the MAC is evolving, tree in bud, etc. but it will not diagnose MAC. In fact, when I first had a CT scan they diagnosed me with severe asthma, Luckily a savvy doc did a bronch, and sputum tests and I learned what I had but by then I was coughing up blood. 2 years of the big 3 drugs left me with tinnitus, glaucoma, really messed up bowels, stomach cramps, wierd skin rashes, heart palps, loooow blood pressure, and way under weight. Mom died at 94, dad died at 104, neither took any pills for anything!!!, the pills demolished me. Just had a CT scan yesterday so will see the progression after 2 years no drugs. i actually feel pretty good now, tired but I move well and enjoy life. Learn as MUCH as you can, you'll find you know more than some docs. Keep on top of new research. xo

I use to have my tub in the basement. I have heard that about hot tubs. Mine now is outside in the fresh air.I have also heard that the mac virus is every were in the soil etc. I do not use chlorine in my tub . I use copper I am always cold so I find that the steam room and ht warm me up. If I was sure this was causing my mac I would get rid of it. I got mac years ago before I had a ht.

@unicorn, Hi Christa. Did you get the results back yet on your latest ct scan?

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc...but I still continue to cough. Should note that pulmonary function tests are normal

@anniepie....good luck to you tomorrow with your testing...and let us know. So Sorry. Kate

Thanks Kate. Sorry no reply for a while, but t took a long time to work it all out with my meds and fix the neutropenia. The Big 3 can cause neutropenia -- especially Ethambutol -- but there are treatments to help.
In my case it turned out to be one of the blood pressure meds I am on and we've stopped that. So far, the neutropenia has gone.
(PS. As we get older more people develop reactions to drugs, even the ones they've been on for a while. I've also had to stop all Statins for cholesterol because I now get hypersensitivity vasculitis rash from them).

@anniepie ...So good that you got to the bottom of your neutropenia!! It is odd how all of a sudden something that is well tolerated, backfires! I had used the herb Turmeric for years with positive results on cholesterol levels and inflammation but then it resulted in hives!! Sometimes it is difficult to figure the culprit causing problems.....but glad you did and are doing better. Wishing you the best. Kate

@garry, I was in my outdoor hot tub nearly every night. I am fairly certain that I caught my mac from it. I say that because I read somewhere that one indication that it may be in there is that the ntm (mac) can cause a red itchy rash; which I did get. I also noticed that at one time our hot tub water had a 'pond' smell. I asked my hubby if he had been treating the water regularly; he said yes, but the water had not been changed in a long time. Long story short; I will not get into a hot tub, steam room, or indoor heated pool. Ever!

Hi
Terry , ct scan is done but I dont see doc for awhile, a month I think. xo