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Wed, Feb 6 12:20pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@cindyrue Just looked up AVIUM and it is BIRDS in latin, so someone is giving confliction info.

Wed, Feb 6 12:18pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@rirobi2 I cough up blood now and then, the first time lots came out and I ran to emergency. They really cant do anything unless it wont stop, then they will do intervention therapy to cauterize the broken vein in lung with a lazer. I have bled 4 or 5 times, but dont go to hospital, it always stops. I stand over the sink and get it out. However one has to keep clearing the airways before the blood clots, that is the danger. So learn to hawk up and spit really well. I had 2 teenage boys so learned from the best.!! I know it is terrifying but mine has always stopped, I guess I am used to it? I guess we can adjust to anything. The docs want to know if it is half a cup or so, in case need transfusion, xo

Wed, Feb 6 9:49am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@cindyrue MAC (I think) Has latin word for birds in it Mycobacterial AVIUM intracellulare. I was asked about being around birds also grandparents had chickens. So maybe that was source. I got double pneumonia when 5 so bronchiectasis probably set in and maybe the chickens contributed. Could have been so many thngs.

AVIA

Sun, Feb 3 3:47pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

THIS IS TO everyone. My son having baby soon, I will be around a lot, What cautions if any should i take, Mask all the time? I can get fancy one and be a super hero…….

Sat, Feb 2 6:24pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Connie, I hate getting old also! I was so cute, was was. Well at least I'm thin and look great in jeans, thanks to the MAC. I'd like 10 years also. That's what I figure I have left, 10 good years. Maybe good. Yes research is pitiful, but there is some hope from AIT Pharmaceuticals. They are developing inhalants with the Israelis. They are for cystic fibrosis and COPD but they mention mycobacterials also. Just hang in there an watch great stuff on netflix, Oh, and Winter is Coming!!! xo

Sat, Feb 2 10:35am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Connie, I am curious, how old are you? I took the pills at 67-8 and they killed me. At first no side affects(one year) but then they all started piling on. I eat organic, work out, am fit but the azithromyacin wiped out bowels,(severe cramping, many bathroom trips, weakness) hearing, (tinnitus) eyesight, (glaucoma) etc. Now I am dealing with the fallout. The mac does get a little worse each year and little harder to breathe, and yes, fatigue, but still moving along, cruises, family gatherings, exercise. My main thing of course is not to get sick…Anyway, I regret taking the pills and am hoping something else comes down the pipe, an inhalant, etc. This is a brutal pill regime. I think you can do it if you are younger. Thanks xo hope to all of us!