Who all has MAC and Alpha-1 Antitrypsin Deficiency?

I have MAC and Alpha 1.

Thank you for replying. I was expecting a lot of people who has had MAC to also have Alpha 1. It could be that a lot of MAC patients have never been tested for Alpha 1. I have had two lung doctors, and the Alpha- 1 test is the first thing that they both did on me. According to my lung doctor, the lungs or airways of people with normal genes are protected from bacteria that causes MAC disease. May I ask you if you have every had a fever with the MAC condition?

@hammerheadham and @miloandlisa, I believe @jeannie55 and @discerning1 fall into this category of having both MAC and Alpha 1, too.

There are a few alpha-1 antitrypsin deficiency and lung conditions in the Lung Health and COPD support groups too:
– Alpha-1 Antitrypsin Deficiency – just been diagnosed https://connect.mayoclinic.org/discussion/alpha-1-antitrypsin-deficiency-just-been-diagnosed/
- COPD: Is it genetic? alpha-1 antitrypsin deficiency https://connect.mayoclinic.org/discussion/copd-is-it-genetic/

How does your management of MAC change knowing that you have alpha-1 antitrypsin deficiency?

From what I learned via genetic testing at NJH in 2010, I have an Alpha-1 deficiency (along with NTM) but it isn't low enough to need infusions. I don't think of it often because it's just part of my genetic make-up. Without infusions, it can't be changed (at least that's my understanding.)

Hi busybeans. I do not know much about the infusions but I don't think you can change your genes. The infusions are probably to improve your ammune system against lung and liver problems. When you think about the mycobacteria that causes MAC, it is in the air and the soil. You would think that anyone that breathes would get MAC. But instead if you do not have alpha-1, but normal genes , you would never know the bacteria had ever been in your lungs because our ammune system was designed by our creator to protect our lungs, therefore it would not become a problem. Anyone with any type of problems with their lungs or liver should be tested for alpha-1 deficiency. Even if anyone who does not have lung or liver problems should be tested as well, even your children. I am not trying to tell anyone how to manage MAC, but for me the Big 3 has not been a good option. I load up on vitamins and mineral supplements, I am trying to not eat foods that causes inflammation and work at keeping my excess mucus clear. My lung doctor is going to run a test on my immune system to see how it can be improved. Do things to reduce stress in your life, stress is never good.

Oh I agree...there is no changing one's genes. The person I know who has infusions does so to prevent/protect her lungs from further damage. Like you, the Big 3 were not an option for me. I exercise, try to eat well, and supplement with vitamins and minerals - all the while doing my airway clearance daily. And stress...like everyone else, I do the best I can with it.

I have an intermittent fever. It is weird how it comes and goes.

Is your alpha-1 by any chance MS? I have the MS even though it may not be highly deficient, you can still get sick. I asked about the fever because that is a sign that your immune system trying to fight it. I have not ran a fever or had chills. Now the excess sputum and inflammation may be all my immune system is doing. You should not try to suppress that fever unless it gets too high. The clevelandclinc website has good educational info: this site will not let me post it since I am new. You may google /health/diseases/21175-alpha-1-antitrypsin deficiency. Check the clevelandclinc site.

The infusion, Augmentation therapy, may end up being an option for me. I will bring that up to my lung doctor if need be.

Thanks for info.

I was told I have the alpha 1 gene but my antitrypsin levels are sufficient. From my readings it seems that makes me a carrier, so I am passing along the info to my daughters, especially the one who has from childhood, held onto coughs after every cold, as I always did.
Anna