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

@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

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

@pfists ….I did not think in general transmission occurs for NTM infections directly between animals/birds and humans....as with M A C....but rather the droppings fall into soil and are aerosolized.. tdrell

I think you are correct!

Here is a link from the CDC
(Center of disease control) on diseases carried by birds and safety measures you can take if you have a bird.

I'm not certain on if MAC can come from birds
However the word avium means bird.
(Mycobacteria avium complex)
Would be good to know if it does or not.
https://www.cdc.gov/healthypets/pets/birds.html
Shari

@tdrell

Tdrell
Here is from the CDC

complex (MAC, Avian Tuberculosis)
MAC is a bacterial disease spread to people from birds and other animals through the environment. Affected birds can become depressed, thin, and weak, and might have diarrhea. Birds carrying this disease shed large amounts of the bacteria into the environment.

Experts believe that people get MAC through exposure to the bacteria in the environment, though it is not clear exactly how the bacteria are transmitted. This disease primarily affects people with a weak immune system. Affected people might lose weight, have abdominal pain or diarrhea, and be anemic or feel tired.

So I'm not sure....it does say they arn't sure how it's transmitted.
I do think the main source is water but may want to take precautions around birds.
Shari

@rlrobi2 I also coughed up blood before my initial diagnosis of bronchiectasis and MAC. There was a LOT of blood and it continued to come out throughout the night in the ER. But it did stop the next morning when I was released. I don't have alpha one (don't know what that is) but did have MAC/MAI. From what I have read about this type if infection, some people never cough up blood and some do. My pulmonologist confirms my findings. The amount of blood can vary from person to person. After the first incident over 4 years ago, it happened for the second time shortly after but there was only a trace of blood in the mucus that I spit out. Since then, no blood at all. There is no need to panic. It is the result of the infection in your lungs. Like @unicorn said, you only need to do something if there is large quantity. But if you are concerned, I would suggest make an appointment and get more information and assurance from your doctor.

Good to know. Thanks so much!

Hi Phyllistamara! I have been on these drugs for over 4 months now - started on October 1, 2018. I have had to play around with the times of day that I take them. For me, it works if I take them right before bedtime. I sometimes wake in the night with cramping; but sometimes do not. I think that mostly has to do with what I ate during the day - green salads, fried foods, and dairy products tend to upset my stomach more than others (which is sad because I love green salads!). I try to eat more carbs than I did before - which helps settle my stomach. And drink lots and lots of water.
I also go to the eye doctor and have my eyes checked every 3 months while on the big 3.
So far so good!