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@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

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Replies to "My name is Christa, I have a child's glee about life, so I am a Unicorn...."

I think the word "susceptible" is the most accurate term for most of us. Immunosuppressed applies to other conditions where people get MAC. (e. g. Aids)

This is a great place to reiterate facts I've provided before on the issue of immuno-compromised vs. non in the contraction of NTM's - although it was most prevalent in HIV/AIDS patients with compromised immune systems, NTM's are now found in persons with healthy immune systems. This means that it has grown stronger over the years, and no longer needs a downed immune system to gain a foothold. For me, this is why we need a registry, just as the one currently in effect for NTM's cousin TB; docs & researchers must get a more accurate handle on how quickly this is spreading, and more of the general population.

@boomerexpert You are right. When I was first diagnosed with MAC, I did a lot of google search to find out about it. Most of the search results pointed to HIV/AID patients as the victims of MAC. So obviously the medical community is probably still holding that belief and consider people like us, who do not have AIDS or are not HIV positive but have MAC as some kind of exception..

@ling123 - there's a bit more to it. It was found in HIV/AIDS patients first in the 90's - then it was found in others with compromised immune systems like those with RA/Lupus/Crohns or who have been on immunosuppressing chemo treatments - now it's infecting people with no history of being immunocompromised. It's spread and voracity are growing, with no concomitant surge in research.

@3ling12 You
are right Ling. Dr. said that I am not immunosuppressed. Crappy lungs (i.e.
bronchiecstsis makes for great opportunity for MAC infections, etc.)