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MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Replies to "My name is Christa, I have a child's glee about life, so I am a Unicorn...."
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.)
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)