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@criggyf1

Thank you so very much for the kind reply. One problem is that I have MAI and not MAC. It is extremely hard to find information solely on MAI. To add to my "issues" I also currently have Sarcoidosis. Get that! Who knew you could have both? I am truly a "go getter" for sure...I met with a new Pulmonologist today at Columbia and now am officially beginning to feel more secure but am still scared out of my mind. I have Multiple Sclerosis "to boot" and doing research found that there is a strong link in developing MAI while on my current MS therapy (Tysabri; a monthly infusion that suppresses my immune system). Today was the first day that I found out that I have Sarcoidosis in conjunction with MAI. Have you ever heard of such a thing? Thank you kindly for reaching out to me. Extremely warmly, Christy Forrest

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Replies to "Thank you so very much for the kind reply. One problem is that I have MAI..."

MAI and MAC are the same - MAI is Mycobacterium Avium Intracellulare, one of the family that comprises MAC - Mycobacterium Avium Complex. Both are part of the family that may also be referred to as NTM or Nontubercular Mycobacteria. So, when you read MAC or NTM, just substitute "MAI."

Sarcoidosis and other inflammatory or autoimmune diseases often go hand-in-hand with MAC. According to my ID doc, it is often a matter of "which came first?" - I'm not sure of the answer.
Sue

Sorry to hear all that you are going through right now. It can definitely seem quite daunting, particularly when dealing with multiple diagnoses at once. I am glad that you are feeling more secure after meeting with the pulmonologist. The changing terminology for these infections and differences across doctors in the use of terms can add to the challenge of finding information about this condition. MAI (mycobacterium avium-intracellulare) is actually an older term for MAC (mycobacterium avium complex). They are both umbrella terms for a group of mycobacteria, of which mycobacterium avium and mycobacterum intracellulare are the species most frequently isolated in humans. It is my understanding that they were the first to be identified and difficult to differentiate, and thus the term MAI was born. With scientific advances, there are now several more species identified and grouped together, so they changed the name from MAI to MAC. There aren't a lot of studies that separate out the different species comprising MAI/MAC, although there are a few. I find that different doctors prefer one or the other term so both MAI and MAC are used across my medical records depending on the physician.