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

Diagnosed yesterday. I had a “poor pitiful me day” yesterday and now I’m ready to fight. What 5 meds are you on please? I have Multiple Sclerosis too and there is some concern about adding medications. Thank you!

Welcome to Mayo Connect. Yes, a MAC and/or Bronchiectasis diagnosis often leads to a "poor pitiful me day" - hardly anyone who doesn't have these conditions has ever even heard of them! And early reading sounds so dire...

Let me begin by saying - a "Big 3" or 5-medication regimen for MAC is not a given. Depending on the severity of your condition, and the presence of other medical conditions, more conservative treatments can be tried first.

For early reading to become familiar with your condition, I recommend:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria and
https://my.clevelandclinic.org/health/diseases/21144-bronchiectasis
And feel free to read posts from all of us on the discussion, and respond with any questions you might have.

Can you tell us a bit about what led to your diagnosis? What tests have been conducted so far?
Sue

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

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.

Thank you Thank you Thank you for simply telling me the differences in the names MAI versus MAC. This is such a wonderful explanation that I wish a doctor had told me. Just being able to know "why" is it so hard to find information about MAI now makes sense because you took the time to tell it to me. Thank you.

I had 2 bronchoscopies and on one of them they were able to obtain a Sarcoidosis sample. I have had 2 sputum tests done over the past 6 months and in the first set of 3, one of the samples grew MAI. On the most recent sputum test 2 of the 3 grew MAI. My new Columbia pulmonologist says she has "great faith" in Columbia's sample that says Sarcoidosis. I just met with her yesterday and she has now told me that I have both Sarcoidosis and MAI. I also have Multiple Sclerosis and she is sending me this week to Infectious Disease doctors to sort out what meds are going to be most suitable for my lung issues considering the meds I am currently on for MS. Thank you for your questions and concerns. I really appreciate your kindness. Warmly, Christy

My main concern is vision impairment from Ethambutol. I am already blind in one eye due to repercussions from Multiple Sclerosis. I already have enough issues due to MS itself but feel that blindness would be the absolute worst. I saw that Ethambutol was discontinued in the US at one point. Does anyone have any other viable meds that they are aware of that do not cause vision impairment? Thank you!!!!!!!!!!!!!!

MAC/MAI can be treated without Ethambutol in some cases. It is just that the 3-drug regimen seems to be the most effective, but there are options. I hope the ID doc can find the right combination for you.
Sue

I believe vision impairment from ethambutol is not very common. I've been on it for a couple weeks and I have not had any side effects from any of the medication. I'm only on zithromycin and the ethambutol right now but an inhaler is the next thing he's going to be adding. For some reason he is not having me take all three antibiotics, and I'm not really sure about that. He did tell me that it was mild right now, even though I have us 3.7 CM hole in my lung, or cavity. The last CT scan from a couple weeks ago showed that the walls had thinned out tremendously on the cavity, and most of the satellite nodules had disappeared, and that was before the antibiotics really would have had a chance to work so he said that was a good sign. I'm not sure if that's why I'm not on the full boat of antibiotics or not. But as long as things are getting better I'd rather stay on as little as possible. I wish you all the best though! But, I don't really think that going blind or having vision problems is what most people have, I think that's something that can happen sure with almost any medication their side effects. Good luck with everything!