(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Perhaps I'm an outlier, but I'm guessing not...my MAC moves around, heals in one area, then moves to another, which my Pulmo who specializes in NTM's determined to be not needing treatment...in essence I'm idling in neutral. I believe amount and type of treatment must be on a case-by-case basis as all folks are different, with varying systems and responses. Given that I also have RA which comes with a compromised immune system, I feel fortunate to have found a doc who really knows his stuff!
Hi @boomerexpert I have heard of that before, so wierd that they move around! Have you had negitive sputums for MAC?
Maybe they are like hermit crabs - always moving into a new and bigger house as they grow!!
@boomerexpert Are you sure it is the same MAC infection that is moving around and not re-infections that occur in different spots at different times?
Hello Gina. Have you tested since Dec 2016? If not, you may want to think about it. It is a good idea to stay on top of that; just to be sure it is not colonizing.
Hi Jan. Remember, there are no foolish questions here. - Terri M.
Hi Linda. Question: do the hard copies of your lab work show colony size, and specie?
Hello, I have a question; when the MAC moves around in your lungs, is it leaving damaging scar tissue where it was last?
Jan, you mentioned that a "minute" bit of MAC showed up in your lungs. From my understanding, every person has a very small amount in their lungs, they just have have a properly working immune system that keeps it in check. I am curious,; how did Rochester pick up on MAC right away?
Jan, my Mayo clinic does not get MAC test results back quickly. It takes about six weeks, because the culture needs that time to grow.