(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!
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 ..
– 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.
@conniewright …thanks for positive feedback on Dr Mitchell. The video is a few years old…so he has done even more of the surgeries since this was made. I have heard him 3 times at annual NTM workshop at NJH in Denver and continue to be impressed with him…as well as all of the NTM care team there. Just back from annual visit to NJH …each time my admiration for the place grows. Tdrell
I was living with a parrot for 13 years and when my immune system went down, i got this disease. The dr. told my husband to get that bird out of our home and bring hazmat in. He said no human should bring a bird into their home. I am finding that being around sick people is not good for me. When i get a cold, it turns into much more and i get so sick. Because i dont look sick, people do not take me seriously. I am fighting upper respiratory infection now and it is awful. I am so tired and weak. We have to eat things that help our immune system.
Hi dear! I have a bird for the pass years! He’s a Conure and he’s wonderful. Now after I read your post I’m concerned about my heath. I would break my daughter s heart if I have to give him up. Thank for the information.
@ @cindyrue, What are some of the food you eat to help your immune system. Reason I ask, my wife is immune system is suppressed, tired and weak all the time.
That was one of the first things I was asked at diagnosis. Have you been around birds? Apparently, MAC is associated environmentally with birds. I had a homing pigeon as a child, and my aunt, who I spent many summers with in New York State, had two really cool parakeets. Something to think about I guess.
..Your posts are interesting. I have never heard of a connection of MAC with birds.??? Wondering if other folks on this site have heard that from any Doctors at Mayo Clinic or NJH? Also wanted to mention to Cindyrue that my Dr at Mayo told me that I should have on hand a script and 3 refills for a good antibiotic (other than the ones used in the treatment of the big 3) for any flares. I too have a somewhat weakened immune system so when I get sick it often goes into pneumonia or bronchitis. He did not want me to waste the time going to a Dr…but to start an antibiotic immediately so that it didn't get bad. This also makes me feel mentally so much more secure.
@cindyrue MAC (I think) Has latin word for birds in it Mycobacterial AVIUM intracellulare. I was asked about being around birds also grandparents had chickens. So maybe that was source. I got double pneumonia when 5 so bronchiectasis probably set in and maybe the chickens contributed. Could have been so many thngs.
There are some serious diseases carried by birds Histoplasmosis is one.
Another Bird Fanciers Lung BFL.
I stay clear of birds but I do like to watch them at my bird feeder outside my window though.
Here is a list I found online:
Cryptococcosis (Cryptococcus neoformans) …
Histoplasmosis (Histoplasma capsulatum) …
Mycobacterium avium complex (MAC, Avian Tuberculosis) …
Parrot Fever (Psittacosis; Chlamydiophila psittaci)
So it looks as if MAC Avian TB is Also carried from birds.
I have had this for four years, now coughing up blood? Is this common in alpha one and mai cases?
@cindyrue, @alleycatkate, our family had a parakeet for 11 years as I was growing up. I have Avium and abscessus in lungs, abscessus & MRSA in sinuses. Just got over a round of HIB in lungs. 10 days of DS Cifruoxime antibiotic seemed to help; time will tell.
I Was told MAC Avium had nothing to do with birds. I also had bad pneumonia bouts every 10 years of life, now 57, finally diagnosed 3 years ago. Was an athlete and coach. Never smoked. Always just fought through sickness, as trained, until 3 pneumonia bouts in 2015 and eventual diagnosis. Overused antibiotics to “keep going”.
Now my “ training” is having the discipline each day, with God’s help, to do my 2 hours daily airway clearance!