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(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!
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Hi Lynn, I have not been diagnosed as of yet but this sounds like me and I may even be worse off. Prednisone calms me for a few weeks but then it comes back just as bad and I have great difficulty breathing. A single sputum test did show Mycobacteria. Soon I will have a scope in my lungs to determine 100%. I will remind myself of what you are doing to help yourself ,, thank you.
It can be tough to get diagnosed and take time. A bronchoscope was able to give clarity for me. I pray it does the same for you.
Thanks Lynn , much appreciated.
This seems to be typical. Unless you are already diagnosed with bronchiectasis, MAC is not something the docs think of until everything else fails. My own diagnosis took over 2 years of repeated illness and coughing with numerous rounds of prednisone and antibiotics. Then 2 months to control pseudomonas and 18 months of MAC antibiotics. And 4 different docs plus some ER visits.
You might like to contact your docs and ask about a nebulizer with saline and airway clearance to help move everything out of your lungs while awaiting final diagnosis.
Sue
Thanks Sue, I feel better knowing there are people like you on here to provide guidance ! I hope to beat this with all of support and knowledge provided ! Thanks again 🙂
Hi Jennifer, I just found this great article on MAC and reducing exposure. It sites some of the things you talk about. I found this very eye opening. https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR
Take care and good luck. Carolyn
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1 Reaction@bluesplashgirl That is a great and sobering article as it definitely reminds me that similar to Covid 19, those of us with MAC can’t let our guard down for a minute. Thank you. @irene5
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1 ReactionThank you, Carolyn. I had lost my link for this article, which had=s been posted here before. I have added it to my bookmarks, so now I can easily refer people to it. It is concise, but contains references to the scientific studies in case people want more details.
Sue
Thanks so much
Thanks so much I’m going to check it out