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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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They say that is what I have now after I have had MAC, taken the "Big 3", had Lung Abscess in hospital for 20 days of multiple ivs.
now they way I have Mycobacteium Gordonae and pseudomonas aeruginosa infection again. They have me on Levequin again. Which is so painful to my joints.
@donut I’m so sorry for all the pain and fear you have endured in this journey. I understand too well where you are. I really had trouble with Levaquin, too. Maybe you could let your doctor know it is bothering your joints? Prayers
I just found out I have Mycobacteium Gordonae and just starting my journey. Sorry to hear that yours has come back. I was wondering if this ever went away and I guess it does. Did they ever tell you where this comes from? Good luck and God bless.
Water is what I was told. I'm sorry I'm at work. Just can type a quick message. I pray the Lord Blesses you They say they do not need to give me anything for the gordonae. What exactly have they told you? I message you later.
I did and the ER doctor told me to take ibuprofen..which the internet says will react. So, he called my infectious disease doctor who sent me to the ER for IVs and they the ER doctor comes back mad and says this is your choice or set an appointment up with your infectious disease doctor rudely. My husband said she is just scared. He was in such a hurry...we drove over an hour to get there doing what the dr that knows my body told me to do. I am in a hurry sorry. wanted to quickly respond. So frustrating...
@jammer for what reason do you not want to go to Shands?
@sounder27 yep...it's a constant balancing act for all of us with multiple conditions...Once you get yours figured out you'll be good to go!
That’s just it. I haven’t gotten anywhere near to figuring this out. I am beginning to get discouraged. There do not seem to be any pulmonary doctors in the Rhode Island area that have any solutions to offer for addressing the whole body. I went into hospital to have an ablation for the afib and the anesthesiologist would not proceed because of the mucous buildup from the Mac/bronchiectas and the length of time for intubation. I need to get rid of the mucous. Will the clear lung do that?
I just got back my test to let me know what I have and it is the Gordonae. My doctor does not know what to do he is sending me to Shands in Gainesville, FL as soon as he gets my CT back maybe next week. Why no treatment for the gordonae?? Coming from water, drinking water?
My doctor says they are good and is closer to my home, why?