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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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Wonderful! I am so happy for you. What exactly did you do, Did you take one pill for a month, then another for a month, like that? I told my infectious disease doc about it and she didn't like it. She called it progressive somethinng. As far as the nitric oxide stuff, I don't really know much about it other than it is going to be used for cystic fibrosis and copd. Working on patents. (these are canadians) know they are working on a better and faster delivery system. Not sure if safe for NTM yet, but at least there is research! I am still not taking anything, just doing exercise and saline inhalant. Seems to be holding steady. xo
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1 Reaction@pfists Hi Shari. Yes, I have to remain on antibiotics for life. My dr explained that he is treating the bronchiectasis, not the mac. Because of bronchiectasis, the invite for mac and pseudo will always be there. I have more going on with my lungs than most of you, so I am extra suseptable to catching mac. I have to say; that I think anyone with bronchiectasis must realize that possibility.
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2 Reactions@heathert, Hi Heather. I think that my doctor at Mayo putting me on single rotating antibiotics is the key to staving off mac and pseudo. Plus, I do the saline treatments, whole foods diet, exercise, and most important had a change in mindset. I just decided I was not going to be sick any longer. Aside from taking my meds regularly, I don't really think about mac. When I post on this site, it is as someone who has been there, done that. I am not fooling myself. I know things can change, but for now, I am enjoying breathing!
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6 Reactions@unicorn Will you please call your doctor and ask why she doesn't like how my dr treated me, and get that term she used with 'progressive'....? I would like to investigate it further. Thank you. I am glad you are holding steady. Are you doing a bit better than when we first 'met' on these pages?
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1 Reaction@jaejack Thank you!
@jaejack, I have been bug free since June 2016.
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1 Reaction@windwalker ...Wonderful news!! So very happy fore you
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1 ReactionGood for you! I did that 3 years ago. This disease will not define me!
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1 Reaction@windwalker ...Perfect mindset!! I've adopted the same....Not in MY body!! Working towards elimination and good riddance!! Happy Breathing to you.
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1 ReactionI agree with you, @windwalker Terri. Those of us with bronchiectasis are susceptible to catching MAC. Not everyone with bronchiectasis will be infected by MAC. But majority of the people diagnosed with MAC are also diagnosed with bronchiectasis. Knowing this fact is like being equipped with a weapon that helps us being more vigilant about the potential causes of MAC in order to protect ourselves.
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