(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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.

@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Hi @marier welcome to our group, I hope someone on our group will be able to help you, I live in New Zealand so am unable to help, please dont hesitate to ask us anything you need to know, this is a wonderful group of caring people.

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@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Thank you, all! I am so much more knowledgeable after reading all these posts! I look forward to the support this group offers and hope that I can help someone else as we venture through this journey.

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@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Welcome Linda
I started meds for MAC in July and the support of this group helped me through the beginning. I was very nauseated at first but good now for the most part. For me worry was the worst part. That's much better thanks to the forum and just acceptance.

I just try to live healthy and then forget about the MAC as much as possible. I was depressed till I learned to let go. This group is positive.

Ask questions and keep letting us know how you are doing. Lots of folks have this crazy disease. It goes into a kind of remission, but we don't know if there might be people out there who are totally well after meds and don't bother being on this website. I know one personally who had MAC and her doc says she is fine now.

It's very different for everyone. Hope you do well with it.

Darling picture of you. Take care. Good 2017 with healing!
Kay S

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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Hello Marie, welcome I'm glad you found our forum. There is a Mayo Clinic in Jacksonville Fl. I don't know how far is it from where you live. Read the forum way back I think there is a good Dr. that knows more about MAC. We are all here for you. I will have you in my prayer. Cila

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I finially got a call from mission infectious disease in asheville nc today and i have an appointment this thrusday evening. I sure hope they treat me better with mai than asheville pulmonary did my wife , they act like its nothing to worry about .

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@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

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hi Marier, welcome to this site....you will find it very very helpful and supportive. Our Mentor Kate is traveling but will be back. In the meantime you will find it helpful to read over comments from the past.
there are links to helpful websites....also be sure to try to view Nationaljewish.org/videos
they have the videos from the all day workshop in 2015 and then add 2016 after "videos" to see this years.
world wide speakers....all experts in their fields....and in 45 minute segments.
NTMinfo.org also another invaluable site
happy new year coming up and welcome to the site
tdrell

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@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Hello Linda and welcome!

Boy, you certainly have a double whammy with having both Atypical Cystic Fibrosis and MAC! Your lungs will really be stressed. You have my heartfelt concern.

Your co-worker with these diseases is representative of many ... I've had NTM/MAC for 9-10 years and worked 60/hr weeks the entire time. I missed 3 days in 12 years due to illness. While NTM/MAC can be difficult to manage, it does help if one looks at it like diabetes or MS, in that you do need to 'manage' it. A good pulmonologist is key, but so is taking your meds (if meds have been prescribed), getting plenty of rest (even if you can't exactly sleep), and EXERCISE to increase your lung capacity (or prevent it from deteriorating).

Bravo to you, with your comment "I will not let this disease become who I am but just an annoyance that I will deal with as needed." GREAT to put this into practice! For me, NTM/MAC is way, way on the back burner of concerns in my life, and will never define who I am. Too many other things to do in this life! And there is really nothing to be scared of, with the diagnosis of NTN/MAC. To me, Cystic Fibrosis would be more of a concern.

There's a lot of very good information in the posts. Like @lindam272 did, try reading thru the many pages of the posts, and copy and paste those that are important to you into a MS Word document so you can easily find the info. Be sure to have your eyes examined by a good ophthalmologist since one of the drugs can cause blindness. I am now almost deaf in one ear from the drugs, but this is nothing when compared to the thought that, upon my initial consultation with a pulmonologist, I had lung cancer. Many CT scans look just like lung cancer, so in those cases a lengthy consultation with a good Dr and biopsy is needed.

Merry Christmas and happy holidays to you.

Paula

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@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Hi, Paula, I have a question for anyone here that I haven't seen addressed anywhere on the forum - Do you all restrict yourself to places with lower elevations? For instance, I live in Phoenix, AZ which is about 1,000 ft above sea level. Many folks in AZ go up north to Prescott, Flagstaff, etc - mountains that have higher elevations. I visited Albuquerque, NM a few years ago before I was ever diagnosed and had a tough time just walking level ground. That is about 8,000 ft elevation. Any time I think about traveling somewhere, I look at what the elevation is before making a decision to go. Anyone else?

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I have also been diagnosed with MAC. Started one treatment, but in so doing I was taken off my blood pressure medicine and it went out-of-control. Was in the hospital for several days. Scared to try again.

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@kwilbur

There is always a solution isn't there? My best time is afternoon when I really have to clear my lungs. I will try.

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Linda, you ask "Do you all restrict yourself to places with lower elevations?" That you had difficulty with higher mountainous elevations in AZ and NM. This only happened to me once - I had real difficult breathing when we climbed the Arenal Volcano in Costa Rico 4 years ago - thought I wasn't going to make it. The two things to consider -- your comfort level, and the advice of your pulmonologist.

Can others from Arizona chime in here with their experience?

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