(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

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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@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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Kathryn,
Another option for getting a sputum sample is a bronchoscopy. I never cough up enough so that’s what I had done after my CT scan. I’ve read other posts of people that say they also can’t cough up enough so they too have to go that route. I agree with Katherine – not from experience but I’ve read an incredible amount and read a lot of posts on this site and another and I’ve never heard of a Dr. telling someone they absolutely won’t be able to work. Listen to Katherine – yes, life will change. But, with support you will and can deal with it. It is frightening at first until you do your research. Knowledge really is power. Makes you feel more in control of the situation.

As an aside, I was unfamiliar with the lung cleansing you mentioned. Can anyone else explain that one to me? That’s not something I’d ever heard of. Best of luck, Janet

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Janet
My MAC was found by bronchoscopy also, as I cannot produce sputum, so maybe we can’t cough anything up to clear out lungs. I have a lot of pflegm in my throat, but the MAC is deep in my lung in a cavity in the upper right lobe.

My Mayo Clinc doc did tell me that not having a productive cough does not mean anything bad or good. It does not mean the MAC will grow faster, but it might be more comfortable to relieve the mucous she said. I found that somewhat comforting. I know people are always talking about clearing here, so maybe that’s only accurate in some cases.

What were you told?
Thanks
Kay

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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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Janet and Kathryn, I agree .. this “lung cleansing” thing .. never heard or read a thing about it .. ever! Anyone else chime in? Katherine

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Kay,
I too had trouble producing a sample but it seems that once the infection clears a bit, your body figures out what it needs to do and it becomes easier to clear your lungs. After 6 yrs, I feel what I have left is the effects of broncheitasis (contracted from the MAC). My samples from the MAC have been negative for 2 yrs .

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@kwilbur

I have tried to give a sputum sample but I live in the country over an hour away from a lab and, so far, have not been successful. The pathologist’s report and the nodules I can see on the scan, plus my doctor are all the information I have had so far. You have given me good questions to ask my doctor and I must do that sputum exam if it means standing on my head in his office! I am so tired now , I can’t imagine having less active time. But thank you and wish me luck as I start the year. Very best, Kathryn

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@kwilbur (Kathryn),

I’ve never provided a sputum sample. Perhaps it was because my CT scan showed potentially serious stuff – I don’t know. I’d always been quite healthy, am not a smoker but at that point was coughing up blood. My internist got me in to a pulmonologist in 2 days and the following Monday I had a bronchoscopy, the results of which were sent to 2 different lab areas — one to find pathogens or bacteria or fungus, etc, and the other to find cancer cells. My pulmonologist called me that evening to let me know that one set of cells were growing bacteria like crazy (very good news to all!) – but a final determination of NTM/cancer/etc. was a few days away. It’s SO important to get the correct diagnosis because if I had a fungus infection or lung cancer and they treated me for NTM/MAC, it would be devastating.

Best wishes to you on this journey.
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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@kwilbur (Kathryn) and @justjanet

I worked 50-60 hrs a week as a software database systems developer for the past 12 years. I found working took my mind off my illness. And it helped keep up my stamina. This disease was not going to get the better of me! I also began an exercise program thru my employer’s wellness program – at the suggestion of my pulmonologist. I needed to strengthen my good lung and build stamina. It was very difficult for me at the beginning! But today I still do these exercises. Big difference. Had a cardiac stress test a few months ago, and the cardiologist was amazed at my stamina, considering my lung issues – he asked my routine and where I’d be if I weren’t doing exercises for my lungs.

Never heard of a doctor saying you couldn’t work . . . even oncologists treating serious cancer.

All the best,
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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@justjanet,

I’ve had a diagnostic lung lavage which may be the lung cleansing mentioned earlier. I had this several years after my last bronchoscopy. It’s to collect cells from various parts of the lungs for analysis. Quite painless.

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@kwilbur

Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria but my chest scans are showing indications. My doctor, who I trust and regard highly, has recommended chest scans every three months. When it comes time he will cleanse my lungs, as I understand with a saline solution and begin antibiotics. What concerns me so much is that I am told I will not be able to work for 16 months. I am on my own and have worked as a teacher at the same school for 31 years! And, yes, I love the kids. It makes me so sad to think I will have to stop – also risking losing my house.

This is the first time I have seen a site where other people talk about their experiences. I am sixty-four and am also working with a very proactive internist to help me through the weakness and weight loss.

Well, I guess this is the beginning of my journey. And I WILL keep educating myself. Very best, Kathryn

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Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

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Kay,
My bronch. is in the lingula and right middle lobe and my MAC (nodules)is in right middle lobe and posterior left lower lobe. I wasn’t told much by my doctor at Duke. But, when they were wheeling me in for the bronchoscopy she said “well, you must not have it very bad if you can’t cough up a sample on your own”. That was just another reason I knew I needed to switch Dr’s. I probably don’t have a severe case now. But, whether a person can cough up sputum on their own or not has nothing to do with the severity of their disease. Even I know that much from my research. So ixnay on that doc :). Luckily I found another. Tomorrow I have several appts at UNC Center for Bronchiectasis Care. They also specialize in the treatment of NTM’s. I think they will be able to give me much better answers on how I should proceed. I may not need treatment yet as my symptoms aren’t bad – lack of appetite is the worst of them. But, I have lots of questions and it will be nice to talk to someone I trust knows a lot about this. I’ll let y’all 🙂 know what I think of the clinic. It might be a good resource for anyone that is close to Chapel Hill, NC. We have so few places like that to go to. I would like to learn more about clearing my lungs. There are times when they feel “full” and I know from reading these posts that there are exercises that we can learn to help clear some of that. Maybe I’ll learn more about that tomorrow too. I’ll let you know. Janet

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Janet, LOVE your spunk! By golly .. only WE can be the best advocates for ourselves .. trust our gut feelings .. and NOT give up until we find a doctor who will listen to us and is KNOWLEGEABLE about our disease! I’ll be really interested in what you find out about Bronchiectasis .. I know I was so intent on healing from the MAC that I have never paid enough attention to my Bronchiectasis .. despite it’s lingering effects .. and the continuing coughing! Let us know what you have learned! We are all on this journey together .. shared knowledge is powerful! Hugs to you and good luck with your appointments! Katherine

REPLY
@kwilbur

Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria but my chest scans are showing indications. My doctor, who I trust and regard highly, has recommended chest scans every three months. When it comes time he will cleanse my lungs, as I understand with a saline solution and begin antibiotics. What concerns me so much is that I am told I will not be able to work for 16 months. I am on my own and have worked as a teacher at the same school for 31 years! And, yes, I love the kids. It makes me so sad to think I will have to stop – also risking losing my house.

This is the first time I have seen a site where other people talk about their experiences. I am sixty-four and am also working with a very proactive internist to help me through the weakness and weight loss.

Well, I guess this is the beginning of my journey. And I WILL keep educating myself. Very best, Kathryn

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Lilianne, what a great response to Kathryn! Each of us has had a different journey .. but yet the same journey .. and I think it helps SO much that we all share our own unique perspectives so that new people see how each body and experience can and is different so they know not to be concerned .. that THEIRS will be their own journey .. NOT just what they may read about in one individual posting.

Hugs to all on our indeed shared journey! Katherine

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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.

Jump to this post

Thanks Paula .. that may be the explanation .. thanks! Because I have read that with sputum .. it may be from just one area of the lungs rather than various parts of the lungs. Interesting .. than you! Katherine

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@suttonmac2009

Kay,
I too had trouble producing a sample but it seems that once the infection clears a bit, your body figures out what it needs to do and it becomes easier to clear your lungs. After 6 yrs, I feel what I have left is the effects of broncheitasis (contracted from the MAC). My samples from the MAC have been negative for 2 yrs .

Jump to this post

I am so happy for you. I seem to have started with bronchieticus and have
my c-scans show evidence of MAC. I will get that sputum sample in though
before any intervention. I just don’t know what I have. I do understand
James statement about the isolation of fatigue. I used to be so active
and involved in so many community events. Wishing for better days! But
I love the courage and advice I find on these posts.

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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 Paula. I actually went to a parking lot, lay down, and tried my
best. The result was nothing. It is good to know that the C Scan can be
a route to diagnosis.

You all are so wonderfully courageous… and so healthy in mind. You make
me feel better and so less alone.

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