(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

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

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

REPLY

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

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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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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.

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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 .

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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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@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

Jump to this post

I am so heartened by this personal response to my posts. My pulmonologist
wants to go ahead with what you suggest when he is certain he can get a
good sample. He has cautioned me though about the strength of the drugs. I
am so worried that I won’t be able to work. I have just started my 31st
year of teaching and seem to be making the hours – 12 hours days with the
drive. You are all so inspiring. I am so glad I found this site.
Thank you.

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@justjanet

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

Jump to this post

During the summer, when I was active outdoors, I used to have to lie down
in the afternoon to clear out my lungs. It would last about twenty
minutes – I’d use a towel – before they would “calm down”. This wore me
out so then I would sleep for three hours then get up and try to make
something out of my day.

But I just don’t know when these build-ups will occur. What most of you
are saying is that I do go ahead with what my doctor has suggested – a
swabbing to diagnose, cleansing and move on from there. He is checking me
again in October.

Thank you so much

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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

Good morning – I was diagnosed with MAC in July, 2016. I take the big three daily. I still work and I feel better since I started taking the meds. Keep the faith!!! You are not alone out here. I was terrified about taking the meds, going so far as saying I wasn’t going to take any of the meds because of all of the possible side effects!!! I called my pulmo doctor crying and very upset. My pulmo reassured me that he had other patients taking the same meds, and no side effects. So now, I am doing exactly what the doctor tells me to do, I went and got my eyes/ears tested and I will be going in monthly for blood tests. I don’t know if you believe in prayer, but it works!!! Believe me!!! I might have a long way to go, but I refuse to let this “infection” take over and rule my life. I have a good support group at work, and they know when I am feeling down, and they come and lift my spirits!!! So stay the course, and start a countdown. That’s what I am doing, counting down the days I can get off the meds and my lungs are free and clear!!! Sophie….

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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

I probably am using the wrong terminology. My doctor says that he puts saline solution in my right lung three times. First a swabbing of the bacteria I believe to determine which type of bacteria I have and what drugs will be effective. I am really new at this. Sorry if I caused confusion. I am learning from you.

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@justjanet

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

Jump to this post

Kwilbur,
Can you explain what you mean by clearing your lungs? A towel? Are you just coughing a lot to get pflegm out of your throat? Is it clear? Just curious how you do this.

I have post nasal drip and have to clear my throat, but seldom does anything feel like it’s coming from my lung.

Thanks for explaining how you do this.

I know we are all different and our presentations of MAC are different.

Thanks
KayS

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

Jump to this post

Believe me, it gets better!. In 2009 I was coughing blood, dizzy, no energy. I was misdiagnosed for months but then I demanded a CT scan and the results were identified, MAC. It took 3 to 4 years before I truly felt normal. I avoided going places because I would always cough. I’m sure people thought I was a heavy smoker. I still have to clear my lungs once a day, but after that I have no other symptoms. I’m 61. As many women agree, I believe there is some relationship to menopause. I was very depleted when tested. I have since been on hormone therapy. I take probiotics and get plenty of rest. Everyone is different, but after a while it all becomes less intimidating and you start focusing on other parts of your life. You might to take a leave of work until your energy comes back, and it will. It is a long journey and I will always wonder why I would get this infection that I never even heard of, but I did and all I know is there are far worse illnesses to have.

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