1. < MAC & Bronchiectasis

(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.

shelby | @suttonmac2009 | Aug 19, 2016
In reply to @justjanet "Kay, My bronch. is in the lingula and right middle lobe and my MAC (nodules)is in..." + (show)
@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

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Its hard to know if the amount of phem is from the infection or just trapped mucus from scarring (broncheitasis). After the infection clears , you'll have a better idea what condition of your lungs are in. I dont feel I've had much change in the amount of mucus in the last 4 yrs. Perhaps it's because I havent had any colds, infections, etc to make anything worse. I think my case is rather mild since I never had childhood lung infection all my life. I was perfectly healthy until I contracted MAC. Unfortunately if I was diagnosed emmediatly I would probably have no issues.

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shelby | @suttonmac2009 | Aug 19, 2016
In reply to @justjanet "Kay, My bronch. is in the lingula and right middle lobe and my MAC (nodules)is in..." + (show)
@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

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That seems pretty typical. After a while, you won"t be so sensitive to laughing, talking, etc. Sometimes when I talked too much, Id start coughing. Your lung tissue seems to get stronger and heartier in time. Maybe keep water or cough drops. Also try supplements that help your energy level, B-12, vegetable smoothies, avoid sugars.

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Kathryn S Wilbur | @kwilbur | Aug 19, 2016
In reply to @justjanet "Kay, My bronch. is in the lingula and right middle lobe and my MAC (nodules)is in..." + (show)
@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

Thank you for your support and information. I actually had B-12 shots once a week for four weeks this summer and am on a daily supplement now. But avoiding sugar is new to me. I'll do that. I can feel / see the correlation between those sweets that we pick on at school followed by a quick drop in energy after.

I drink one Boost a day. A friend has a recipe for a vegetable smoothie which I will get Monday.

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cila | @cila | Aug 19, 2016
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@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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Paula, you don't feel tired with the MAC or the meds?  I 'm tired all the time and shortness of breath before I was diagnosed.  I'm on my 3 months meds I still get tired easily, my shortness of breath is not as bad as it used to be.  I have bronchiectasis and acid reflux.  I think my immune system is not strong enough to fight infection.  Maybe if I get enough sleep and rest I will feel better.  I try not to think about it and do the best I can to be healthy.  I'm happy I found this forum, you are nice and very supportive. Thank you so much.  Cila<br>

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cila | @cila | Aug 19, 2016
In reply to @kwilbur "Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria..." + (show)
@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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Hi Kathryn,
Its good that you have found this forum. Lilian suggest bronchoscopy, I did have that just to make sure I have the MAC and I did CT Scan. Shows I have the MAC and Bronchiectasis. I was upset and felt alone b/c nobody knows about MAC, even my own PCP didn't know much about it. This forum help me so much and the support of everyone. I will pray for you and hope you can tolerate the meds.
We are all here for you. Cila.

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Kathryn S Wilbur | @kwilbur | Aug 19, 2016
In reply to @katemn "Janet, LOVE your spunk! By golly .. only WE can be the best advocates for ourselves..." + (show)
@katemn

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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This is the "other" Kathryn once again - now I know why I called the lavage a cleaning "duh" - I'm a French teacher - laver = to clean and un lavage is a cleaning. Voila!

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cila | @cila | Aug 19, 2016

I didn't pay attention when I cough, I though that was from my sinus allergy b/c I get the yellow stuff from throat. After reading all your post I realized its from my lungs. I can't get it out overtime I cough. I never mention it to my palm. Dr. Thank you all for all your support. Praying for you all.

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1 reply
Katherine, Alumni Mentor | @katemn | Aug 19, 2016
In reply to @kwilbur "Thank you so much for your positiveness. I have not been officially diagnosed with this bacteria..." + (show)
@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

Thank you for your story Shelby .. each positive story helps new people on their journey because it is so scary in the beginning. I was diagnosed in 2007 .. and it is important for us that have come out on the other side to let people know that it DOES get better!

I SO know what you mean about the coughing .. to this day in a theatre I mention to the people beside me that I have "a lung issue .. but it is not contagious" .. BECAUSE I don't want them to be concerned that I have a cold or the flu. I want people around me to have a pleasant evening and for whatever reason I cough a LOT in close quarters .. OR when I talk a lot.

For me .. I had early menopause .. age 48 .. so I was long past menopause when I was diagnosed .. so this is a goofy disease .. seems like no rhyme or reason other than perhaps some genetic pre disposition plus compromised immune system in some manner.

I also take a daily probiotic and get plenty of rest after ending my antibiotics in May 2014 and clear my lungs twice daily. Again, thanks for your positive input! Katherine

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liliane | @liliane | Aug 19, 2016

It is interesting how this disease manifests itself in different forms for each of us. While at the same time, we seem to share many of the same conditions.
After reading all posts for the past few months, I have noticed a few characteristics we all seem to have in common: we are mostly post menopausal females, and many of us also suffer from acid reflux and asthma. These must be recognized as predisposing factors in acquiring MAC/MAI in the medical literature out there. Another pre disposing factor must be postural, like scoliosis or my own poor posture after practicing dentistry for 30+ years.
Many of you have discussed coughing and sputum production, of which I have none. No coughing at all. Ever.

Kathryn, I found it amusing that as a French teacher, you interpreted "lavage" for washing/ cleansing. As a Portuguese speaker, I completely understand what you meant! And you were right, lavage does mean rinsing the lung tissues with a biologic saline solution and then culturing all microorganisms in that solution. Unfortunately, lavage does not actually clean out our lungs. I wish!
I am happy you are finding solace in this helpful group.
Katherine, Thank you for starting and monitoring this blog!
Liliane

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Katherine, Alumni Mentor | @katemn | Aug 19, 2016

Liliane, we are all on this journey together and it has been SO heartening to me to see how our group has blossomed into such a caring supportive WONDERFUL group of people! It has just done my heart good to see how people have just jumped in to support and help each other on this journey .. adding any and all tips and information that they can think of .. never really know just what may hit some other person at just the right time on their particular journey! AND the wonderful part of this Forum is the number of posts and the fact that it is there forever for people to read to find help at the time when they are just starting their journey .. when they are the most afraid. Oh I so remember that time .. when I felt so alone and had NO source like this to turn to .. I so wish I'd had this Forum to turn to .. a "soft shoulder" to fall on as they say! So we can feel good not just in this moment when we are supporting each other .. but knowing that we are "playing it forward"! What more can we ask out of life than kindness to one another? Hugs to all! Katherine

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