(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

@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Hi Nan, I will! I do believe I have been in your store before.
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Nan, you didn't by any chance buy a pair of sterling lotus earrings off of
me by any chance? I was in a stores on Bay St. presenting my jewelry
wholesale…..
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Ah…… I feel the same way.

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Hello! I am down south of you in Bluffton, near Hilton Head. I go to the
Mayo in JAX. My doc said stay away from Azithromax as long as possible because
it is a 'BIG GUN', save it for when nothing else works. I was put on it
nilly-willy for years prior to my diagnosis. It is a broad-spectrum drug; it is
most dr's 'go-to' drug . Did you have a sputem test prior to getting this
prescribed for you?
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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@janovr, love your attitude! I do think mental outlook and attitude is 50% (or perhaps more) of the battle with NTM — not that NTM isn’t a real disease. But it’s a chronic, sometimes life-long disease that many of us will need to partner with a pulmonologist to manage it. Sort of like diabetes or severe high blood pressure, etc. I echo your thoughts, that I too ” … do not have my head stuck in the sand….I just refuse for this disease to define me and my life.” Bravo to you!

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Hi Paula, I feel the same way, this disease will not take over my life! It
did foe awhile (admittedly), but now, I choose to live carefully in denial I
guess. It is working out good for me so far. Mind, I keep on top of my med
regimen, exercise, eat right, etc.. but otherwise , try to forget that I have
this disease.
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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You’ve sure got the right idea, @windwalker – Other than the meds (and many are asymptomatic and not on meds), I think plenty of rest and EXERCISE that will open your lungs is crucial! For people who aren’t into exercise — that was me a decade ago! — start small, walking a little each day and then find a good Intro Yoga or Pilates class.

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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OMG, Girl! You are me all over again.
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Dr. Colin Swenson
Emory/St. Joseph’s Hospital
Atlanta, GA

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Paula, I do a one hour three times a week cardio class. It has made a HUGE
difference. I can now dance all night!
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Hi Jan, I have not seen previous posts about this. Is this Dr really
good?
 

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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Yes. He has common sense. He knew what the meds did to me. My sputum culture did show I was on the correct antibiotics, however my body totally collapsed while taking them.
We are in a “wait mode” and I am doing great!

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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@windwalker – I don’t think many people with NTM or breathing issues fully realize how great are the BENEFITS OF EXERCISE! I sure didn’t . . . but came on board pretty quickly after my diagnosis and my pulmonologist’s advice about exercise.

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@tessie

@megan123. I wanted to comment I also live in Toronto North York. I find it unbelievable they don’t know what is cause of MAC. I hope they discover soon. Regards. Tessie

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Hi @megan123,
You’ll notice that I removed your private phone number from your message to @tessie. to keep you and the community safe, we recommend using the private messaging function to share personal contact information. You can read more in the Community Guidelines here: https://connect.mayoclinic.org/community-guidelines/

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@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn’t clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn’t have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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I second that opinion, Paula! By reading other’s posts on this forum and then reading Beating Bronchiectasis, also touting the benefits of exercise, I hopped on the bandwagon. I was already working out with a trainer twice a week but had to stop from last Nov through Feb of this year when my MAC was so bad. Once I was on my meds for a couple of months and felt I could breathe again, I went back to the gym but also joined the YMCA – completely paid for by Medicare’s Silver Sneakers program, and now I’m incorporating yoga and some other classes. The yoga has benefitted me tremendously. I do a therapeutic yoga class so nothing strenuous. It’s not only helping me breathe better, but helping balance and strength too. I highly recommend yoga or pilates or any kind of movement. It works! Linda

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