(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

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 .

@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

@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

@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?

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.

@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?

Annie
I started the big 3 in late July and continued my BP meds. I take 4 as I’ve had high blood since I was 20 and it’s through the roof without meds. The Rifampin makes it go up, so I’m constantly monitoring. I have to exercise and gets lots of sleep. I’ve lost weight since I started the meds, nausea on and off. I TRY to eat lots of veggies (had boiled dinner and salad for dinner- 7 servings in one meal).

What were u taking for MAC ? Maybe it didn’t absorb w the BP Med? Ask them, as u should be able to stagger all your meds and not take together. It’s a pain to take all this stuff, it bothers me if I let it. But the choice for me is having cavitary MAC grow, and that keeps me on track taking my drugs;-)

Take care Annie (that’s my daughter’s name! She’s an angel.

Kay S

@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! In response to Linda’s question about elevation being a factor in
lung function: Yes, it does. I lived in Tucson, Az. for 20 yrs. I moved to
Hilton Head, S.C. in 2012. My oxymeter reading was 90-91 while in Tucson; since
the move to sea level, it is now 95-97.    -Terri
 

@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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I have Mac too. I live in Lake Mary, Fl

@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 Cathy!
 
     Are you having it treated? If so, how?
 
Terri
 

@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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I am beginning to think something weird is going on that so many women have
MAC these days.
 

@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,
 
    I highly recommend the Mayo Clinic in Jacksonville. That
is where I go.
 
Terri

@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Colleen how can I move all of my Mayo Clinic posting to a different email address. So I can read them at a time that suits me? Thanks!

@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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Marie, I am also new to MAC. I am currently taking Azithromycin, Rifampin, and Ethambutol plus I just finished 14 injections (twice a week) of a VERY VERY painful Amikacin Infectious Disease says I will be on meds for 18 months or longer.
Last April (2016) I felt as if I had Pneumonia with a persistent hacking cough (having had it a few times in my life). Primary doc gave me antibiotics but made no recommendations. A week later I was in the emergency room where they took an x-ray then a CAT scan and many blood test. After the CAT Scan they came back and said both upper lungs were filled and made a followup visit with a critical care pulmonary specialist. I live in Trinity, Alabama (no were close to a major MAC research hospital) The specialist scheduled a bronchoscope where he took biopsies and did a saline wash of my lungs. He determined through the biopsy that I have MAC and have been on daily meds since July 2016. He then recommended I see an Infectious Disease specialist who seems to know more about MAC. BUt, one of the resources I have used the most and has answered many of my questions are the forums like this one and the National Jewish Hospital patient portal. Recently they added the MAC conference videos for 2016 these and others have been very helpful for me. My account currently will not let me post the link at National Jewish Hospital search for ntmvideos2016

@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Hi @cowboy1997
Here’s how to change your email address:
1. Go to Account Settings https://connect.mayoclinic.org/account/
2. Enter the new email address.
3. Scroll to the bottom of the page and click “Save Profile”.

While you’re on Account Settings page, you may wish to tick the check box that says “ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.” That way you’ll only get the information you’re interested in.

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