(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

@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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The only way we will get this pushed is to find a famous person that has this I guess. Or find a famous person to be an advocate. Maybe a parent or sibling had it. Or one of us needs to win the lottery or do something to become famous.

Liked by ginak

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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I’m working on the latter…Publisher’s Clearinghouse Sweepstakes…

Liked by tdrell

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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@irene5 That’s what I assumed. The key is the “susceptible host”. And we certainly are. I think TB is contagious because someone with TB can give it to another without getting it directly from the environment (water, soil, etc). MAC doesn’t go from person to person. Anybody who is susceptible can get it independent of another person as long as the environment is there. That is my understanding of it.

Liked by tdrell

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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You better win

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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That’s funny! I waited for years for Ed McMahon to pull up in my driveway!

Liked by tdrell

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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I also have another rather rare disease – Anklyosing Spondylitis – a type of arthritis not heard of often.  Those AS people have gotten together, made a newsletter, and collected enough money (from sufferers, I think) to fund some research.  They have found several genetic markers.

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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My understanding is there are over 100 varieties of MAC types of bacteria. They normally live in the environment, not in people. There are many antibiotics in nature and the MAC become good at becoming immune to various antibiotics as they encounter them, so when people with MAC take antibiotics, the bacteria can quickly become immune to them. The hope is to find one they can’t become immune to so quickly.

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@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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Yes, you are right, but the air contains dust, which is soil (especially Arizona, where I am) !

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@irene5

Just so you know I too have the same back issue as you and am on the big 3 as well. (You only mentioned two). I pray you do well!

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Yes, I add about 1 ml saline to the 3 ml albuterol 4 times a day when I use my nebulizer. I’m not sure how much saline to use. As far as art, I have mostly done watercolor, but have done some oils and acrylics. It’s a hobby that is compatible with sitting.

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Hi Jen, I am also in the medical field and I think like you. My mother has been diagnosed with MAC/MAI with the bronchiectasis. There is a child a week being diagnosed with just the bronchiectasis in New Zealand , most of them from the surrounding islands. The doctors are saying that now they are susceptible to get MAC. From what I have read bronchiectasis is : the lung damage (cilia) that prevents or inhibits you to cough up and out the bacteria around us. So the bacteria- Avium complex (depending what bacteria is found and if its MAI or MAC) sits in the sputum, mostly in the middle or lower lobes and GROWS. Now you have MAC/MAI. This reminds me of MRSA, and other “opportunist bacteria” that are all around us, but now people’s own immunity cant fight it any longer. I want to know what is damaging the lungs to fight this off. My goal is to get patients to fill out more information who are diagnosed with this, to find a connection. The kids in New Zealand have had whooping cough and other “child” ailments that lead to the cilia damage or bronchiectasis. hmmm.

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@pkayh

I was surprised to find a person with exactly the same things I have. I have never met anyone who has bronchiectasis, let alone MAC also ! After a lot of nighttime coughing, I had a broncoscopy in 2002 after which I had a diagnosis of bronchiectasis and MAC. My doctor explained that the goal was to avoid a worsening of the disease, I have done pretty well at that, but it has progressed over these 16 or so years. I also have ankylosing spondylosis (arthritis) which is not much fun either. My doctor (s) think this arthritis has stiffened my breathing cartiledge so my lungs don’t expand properly.

I will be 80 this year and have been able to live a pretty normal life, even with those diseases. I am an artist, which is a fortunate activity not requiring a lot of movement.

I am now taking Azithromycin and ethambutol for a year in hopes of getting rid of my MAC. I seem to not be adversely affected by the antibiotics.

Anyway, I appreciate knowing there are others in my shoes to talk to.

pkayh

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Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc. I am in a stock club, too. I do go once a week to a painting group, but I don’t seem to paint at home. The trouble is, even though these activities involve sitting, you always have to get up and get something. It’s the same with cooking. Fortunately, my husband does most of the cooking. I have to spend a lot of time with my breathing activities – Vest machine, nebulizer, Acapella, cleaning equipment, exercise (I force myself to go to the Fittness Center, but it exhausts me). But I fear if I don’t I will be able to do less and less.

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In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

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@mac5ia….welcome to the site/group. I so far am not on the antibiotic treatment but am monitored at National Jewish in Denver. Many others are on or have been on Rx. They will no doubt share their valuable tips.
And also….read and view all past comments on this site. And as time and energy allows there are videos recorded at patient centered workshops that are awesome.
NTMINFO.org is a very helpful bridge…..
Again…welcome. Tdrell

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@mac5ia

In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

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I have a banana every day, Yogurt (greek) and the Probiotic recommended by the National Jewish Center, I take my Rifampin on an empty stomach and the others with food

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@mac5ia

In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

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@jkiemen i’m curious what kind of  Probiotic is recommended by the National Jewish ?Center

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