(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

@garry

Thank you for that info . I never heard of the saline so i got bottle of =
9% across the counter. I put it in my nebulizer. I see the dr on wed so =
I will ask for the 7%. I was asked for a sputum sample but i was not =
able to bring anything up. I never saw the point because I am on =
antibiotic's. Is it not suppose to kill the mac so how can there be a =
reading??

>

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Hi Garry, did you get 9% or .9%? Tricky little decimal point! Point 9% is the normal amount of saline we have in our bodies and won't do much as far as causing your lungs to cough up sputum. 7% has seven times as much saline and comes in 4ml vials. I thought that 7% requires a prescription but someone recently said that you can get it in Amazon without a prescription.

The sputum sample will show if the antibiotics you are taking are working to kill your particular lung bacteria. They don't work for everybody and when they do work it some times takes a while before there is progress.

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@prichard

I had a pet scan that showed a nodule on my lung and a lymph node that sort of lighted up. I can have a biopsy on the node or wat h it for 3 months then a cat scan. I had no symptoms at all. They found this when I had pnemonia 2 months ago. What should I do

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Bummer! I guess what you decide to do depends on your personality. The doctors saw something when you had pneumonia and ordered the pet scan to see if it's cancer. Apparently the results of the scan are inconclusive. So, are you the type of person who can put the worry aside and go on with your life for three months while waiting to get the ct scsn? Or, are you someone who wants to know NOW? A biopsy will give you the answer regarding whether the nodule is cancerous or not now. Up to you.

Good luck whatever you choose to do.

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@rits

Hi Garry, did you get 9% or .9%? Tricky little decimal point! Point 9% is the normal amount of saline we have in our bodies and won't do much as far as causing your lungs to cough up sputum. 7% has seven times as much saline and comes in 4ml vials. I thought that 7% requires a prescription but someone recently said that you can get it in Amazon without a prescription.

The sputum sample will show if the antibiotics you are taking are working to kill your particular lung bacteria. They don't work for everybody and when they do work it some times takes a while before there is progress.

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@garry @rits Good Catch Rits! Sounds like .09 saline for injection (lactated ringer bags) and Not for respiratory inhalation. (not sure it would hurt but wouldn't nebulize it if I were you. ) Most all sterile solutions for inhalation are in the tiny premeasured ML pipets….They do not come in a bag. Garry…I would not use that and wait to get a script. Kate

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@garry

Thank you for that info . I never heard of the saline so i got bottle of =
9% across the counter. I put it in my nebulizer. I see the dr on wed so =
I will ask for the 7%. I was asked for a sputum sample but i was not =
able to bring anything up. I never saw the point because I am on =
antibiotic's. Is it not suppose to kill the mac so how can there be a =
reading??

>

Jump to this post

@garry I'm with Rita – if you got it locally without a scrip, you have.9% – if you want to kill MAC you need 7%. Current research shows 3% is not enough, even though it may be enough to bring up mucus – which is fine if you don't have MAC
As for the sputum sample, how was your MAC diagnosed?
First, a sputum culture is necessary to confirm MAC versus another infectious agent, and takes anywhere from 4-8 weeks to grow. When first diagnosed, there was so much MAC in my sputum that it was confirmed in 4 weeks, now it's still there but takes about 7 weeks to show. Second, the culture needs to be subjected to sensitivity testing to be sure the right drugs are being used. My docs use the state dept of health lab for the culture and National Jewish Health lab in Colorado for the sensitivity testing.
In my case, after the initial round of antibiotics, I wasn't producing much mucus, so I would neb with 10% saline to bring up sputum – believe me, it irritated mightily and got me coughing stuff up in minutes.
The point of sputum testing, in addition to initial diagnosis, is to determine how long to treat with antibiotics. Depending on the severity of bronchiectasis, and your other symptoms, typical treatment is 6-12 months after sputum no longer shows MAC. My case was a little different. After 18 months lung CT was clear and cough was rare and produced clear sputum, but MAC was still present. The long term antibiotics were taking a toll on body and life, so the doc stopped them, and I'm using 7% saline, hoping it will eradicate the bacteria, or at least keep more from growing.
I would never have known the questions to ask, or what to expect, without the support of this group. Here's hoping you get good results from your visit tomorrow.
Sue

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Please, please tell me how I can get to the most recent posts without going through all of the prior from 2011 and on? I spent a half hour trying to get through them and then lost the whole thing. I would like to get the comments from 2018 and forward to get the lastest information on MAC and bronchiectasis which I have been diagnosed with. My Dr wants to go on the 3 drug plan for 18 months and I would like updated information on the subject of results of those who have tried it and perhaps other treatment possibilities.
Thanks. Would really be appreciated.
Sharon D

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@pal131

Please, please tell me how I can get to the most recent posts without going through all of the prior from 2011 and on? I spent a half hour trying to get through them and then lost the whole thing. I would like to get the comments from 2018 and forward to get the lastest information on MAC and bronchiectasis which I have been diagnosed with. My Dr wants to go on the 3 drug plan for 18 months and I would like updated information on the subject of results of those who have tried it and perhaps other treatment possibilities.
Thanks. Would really be appreciated.
Sharon D

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There should be a box on the right side of your screen that says oldest to newest…and I think there is an arrow that if you click on, it says newest to oldest, that will bring up the newest posts instead of the oldest ones first.

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@pal131

Please, please tell me how I can get to the most recent posts without going through all of the prior from 2011 and on? I spent a half hour trying to get through them and then lost the whole thing. I would like to get the comments from 2018 and forward to get the lastest information on MAC and bronchiectasis which I have been diagnosed with. My Dr wants to go on the 3 drug plan for 18 months and I would like updated information on the subject of results of those who have tried it and perhaps other treatment possibilities.
Thanks. Would really be appreciated.
Sharon D

Jump to this post

Just under the topic's first post, which on my screen is blue, there is a series of boxes for pages and right under that a box says "oldest to newest." If you click the drop down, it will say "newest to oldest". If you pick that one, you will find the latest post first and how long ago it posted. I skip down to the last time I looked at this site, usually a couple of hours. I read that one and move up and up to the most recent.

I hope this makes sense. Until I figured if out, like you, I was frustrated.

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@pal131

Please, please tell me how I can get to the most recent posts without going through all of the prior from 2011 and on? I spent a half hour trying to get through them and then lost the whole thing. I would like to get the comments from 2018 and forward to get the lastest information on MAC and bronchiectasis which I have been diagnosed with. My Dr wants to go on the 3 drug plan for 18 months and I would like updated information on the subject of results of those who have tried it and perhaps other treatment possibilities.
Thanks. Would really be appreciated.
Sharon D

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Hello Sharon
My wife had MAC (cavities) and bronchiectasis. She was on the 3 big medicines for 2 years and was feeling well while taking them. Stopped for 3 months and unfortunately MAC is back and pseudomonas. Her Dr put her back and the 3 antibiotic (MAC) and Tobramycin for pseudomonas (inhaling), she had been taking them for around 2 months and the situation is better now in general. Waiting for infection disease specialist to advise the best way forward. Hope this helps.

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@nnassiri

Hello Sharon
My wife had MAC (cavities) and bronchiectasis. She was on the 3 big medicines for 2 years and was feeling well while taking them. Stopped for 3 months and unfortunately MAC is back and pseudomonas. Her Dr put her back and the 3 antibiotic (MAC) and Tobramycin for pseudomonas (inhaling), she had been taking them for around 2 months and the situation is better now in general. Waiting for infection disease specialist to advise the best way forward. Hope this helps.

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@nass Did you ever get her susceptibility results?

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Not yet. Next visit to her plumonogist will do

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Hi all, Today's member spotlight features @sueinmn. Read her interview to learn more about Sue: what brought her to Mayo Clinic Connect, and a peek at her favorite pastime and quote that inspires

– Each Day is an Opportunity to Learn: meet @sueinmn https://connect.mayoclinic.org/page/about-connect/newsfeed-post/each-day-is-an-opportunity-to-learn-meet-sueinmn/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc…but I still continue to cough. Should note that pulmonary function tests are normal

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@lynn55

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc…but I still continue to cough. Should note that pulmonary function tests are normal

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@lynn55.. I found relief from constant cough through acupuncture treatment of nerves. My Dr figured that half my cough was due to irritated nerves and the treatment worked. I use nebulizer asthma treatments and GERD treatments plus sleep upright. No exacerbations for 2 years.

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@lynn55

Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for COP stabilized me until 12 months later in 2015 when productive cough returned and sputum cultured M. Abscessus. PICC line and IV antibiotics for 3 months stopped my cough and C-T scans improved. Through all of this I continued to work and exercise including using an incentive spirometer daily. Moved states twice now with this diagnosis and changes in treatment and doctors continue to show me that I have to be my own advocate. In 2017 I started coughing productively again and cultured MAC. Treatment for 24 months did improve my C-T scan and cough, but did not convert me. I was taken off treatment to see how I did and 7 months later I have a dry cough that is consistent and low energy. Bronchiectasis is extensive but mild and last C-T was in Nov. 2019. This dry cough is new for me since normally I don't cough at all unless it's productive. Coughing all day is exhausting! Had blood work and scan done today and leaning toward having a scope to get a specimen to culture. Anyone else have a dry cough that won't go away? I've heard things like reactive airway etc…but I still continue to cough. Should note that pulmonary function tests are normal

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I have a dry cough one or two times per day, prompted usually by a chill or sometimes even an icy drink. Several months ago, a member introduced us to a honey syrup from Mexico called Broncolin – purchased from Amazon.com. It is made from natural plant extracts and propolis (Google this to see how helpful this "bee glue" used to hold hives together, works as a natural antibiotic). Both the syrup and cough drops have been fabulously helpful to me. And, as a plus, my 12 yr. old grandson said it cured him of a sore throat almost immediately! Would like to thank the gal who recommended it but didn't take note of her name. If you are reading this – Thank you so much!

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@egayle187

@lynn55.. I found relief from constant cough through acupuncture treatment of nerves. My Dr figured that half my cough was due to irritated nerves and the treatment worked. I use nebulizer asthma treatments and GERD treatments plus sleep upright. No exacerbations for 2 years.

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Thanks for the info. I have used acupuncture in the past for other things but not thought of it for this.

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