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(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

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Nass | @nnassiri | Feb 1, 2020

Not yet. Next visit to her plumonogist will do

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 14, 2020

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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lynn55 | @lynn55 | Feb 17, 2020

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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5 replies
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egayle187 | @egayle187 | Feb 17, 2020
In reply to @lynn55 "Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for..." + (show)
Profile picture for lynn55 @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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1 reply
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Helen L/Orlando | @hsletter | Feb 17, 2020
In reply to @lynn55 "Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for..." + (show)
Profile picture for lynn55 @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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lynn55 | @lynn55 | Feb 17, 2020
In reply to @egayle187 "@lynn55.. I found relief from constant cough through acupuncture treatment of nerves. My Dr figured that..." + (show)
Profile picture for egayle187 @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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spencersok | @spencersok | Feb 17, 2020
In reply to @lynn55 "Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for..." + (show)
Profile picture for lynn55 @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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My wife is in the same category, a dry cough. Coughs so hard at times until she get a headache...

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Terri Martin, Volunteer Mentor | @windwalker | Feb 19, 2020
In reply to @lynn55 "Hi all, I was first diagnosed with bronchiectasis/MAC during hospitalization with COP in 2014. Treatment for..." + (show)
Profile picture for lynn55 @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 Hi Lynn. Yes, constant coughing is VERY exhausting. I used to have that issue myself. My 'go to' relief was 'Breathe Easy' tea by Traditional Medicines. It has many of the same ingredients as another good product called 'Clear Lung'. I buy the tea in the Natural food aisle at Kroger's. Clear Lung can be purchased online through Amazon. The tea could probably be found there also. The ingredients of both have been traditionally used in Chinese medicine. There are members in this group that have used the Clear Lung and said it worked. (@nicky52 is one) Like I said, the tea helped me. It especially got rid of that tight chest feeling. I hope you find some relief.

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Terri Martin, Volunteer Mentor | @windwalker | Feb 20, 2020
In reply to @unicorn "Garry: You are right. It's more like a CT scan will show if the MAC is..." + (show)
Profile picture for unicorn @unicorn

Garry: You are right. It's more like a CT scan will show if the MAC is evolving, tree in bud, etc. but it will not diagnose MAC. In fact, when I first had a CT scan they diagnosed me with severe asthma, Luckily a savvy doc did a bronch, and sputum tests and I learned what I had but by then I was coughing up blood. 2 years of the big 3 drugs left me with tinnitus, glaucoma, really messed up bowels, stomach cramps, wierd skin rashes, heart palps, loooow blood pressure, and way under weight. Mom died at 94, dad died at 104, neither took any pills for anything!!!, the pills demolished me. Just had a CT scan yesterday so will see the progression after 2 years no drugs. i actually feel pretty good now, tired but I move well and enjoy life. Learn as MUCH as you can, you'll find you know more than some docs. Keep on top of new research. xo

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@unicorn, Hi Christa. Did you get the results back yet on your latest ct scan?

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Terri Martin, Volunteer Mentor | @windwalker | Feb 20, 2020
In reply to @garry "I use to have my tub in the basement. I have heard that about hot tubs...." + (show)
Profile picture for garry @garry

I use to have my tub in the basement. I have heard that about hot tubs. Mine now is outside in the fresh air.I have also heard that the mac virus is every were in the soil etc. I do not use chlorine in my tub . I use copper I am always cold so I find that the steam room and ht warm me up. If I was sure this was causing my mac I would get rid of it. I got mac years ago before I had a ht.

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@garry, I was in my outdoor hot tub nearly every night. I am fairly certain that I caught my mac from it. I say that because I read somewhere that one indication that it may be in there is that the ntm (mac) can cause a red itchy rash; which I did get. I also noticed that at one time our hot tub water had a 'pond' smell. I asked my hubby if he had been treating the water regularly; he said yes, but the water had not been changed in a long time. Long story short; I will not get into a hot tub, steam room, or indoor heated pool. Ever!

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