1. < MAC & Bronchiectasis

(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!

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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:
- 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.

pkayh | @pkayh | Jan 6, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@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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sorry, I think you have responded to the wrong person. My trouble is bronchiectasis and MAC>

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pkayh | @pkayh | Jan 6, 2018
In reply to @irene5 "Just so you know I too have the same back issue as you and am on..." + (show)
@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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My MAC/bronchiectasis has gotten quite a bit worse the last 2 years. It was my doctor's GOAL to not progress. It seemed to work for quite a few years, since I was diagnosed in 2002. I now have very low energy, though I do go to the fitness center 2 x a week and use a vest machine, nebulizer with albuterol, and postural drainage. Have had several antibiotic regimens off and on. My biggest problem is breathing. I am fine just sitting, but any activity is difficult.

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chinasmom | @chinasmom | Jan 6, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@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

Jump to this post

@sophie1019, Thank you for that good information. The more we have in our knowledge base the better off we will be.
Take care,
Becky

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pkayh | @pkayh | Jan 6, 2018
In reply to @pkayh "I was surprised to find a person with exactly the same things I have. I have..." + (show)
@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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 I was probably too upbeat in my first post.  Since 2 or 3 years my breathing ability and energy has been steadily reduced.  My doctors seem to think I am doing OK because my finger oximeter reads 95 - 98, but that is AFTER I have been sitting still in the waiting room !  Any activity is exhausting.  
I did not understand how you "thicken your liquid".
@pkayh  

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pkayh | @pkayh | Jan 6, 2018
In reply to @irene5 "Just so you know I too have the same back issue as you and am on..." + (show)
@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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Thank you for your good wishes.

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nick52 | @nick52 | Jan 6, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

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@nannette,

Ringing of the ear can also be a problem of the liver.  All med are hard on the liver  and your liver might be congested.  My health doctor recommended Milk Thistle in liquid.  It is a big bottle of brown liquid.  I can send you a picture in your private

message. No secondary effect to Milk Thistle it is a yellow flower.

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nick52 | @nick52 | Jan 6, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

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For me herbs is the best solution. I do not feel sick at all. Keep us posted!

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luvocean | @luvocean | Jan 7, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

Jump to this post

I have ringing in my ears. I might try the milk whistle.Does the ringing go away you take it?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 7, 2018
In reply to @dcoburn "Anyone know how I can get one email a day, with the posts of that day?..." + (show)
@dcoburn

Anyone know how I can get one email a day, with the posts of that day? Can't handle the bombardment of so many...I'm trying to cut back on emails...

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@dcoburn, Scroll to bottom of this page. In gray box, left column, click on Get Started on Connect. Scroll down the list to How to Set Notifications. You will have several options to choose from.
Let us know if you need more help doing this.
Rosemary

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