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.

nannette | @nannette | Jan 4, 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

@ windwalker Hi Terri! I'm good. Ive never felt bad actually but my lungs just never look good on a CT scan. We're going to do another CT scan in March. In the meantime I bought that book Herbal Antibiotics and am going to try two of those herbs. It can't hurt.

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franthony | @franthony | Jan 4, 2018

How do I post in this forum? I just joined today, and was just diagnosed with MAC, after being treated for pseudomonas, and having my 12 year diagnosis of non- smoker's COPD emphysema to bronchiectasis. I am a little confused by this all, and as a side note, I have been perfectly fine through this transition in diagnoses. Thanks.

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7 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 4, 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

@suenfl,Hi Sue, I hope that you continue to improve. I declined the BIG 3 antibiotics in 2005 due to knowing that the mac returns in over half of the people.

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irene5 Irene Estes | @irene5 | Jan 4, 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

Thank you for that!

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irene5 Irene Estes | @irene5 | Jan 4, 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

So I’m wondering if one could take both kinds at the same time.

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irene5 Irene Estes | @irene5 | Jan 4, 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’m trying to be a tad more optimistic!:)

REPLY
lindam272 | @lindam272 | Jan 4, 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

@nannette - Thanks for the mention of that book. Which two herbs are you going to try? I just looked up the book on Amazon and I think I will get a copy too. I've been off the 3 big meds since last July. I was only on 7 months before the Rifampin started causing confusion and caused me to get in a minor traffic accident. I came close a couple of other times and realized that I had to get off the meds after only being on them 7 months. I took the meds daily and physically I tolerated them pretty well with the first 3 months being the hardest. I always have taken probiotics and continued them with the meds. I've had clear sputum tests for the last 9 months so have stabilized and feel pretty good. I wasn't very active towards the end of last year but that was due to another issue which resulted in a 2 week hospital stay and major surgery. I'm just now getting back to exercising, yoga, walking and hiking when possible. I don't plan on resuming the meds so would love to look into this herbal option. Linda

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 4, 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

@unicorn Hi there, what is going on with you right now?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 4, 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

@josephine, please keep us posted on how you are doing.

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unicorn | @unicorn | Jan 4, 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

Hi Terri, same old same old, except going to Europe in May, disease be damned. I'm getting slowly worse, little pains in lungs now but not coughing up blood. Still working out, little muscle pops on arms, so cute! Going to Mass General in March, see if anything new happening. Sent that doc clinical trial info, maybe he will know of some. xo

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