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.

boomerexpert | @boomerexpert | Jan 8, 2018

I've received a response from the FDA as follows:

"Thank you for writing the Division of Drug Information in the FDA's Center for Drug Evaluation and Research.

We appreciate you for taking the time to share this information and your concerns with us about mycobacterium avium complex (MAC) and other nontuberculous mycobacteria (NTM).

Please understand that FDA takes conditions such as MAC and other NTM infections very seriously. The FDA has a Patient-Focused Drug Development Initiative, which is a commitment under the fifth authorization of the Prescription Drug User Fee Act (PDUFA V) that aims to more systematically gather patients’ perspectives on their condition and available therapies to treat their condition. As part of this commitment, FDA is holding at least 20 public meetings over the course of PDUFA V. In October 2015, a meeting was held on NTM lung infections. You may find information about the NTM meeting held in October at: The Voice of the Patient: Non-Tuberculous Mycobacterial (NTM) Lung Infection (PDF - 860KB) and Public Meeting on Non-Tuberculous Mycobacterial (NTM) Lung Infections Patient-Focused Drug Development.

Additional information about the Patient-Focused Drug Development Initiative can be found at: https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm326192.htm.

Finally, the Center for Disease Control and Prevention (CDC) is one of the major operating components of the Department of Health and Human Services and is the agency that tracks infectious diseases. You may contact the CDC for more information at: 800-CDC-INFO (800-232-4636), TTY: 888-232-6348 Or Email CDC-INFO."

I've done 2 things in response:
1. sent my same earlier message to the CDC as recommended
2. urged the FDA to do more than hold a meeting every 3 years...

REPLY
5 replies
irene5 Irene Estes | @irene5 | Jan 8, 2018
In reply to @boomerexpert "I've received a response from the FDA as follows: "Thank you for writing the Division of..." + (show)
@boomerexpert

I've received a response from the FDA as follows:

"Thank you for writing the Division of Drug Information in the FDA's Center for Drug Evaluation and Research.

We appreciate you for taking the time to share this information and your concerns with us about mycobacterium avium complex (MAC) and other nontuberculous mycobacteria (NTM).

Please understand that FDA takes conditions such as MAC and other NTM infections very seriously. The FDA has a Patient-Focused Drug Development Initiative, which is a commitment under the fifth authorization of the Prescription Drug User Fee Act (PDUFA V) that aims to more systematically gather patients’ perspectives on their condition and available therapies to treat their condition. As part of this commitment, FDA is holding at least 20 public meetings over the course of PDUFA V. In October 2015, a meeting was held on NTM lung infections. You may find information about the NTM meeting held in October at: The Voice of the Patient: Non-Tuberculous Mycobacterial (NTM) Lung Infection (PDF - 860KB) and Public Meeting on Non-Tuberculous Mycobacterial (NTM) Lung Infections Patient-Focused Drug Development.

Additional information about the Patient-Focused Drug Development Initiative can be found at: https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm326192.htm.

Finally, the Center for Disease Control and Prevention (CDC) is one of the major operating components of the Department of Health and Human Services and is the agency that tracks infectious diseases. You may contact the CDC for more information at: 800-CDC-INFO (800-232-4636), TTY: 888-232-6348 Or Email CDC-INFO."

I've done 2 things in response:
1. sent my same earlier message to the CDC as recommended
2. urged the FDA to do more than hold a meeting every 3 years...

Jump to this post

Thank you for taking the time and energy to do that. Yes, when I read 2015 I was mortified. Good grief. Thank you boomer expert for advocating for us.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 8, 2018
In reply to @franthony "How do I post in this forum? I just joined today, and was just diagnosed with..." + (show)
@franthony

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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Yes I did, @nick52. So now you know how to send a private message. Of course, posting messages to the group discussions benefit many. However, private messages can be useful to share personal contact information, etc.

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pkayh | @pkayh | Jan 8, 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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I am puzzled by the ultra disinfecting processes. I thought MAC could be found in air, water (even in hospitals), and soil (dust) so how can it be avoided? My doctors have also thought I have it because my ankylosing spondylitis stiffened my breathing cartilage so my lungs can't expand fully, leaving areas in the lungs susceptible to MAC, which is everywhere??

Pat

REPLY
pkayh | @pkayh | Jan 8, 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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Thanks for the information.
Pat

REPLY
heathert | @heathert | Jan 8, 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

@pkayh I dont think we can avoid it completely but I guess they suggest avoiding it as much as we can so it doesn't mount up and get out of control. But disinfecting also kills the good bacteria that kill the MAC. Its very complicated so I guess we all need to make or own decision or go by the experts(who dont even know everything unfortunately). All the best

REPLY
irene5 Irene Estes | @irene5 | Jan 8, 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

Yes MAC is everywhere. I think we are all trying to limit our exposure from known sources as much as possible so as not to continually reinfect ourselves.

REPLY
cathyxyz | @cathyxyz | Jan 9, 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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It sounds like you are on the road to recovery. Can you tell us where you got your plan? I am herbs and other immune building factors.

REPLY
pkayh | @pkayh | Jan 9, 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 just follow the plan my pulmonologist outlined for me: exercise, albuterol, vest machine,  nebulizer, and postural drainage (by position).  I am not on the road to recovery, but I have lasted at least 16 years with bronchiectasis.  It is getting worse slowly.  More shortness of breath. 

REPLY
pkayh | @pkayh | Jan 9, 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

Yes, I suppose that is what I try to do.

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