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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 9, 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

@boomerexpert , You are absolutely right! An occasional meeting???! More needs to be done. Lets bombard their butts with letters!!!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 9, 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

Jump to this post

@pkayh , Hello Pat! Welcome to our forum. You are in good company here, we all have the bug. I hear you (about the exhaustion). I am 59, my spirit wants to do so much and have ziltch in the way of energy to do it. You've done good girl; to get this far. I find that if I do a little, then rest for 20 mins., do a little more, rest for 20 mins., etc. I eventually get the job done. I, too, am an artist, but find I that I don't have it in me to paint anymore. I tried yesterday, but gave up. I also make jewelry, but even that is a choir anymore. It is hard to explain. You would think that sitting in place and working on these projects would be a breeze.....but I just don't have the creative juices and passion any more. I think my brain has shifted to the left side. I enjoy math, and numbers and day trading. Who knew???! I have to wonder if we all could benefit from accepting a shift in life when chronic illness becomes our reality?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 9, 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!

Jump to this post

@pkayh , Pat, do you also do the inhaled saline treatments several times a day? Also, what kind of art do you do?

REPLY
grannyred | @grannyred | Jan 10, 2018

Hi. I am new to all of this and trying to understand everything. I am waiting for a new sputum test result and the worse is the waiting. I have not started any medications as yet as my doctor wants to see the new results before proceeding. I am very happy to have found this group as I always feel that knowledge is power but it can also be scary. Thank you all for your words of kindness and wisdom on this disease Anne

REPLY
7 replies
Jo Ann K | @jkiemen | Jan 10, 2018

We sadly are all doing the same. Waiting. Waiting for cultures, treatments, test results. It is nice to have this group to share this with.

REPLY
unicorn | @unicorn | Jan 10, 2018

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

REPLY
19 replies
unicorn | @unicorn | Jan 10, 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

I'm not going to last 3 years....this seems simple to eradicate to me. A delivery system to the lungs to kill a bacteria, how difficult can that be? It's not a virus, those are the bad guys. They just aren't trying. .

REPLY
joan912 | @joan912 | Jan 10, 2018
In reply to @unicorn "Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid..." + (show)
@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

Jump to this post

My husband complains of heart issues with the medication. He also has a hiatal hernia and has stomach problems which are exacerbated by the medication. Once he told that to his pulmonologist and infectologist, they both suggested he not take the pills at all. So, I guess the medication is as bad as the disease. I so wish there was an easy cure. Maybe the Nitric Oxide will be that cure.

REPLY
Jo Ann K | @jkiemen | Jan 10, 2018

I get palpitations after eating and at times at night. It might be good to ask your MD for a heart monitor to wear and capture the episodes. I used one a while back but I was having them before I started the medications too. It happens off and on.

REPLY
2 replies
irene5 Irene Estes | @irene5 | Jan 10, 2018
In reply to @unicorn "Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid..." + (show)
@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don't want anything else wrong with me!! Enough is enough. Cheers, Christa

Jump to this post

You should have had an EKG prior to starting the meds. You need to report these symptoms ASAP. I am not trying to alarm you as it may be nothing. However, my ID doctor said one of the meds causes heart arrhythmias so you should probably give your doctor a call.

REPLY
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