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.

Jo Ann K | @jkiemen | Jan 10, 2018

I wrote the FDA and the CDC. The CDC to see why they can't track this better and feed the information to the drug and device companies. They use Nitric Oxide for Pulmonary Hypertension. Would the Pulmonologist work with a Cardiologist to use it off label?? I don't know. There are compassionate use programs but the Device and Drug company have to agree too. Is there any place in Europe that is actively doing something???? We need more advocates. It seems like Jewish National and the University of Texas are the major players in this. Does anyone go there that knows how to get us the data we need or how to get into a program if research is our only new option right now.

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2 replies
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

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i should point out he had both conditions before starting the meds, too.

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irene5 Irene Estes | @irene5 | 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...

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It is frustrating and discouraging. I’m sure I could apply several “wordy dirds!” I definitely feel your anguish! So sorry!

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Jo Ann K | @jkiemen | Jan 10, 2018

We all need to bombard the FDA and CDC with our letters.

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unicorn | @unicorn | 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

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Yup I am right there with your husband. Its like dominoes, one affects another and another. I eat low fat organic, and early, but it doesn;t seem to matter anymore, just gets worse. If I can fall asleep, I am ok, everything settles down, except, now the heart. I know anti acid pills dont really help hiatal hernia, but am going to try tagamint. Not a fun way to live, The heart thing scares me, then I cant sleep and the stomach gets worse. DANG Meanwhile the lungs get worse and worse, hurts to breathe.

REPLY
unicorn | @unicorn | 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

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I definitely have arrhythmia, I can feel it clearly, but what can they do?? I guess I'll go see cardiologist, so stupid

REPLY
Jo Ann K | @jkiemen | 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

There are drug interactions with Tagamet. That one I would avoid. Look up QT interactions with Tagamet

REPLY
Jo Ann K | @jkiemen | 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

Cardiac Electrophysiologists take care of Arrhythmia issues

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ling123 | @ling123 | Jan 10, 2018
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@jkiemen Interesting thought. My pulmonary doctor at UW hospital Pulmonary Clinic strikes me as having seen a fair number of MAC patients. When I coughed up a large amount of blood three years ago, everybody immediately thought of TB although I had none of the symptoms for TB. Dane County sent a ID nurse to my house to collect my sputum samples right after I got out of ER. Two days later, I had the first appointment with Dr. Ferguson, my pulmonary doctor. He said, "Without seeing the result of your sputum test, I'm already pretty certain you don't have TB. So I'll instruct the county ID lab to also test for MAC". The way he talked to me about it, I got the impression he had encountered many patients with MAC. But he never said anything about Wisconsin being the hotbed for it. Maybe next time when I see him I'll ask him.

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