(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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

@jkiemen….I use OTC Zantac….150mg for my GERD first thing in morning and at night sometimes. I use TUms and Gaviscon chewable for break Thru indigestion as needed. But I also am monitored by my Cardiologist once or twice a year to be sure the chest pain is not cardiac since I had a cclised coronary artery 3 years ago….my symptom for that was extreme fatigue. Tdrell

@jkiemen

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.

Jump to this post

excellent suggestion to see an MD about wearing a heart monitor to check on palpitations.
Pat

Liked by tdrell, chinasmom

@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe it was more so than stated here, either result leads to the clear indication of how much more research is needed…NJH is very disappointing with their focus on everything but MAC/NTM’s…Do you have contact info for this Dr. Daly so we can contact him en masse?

Liked by heathert, chinasmom

@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

thank you, It’s ok I don’t take any other drugs

Liked by chinasmom

@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

Yes I do it all, doesn’t matter anymore

Liked by chinasmom

@jkiemen

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.

Jump to this post

We must all lobby the CDC and NJ

Liked by chinasmom, Margie E

@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

@unicorn progress is being made on the tricky process of making an antibiotic inhalable (make it small enough to enter the lung without difficulty)…the only thing that will speed things up is to keep on the CDC and Nat’l Jewish to fund/conduct trials for the effective treatments that we know now exist but aren’t being funded or given priority…hey, everyone, we have 2/12 years…

@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 not the air…if that were the case it would be TB…water and soil.

@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

@unicorn Yes! I believe that others have mentioned that symptom as well. Of course, you will need to alert your doctor. It is so comforting to know that you are not alone nor crazy! Wishing you better days.

@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

 I suggest that you check all the secondary effects of medication you take or have taken. Get a doctor check up for your heart with a cardiologist to define what is wrong with your heart exactly.  All medication is hard for the liver.   If you have taken antibiotic

for 3 years your liver probably needs help. If you have a congested  liver that is also hard on your heart. It all work together.   I had arrhythmia since the age of 28  so do not panic with palpitation (heart racing) and then the doctor give me a pill to

control the rhythm and it wouldn’t work so I stop it. I am still alive after almost 40 years after. The Dr says 60% of the population live with some kind of arrhythmia.  It is important to get the diagnosis.  My husband has fibrillation but he uses the same

as me  Q10. (Antioxidant). Natural heart control rhythm recommended by my health Dr.(was a cardiologist before becoming a doctor with a more natural approach)  Q10  seem to do the trick we have normal rhythm.  I have some if I don’t use my Q10 for a while.

 It is unbelievable how those antibiotic causes damage to your body.  I am glad I never took it and maybe if a person doesn’t have bad effect from the bronchiectasis and the Mac a person should stay that way.  I have none of those effect  because I use natural

remedy. No problem breathing, no fatigue,  I got rid of the MAC also using my natural approach. so do we really need strong antibiotic??

@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

@unicorn, if you are having chest pain, you really should get it looked into. I know having all of this really sucks and the last thing we need is one more health problem. Be sure you protect yourself by wearing a mask and gloves to any outing and especially at medical facilities. You will get asked why So you just tell them you can’t afford to get sick. By wearing a mask you won’t be affected by the overly saturated perfume on people around you. I use mine to keep cold air out of my lungs when I have to go outside. I also have one on at the gas station to keep gas fumes and exhaust fumes from entering my lungs and gloves on so i avoid germs on pump handles and door handles and any buttons on the gas pump. I think I get asked why I’m wearing my protection more from my doctors than from the General public. I’ve even had them tell me its not necessary, but I just go on doing my thing. So, Heres hoping we all have a healthier 2018! Take good care of you and come back with the good news of a healthy heart!
Becky

Liked by tdrell

@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

It is my understanding that MAC can not be “gotten rid of.” It can be stopped from continuing to colonize. When that happens you are considered “stable.” I am a fan of Q10, vitamin B, D, C, thistle for my liver and several others. Unfortunately, for all my vitamin expenditures I still ended up with MAC!

@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

What is it someone said once? Maybe it was Katherine. I can’t remember. We wear a mask to protect ourselves from other people’s germs/illnesses. And it’s ok to tell people that. Most are very understanding.

Liked by tdrell, chinasmom

I have also found this. We need to talk to the MAC group at Harvard and University of Texas. Please take time to read this. https://www.sciencedaily.com/releases/2017/12/171228100908.htm

Liked by heathert, chinasmom, 1478

@grannyred

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

Jump to this post

Hi @grannyred, Welcome to the group. I completely agree with you that knowledge is power and sometimes scary, an unfortunate paradox. The great part about this group is the collective knowledge and experience, the sum of which is even greater than its parts. Glad you found us, especially during this waiting period. When do you expect to get results from the new sputum test? Have you done sputum tests before?
We look forward to getting to know you.

Liked by tdrell

Please login or register to post a reply.