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.

irene5 Irene Estes | @irene5 | Jan 11, 2018
In reply to @grannyred "Hi. I am new to all of this and trying to understand everything. I am waiting..." + (show)
@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

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Yes that is true about the healthy people with that bacteria in them. My ID doctor explained it like this. If your skin were swabbed there would be all kinds of bacteria living on it including staph and strep. That is a far cry from being infected with staph or strep and those resulting symptoms. I am infected with MAC and have MAC disease. That’s the difference.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 11, 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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@unicorn, Christa, not saying that yours is GERD, (acid reflux) but it certainly could be. Acid reflux caused heart palpitations in me. I was put on heart meds as a pre-caution. I got the reflux under control, and am now off the heart meds. Doing fine now. Sometimes the heart gets stressed if it is not getting enough oxygen and works overtime.

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Jo Ann K | @jkiemen | Jan 11, 2018
In reply to @boomerexpert "@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe..." + (show)
@boomerexpert

@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?

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Tell them we need this agent. I also sent a letter to Texas A & M about the substance they worked on with the university of Munich. The one that helps to open Mycoplasma Cell wall so Antibiotic can get in and KILL IT. I got this response. Yes, we continue to collaborate with various groups, including those in Munich to work on interventions for MAI/MAC. This is an ongoing process, but funding has been difficult and time consuming to obtain. We will continue to work on this as funding permits. If you know of additional funding that can support this work, please let me know.

Thank you for your interest in our work.

I hope you all can see this. Who can we press for Funding. the NIH/NHLB institute?? Or does Mayo have a program?

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irene5 Irene Estes | @irene5 | Jan 11, 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 99.9% sure it is from ingestion - e.g. inhalation of those bugs. I am the queen of vacuuming and am sure I have sucked in more than my share of “dust.”

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irene5 Irene Estes | @irene5 | Jan 11, 2018
In reply to @grannyred "Hi. I am new to all of this and trying to understand everything. I am waiting..." + (show)
@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

You are never alone! And that is very comforting!

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irene5 Irene Estes | @irene5 | Jan 11, 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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It is through ingestion/inhalation - but the crux is that it needs a susceptible host which is where we all come in. TB is not dependent on a “susceptible” host. That is the difference between contagious and not. We all have that commonality.

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lindam272 | @lindam272 | Jan 11, 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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@ling123 - Mycobacteria avium complex - with avium being the key word - airborne. It's the mist from the shower, misters, water sprinkers, and the dirt in the air. Potting soil is a huge incubator of MAC and I wouldn't be surprised if that was my delivery into my lungs. I love working outside and potting plants. Now I wear a mask to do any kind of yard work or potting that works up the soil. Of course, living in AZ doesn't help from that stand point but it beats Upstate NY. Linda

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 11, 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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@pkayh Hi. To the best of my knowledge, mac germs are everywhere, but are more concentrated (higher colony count) in different places. For example, they usually colonize in warm pipes and resevoirs. i.e. your hot water tank, water in the ice-maker tank and old water filters. There is a link on this site 'How to Avoid reinfection.

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Jo Ann K | @jkiemen | Jan 11, 2018
In reply to @jkiemen "Nov 27 17 AIT Therapeutics, Inc. announced that preliminary results from its NO-NTM Phase 2 study..." + (show)
@jkiemen

Nov 27 17
AIT Therapeutics, Inc. announced that preliminary results from its NO-NTM Phase 2 study in Nontuberculous Mycobacteria (NTM) targeting patients suffering from Mycobacterium Abscessus Complex (MABSC) indicate that the primary endpoint of safety was met, with no NO-related serious adverse events (SAEs) observed. The safety data, along with positive results in other key parameters, drive AIT’s decision to move the program forward and plan for a potential pivotal trial to begin in the United States in the second half of 2018. All patients in the trial were refractory to the standard-of-care for MABSC and had underlying cystic fibrosis. Patients were treated with inhaled NO in addition to background antibiotic therapy at the physicians’ discretion. NO was delivered at a concentration of 160ppm for 30 minutes intermittently for 21 days (5 times per day for 14 days and then 3 times per day for a subsequent 7 days), after which no further NO treatments were provided. As per the protocol, all patients will be followed for 81 days. Nine patients were enrolled in the study and all have completed the 21-day dosing schedule. Data presented below are through Day 51 (30 days post completion of treatment) for the endpoints of 6-minute walk (6MW) and forced expiratory volume (FEV1). The primary endpoint of safety, as well as the endpoints of mycobacterium abscessus (M. abscessus) load in sputum and quality-of-life (QoL), assessed at Day 21. The Company anticipates having all data collected by the end of the first quarter of 2018. The Company plans to continue developing its inhaled NO therapy for this indication and expects to begin enrollment in a potential pivotal study in the U.S. in the second half of 2018. With the proprietary NO generator technology, the Company believes it has the ability to deliver inhaled NO to the patient at home, beyond the 21-day treatment period used in the current trial. https://www.bloomberg.com/research/stocks/private/snapshot.asp?privcapId=266763185

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Yes and they would have even more sticky stuff in their lungs than we do.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 11, 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

@ling123, I think that disturbed soil increases your odds of inhaling it because people have been known to get MAC from potting soil. There are billions of MAC in one teaspoon of peat. I also learned that pseudomonas can be caught by just touching plants. Wash hands everybody!

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