How To Prevent Re-Infection of MAC/MAI

Terri Martin., Volunteer Mentor
@windwalker

Posts: 3476 Joined: Nov 18, 2016

How To Prevent Re-Infection of MAC/MAI

Posted by Terri Martin., Volunteer Mentor @windwalker, Aug 24, 2017

How To Prevent Re-Infection

Causes in the home can be curtailed to some extent. Turn your hot water heater temperature up to 130 degrees (use caution with children in the house as this is a scalding temperature).Take a bath instead of a shower. The splashes and steam from the shower get inhaled. Remember your hot water tank and the shower head are the biggest offenders for harboring mac and/or other dangerous mycobacteriums. Your shower head should be soaked in vinegar every 6 months or less. It can be removed (ideally) and soaked, or a baggie with vinegar in it wire-tied over the shower head while still in place. It should be left soaking for at least thirty minutes.

Change water filters every two months or boil your drinking water. Do not use ice cubes that your freezer makes or drink the water from the door. That water sits in a bladder inside your refrigerator next to warming elements and breeds mac.

Avoid swimming pools, steam rooms, and hot tubs, and facials using steam. (I know, I just sucked all of the joy out of your life – I‘m sorry.) Avoid unnecessary visits to people in the hospital or nursing homes. These two places tend to harbor some of the very bad infectious bacterias like: m. abscessus, serratia marcescens, and most notoriously klebsiella pneumonia. These last three are particularly bad because they are hard to treat and are famous for being antibiotic resistant. There are new drugs on the horizon that seem to be promising for combating these, but have not been released by the FDA yet.

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Colleen Young, Connect Director
@colleenyoung

Posts: 7054 Joined: Jul 23, 2014

Posted by Colleen Young, Connect Director @colleenyoung, Sep 28, 2017

Terri,
Thanks for listing the prevention precautions people with MAC can take. It helps to at least take back some control. Here are links to further discussion on Connect where members talk about some of these topics.

– Bacteria and water filter https://connect.mayoclinic.org/discussion/bacteria-and-water-filter/
– Swimming in chlorinated swimming pools https://connect.mayoclinic.org/discussion/swimming-in-chlorinated-swimming-pools/
– Water Sample Testing https://connect.mayoclinic.org/discussion/water-sample-testing/
– Aerobika/nebulizer cleaning question https://connect.mayoclinic.org/discussion/cleaning-question/

Also see the partner discussion called:
– Possible causes of MAC/MAI Re-Infections https://connect.mayoclinic.org/discussion/possible-causes-of-macmai-re-infections/

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Jo Ann K
@jkiemen

Posts: 419 Joined: Jun 23, 2017

Posted by Jo Ann K @jkiemen, Jan 10, 2018

Do you think Mayo will become part of any clinical trials for MAC in the future?

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Colleen Young, Connect Director
@colleenyoung

Posts: 7054 Joined: Jul 23, 2014

Posted by Colleen Young, Connect Director @colleenyoung, Jan 10, 2018
In reply to @jkiemen "Do you think Mayo will become part of any clinical trials for..." + (show)

Hi Jo Ann,
Mayo Clinic has and continues to conduct clinical trials related to MAC and NTM. You can search our clinical trials database to see current trials: http://www.mayo.edu/research/clinical-trials
Using the keywords mycobacterium avium complex and Nontuberculous, I found these 3 trials:
– An Extension Study Assessing the Long-Term Safety, Tolerability, and Effectiveness of Liposomal Amikacin Inhalant in Patients with Non-Tuberculous Mycobacterial Lung Infections, Who Participated in Study INS-212
http://www.mayo.edu/research/clinical-trials/cls-20266935
– Study to Evaluate Efficacy of LAI When Added to Multi-drug Regimen Compared to Multi-drug Regimen Alone
http://www.mayo.edu/research/clinical-trials/cls-20147219
– A Study of Clofazimine for Treating Patients with Drug Resistant Non-Tuberculous Mycobacterial Infections
http://www.mayo.edu/research/clinical-trials/cls-20268654

To get an idea of past research conducted by Mayo Clinic, I looked at Dr. Aksamit’s and his team’s publications on PubMed: https://www.ncbi.nlm.nih.gov/pubmed?cmd=PureSearch&term=%28aksamit%20tr%5BAuthor%5D%20AND%20mayo%5BAll%20Fields%5D%29

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Jen_b
@jenblalock

Posts: 174 Joined: Jan 02, 2017

Posted by Jen_b @jenblalock, Jan 14, 2018

What about hot water temp? I’ve read above 130 F and also 140 F. My husband thought ours was definitely hot enough. I just got a new instant read thermometer and it is only at 123 F. Thanks!

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Terri Martin., Volunteer Mentor
@windwalker

Posts: 3476 Joined: Nov 18, 2016

Posted by Terri Martin., Volunteer Mentor @windwalker, Aug 15, 2018

@mobmcb Do you see the previous text above this reply post?

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mobmcb
@mobmcb

Posts: 5 Joined: Aug 15, 2018

Posted by mobmcb @mobmcb, Aug 16, 2018
In reply to @windwalker "@mobmcb Do you see the previous text above this reply post?" + (show)

Yes mam I do I am poking around like you suggested reading some very interested information. I appreciate you helping me I am sure I will have more question of you don't mind

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Terri Martin., Volunteer Mentor
@windwalker

Posts: 3476 Joined: Nov 18, 2016

Posted by Terri Martin., Volunteer Mentor @windwalker, Aug 17, 2018
In reply to @windwalker "@mobmcb Do you see the previous text above this reply post?" + (show)

@mobmcb Feel free to ask questions, that is what I am here for. I am glad that you are navigating around the site and learning. The info will help you to advocate for your husband. FYI, there is also a 'Caregivers' group here on Connect. A very kind man, named Scott, heads that group. It takes a lot to care for a seriously ill spouse. Have you seen that group?

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mobmcb
@mobmcb

Posts: 5 Joined: Aug 15, 2018

Posted by mobmcb @mobmcb, Aug 17, 2018
In reply to @windwalker "@mobmcb Do you see the previous text above this reply post?" + (show)

I have not seen the group..approx what does it cost to go to mayo for evaluation

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mobmcb
@mobmcb

Posts: 5 Joined: Aug 15, 2018

Posted by mobmcb @mobmcb, Aug 17, 2018
In reply to @windwalker "@mobmcb Do you see the previous text above this reply post?" + (show)

What is the life expectancy of someone who's one lung is already useless and it doesn't seem that after 4yrs that he's getting any better but worse

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Terri Martin., Volunteer Mentor
@windwalker

Posts: 3476 Joined: Nov 18, 2016

Posted by Terri Martin., Volunteer Mentor @windwalker, Aug 20, 2018
In reply to @windwalker "@mobmcb Do you see the previous text above this reply post?" + (show)

@mobmcb Hello. I have heard several people mention that if you do not have an insurance company that Mayo takes or are on Disability, the cost is $5000.00 plus. You will have to call Mayo and discuss that.

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