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Possible causes of MAC/MAI Re-Infections

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

Possible Causes of MAC/NTM re-Infection

One cause is that we do not fully get ‘cured’ of these infections; but rather they get beat down to a manageable level by antibiotics. When we get run down or sick, that gives it the opportunity to rear it’s ugly head again and grow colonies that make us very sick.

The second known cause is that we most likely caught this somewhere in our daily routine, whether it be in the home, job, outdoors, or at the gym. Most likely, we caught this in our own homes.

Most of the mycobacteriums that typically infect those with bronchiecstasis and cystic fibrosis form a bio-film. Bio-film is the sticky stuff the bacteria surrounds itself with to shield it from our immune system, antibiotics, and other mycobacteriums. It also uses it to attach itself to plumbing pipes and tubes, sides of swimming pools and hot tubs, inside of water filters, inside of water tanks of your refrigerator (ice-maker & water in the door), tanks inside medical equipment for surgeries, and dental rinsing tools.

Some people get re-infected by environmental means as well. For example a person who works in a nursery/garden center may catch it from the potting soils and misting water. Because they work around that day after day; they build up a bacterial load where the body can no longer defend against it. This is only one example of many on how it can be contracted again from outside sources.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Kay Strand | @kaystrand | Sep 15, 2017

Renee
MAC is a diesease that's different for everyone. Cavitary and nodular differ along with type and location. Side effects to the big 3 differ as well. I didn't feel great but after a full year I was taken off too. We all are impacted physically and emotionally from the disease and the drugs.
I'm not a doc, but I think Sputum cultures, CT scans and patient symptoms is what the docs use to determine if you have it or It comes back.
I've been off meds for 6 weeks, there are after effects like some gut issues I have . There is also the emotional stuff, the anxiety most of us have not knowing what's next.

Here's what I'm trying to do. Just live. Be happy to be off meds and feel pretty good. Trying to get out and do things, eat healthy, exercise and spend quality time with friends and family, donsome service work. We only really have today, I'm 71 and my friends are getting sick, some have died. So, maybe we just need to try to feel the joy of having survived till now and just try to live each day fully, maybe try to do some good with our remaining time. I worry terribly, but I keep pushing through to change my thinking and just live. Sometimes it's easier than others, I'm writing this today but could be the person tomorrow afraid and looking to the forum to pick me up.
Wishing you and all Forum friends a nice Autumn weekend.
Kay S

REPLY
1 reply
reneeplus6 | @reneeplus6 | Sep 15, 2017
In reply to @kaystrand "Renee MAC is a diesease that's different for everyone. Cavitary and nodular differ along with type..." + (show)
@kaystrand

Renee
MAC is a diesease that's different for everyone. Cavitary and nodular differ along with type and location. Side effects to the big 3 differ as well. I didn't feel great but after a full year I was taken off too. We all are impacted physically and emotionally from the disease and the drugs.
I'm not a doc, but I think Sputum cultures, CT scans and patient symptoms is what the docs use to determine if you have it or It comes back.
I've been off meds for 6 weeks, there are after effects like some gut issues I have . There is also the emotional stuff, the anxiety most of us have not knowing what's next.

Here's what I'm trying to do. Just live. Be happy to be off meds and feel pretty good. Trying to get out and do things, eat healthy, exercise and spend quality time with friends and family, donsome service work. We only really have today, I'm 71 and my friends are getting sick, some have died. So, maybe we just need to try to feel the joy of having survived till now and just try to live each day fully, maybe try to do some good with our remaining time. I worry terribly, but I keep pushing through to change my thinking and just live. Sometimes it's easier than others, I'm writing this today but could be the person tomorrow afraid and looking to the forum to pick me up.
Wishing you and all Forum friends a nice Autumn weekend.
Kay S

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Kay, good words! I don't have gut issues (yet) but my acupuncturist has recommended I drink some Kombucha to get some good bacteria back in my system! Something to look into?!

REPLY
tdrell | @tdrell | Sep 15, 2017
In reply to @reneeplus6 "Hi! Wish I'd found this forum when I started my MAC journey a year ago! I've..." + (show)
@reneeplus6

Hi! Wish I'd found this forum when I started my MAC journey a year ago! I've just come off the meds- my Dr kept me at a year because I "developed" such a weird depression while on them- complete apathy. I'm so paranoid about it coming back as I can't do this again (I think my husband would leave too!) I've been off meds now for 3weeks but in the last couple days, feel like a tightness in my chest. How quickly would this bounce back if we didn't really get rid of it? Also is the sputum test a good test- my Dr diagnosed by bronoscopy and never mentioned the sputum test.

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Reneeplus6....did the Dr stop meds after doing sputum culture that were negative??? How about chest CAT scan...any done?? Tdrell

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Terri Martin, Volunteer Mentor | @windwalker | Sep 20, 2017
In reply to @jenblalock "See, now my specialist says the infection itself is 'eradicated' although his PA does not like..." + (show)
@jenblalock

See, now my specialist says the infection itself is 'eradicated' although his PA does not like that term. From what I understood, we can get reinfected with the same or different mycobacterium easily if we have bronchiectasis. I can't seem to find a definitive answer to this on the internet (except one that says the infection is curable but the bronchiectasis is not). I guess maybe 'cured' is a relative term.

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@cld120 Hey Carolyn! What's up with you these days???

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beverly1945 | @beverly1945 | Aug 26, 2018

Hi it sermscalot of people here are on meds dr said I don’t need now but tech ck in 3 mos but if someone asked me to cough once they’ll here the cough otherwise I don’t is that a good reason not to take meds ? He thinks I’m 3 mos maybe when I return it will be gone ! I’ve had it 9 mos hope so I’m so confused and scared he thinks I’ll be fine

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beverly1945 | @beverly1945 | Aug 26, 2018

Question how do you know when the micro bacteria is gone or does it stay in your system

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Jennifer | @megan123 | Aug 27, 2018
In reply to @jenblalock "See, now my specialist says the infection itself is 'eradicated' although his PA does not like..." + (show)
@jenblalock

See, now my specialist says the infection itself is 'eradicated' although his PA does not like that term. From what I understood, we can get reinfected with the same or different mycobacterium easily if we have bronchiectasis. I can't seem to find a definitive answer to this on the internet (except one that says the infection is curable but the bronchiectasis is not). I guess maybe 'cured' is a relative term.

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Hi Terry....thank you for this valuable information...it’s good to post this periodically for patients that are on the big 3, including myself..

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 27, 2018
In reply to @jenblalock "See, now my specialist says the infection itself is 'eradicated' although his PA does not like..." + (show)
@jenblalock

See, now my specialist says the infection itself is 'eradicated' although his PA does not like that term. From what I understood, we can get reinfected with the same or different mycobacterium easily if we have bronchiectasis. I can't seem to find a definitive answer to this on the internet (except one that says the infection is curable but the bronchiectasis is not). I guess maybe 'cured' is a relative term.

Jump to this post

@megan123 Hi Jennifer. Please use @name of the person you are replying to so that your reply connects to that conversation. This reply is floating, therefore I do not know which info you are finding valuable. Thanks!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 27, 2018

@beverly1945 Hi Beverly. You should be tested every six months for MAC by either a sputem test or bronchoscopy. If you have trouble bringing up sputem, they have inhaled saline they can give you to induce coughing and thinning mucous so that it comes up. Otherwise a bronchoscopy is the next choice. The Mayo prefers sputem tests. Once you test negative, it is recommended that you get tested once a year. (I am on year two of annual testing, yay!) All people have a little bit of mac in their lungs. It does not cause illness in most people because they have better immune systems, and/or do not have other lung issues like COPD, and Bronchiectasis. MAC gets treated when it begins to over colonize. That is when it causes illness and sometimes damage to lung tissue. From what I understand, treatment can beat the mac down to an undetectable level; but, because our lungs are diseased with bronchiectasis or other things, we are prone to it coming back. That is why it is important to get checked for it routinely.

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