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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.

Jen_b | @jenblalock | Aug 29, 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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Oh gosh, Terri. That sounds like my last bout. So glad the antibiotics are working for you. Hope you get to feeling better quickly! You are still on treatment, right?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 29, 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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@jenblalock Yes, still on treatment. Have three more weeks of tobramycin. Will continue netti for nasal pasages and saline inhalation twice a day.

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Jen_b | @jenblalock | Aug 29, 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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@windwalker Is Tobramycin like Amikacin? Inhaled?

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Mariposa | @mariposa | Aug 29, 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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All the best to you Terri, get well fast !!
PS: No more vacuum cleaner for you ..try another sport 🙂
Andree

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tdrell | @tdrell | Aug 29, 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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Windwalker...what a friend you were!!! Wasn't this about the time you fell on steps and injured foot and whole body??tdrell

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Jennifer | @megan123 | Aug 29, 2017
In reply to @windwalker "@megan123 Ha ha ha. That created a funny mental picture in my head. Something tells me..." + (show)
@windwalker

@megan123 Ha ha ha. That created a funny mental picture in my head. Something tells me that Europeans take more baths than showers. I could be wrong. I do not have an answer for that one. Let us know what you do. Maybe you could suds up your body before turning the shower on, and make it a quick rinse off. I like using the P95 or is it N95 disposable masks. They block 95% particulate matter and has an breathing aerator built into the front of the mask. Can purchase at paint stores for sure, but maybe other hardware stores too. They cost around $7.00 for a two/pack.

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I think your idea is probably better. I've got those masks as well. The idea came up over a bottle of wine......lol

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Carolyn | @cld120 | Aug 29, 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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Deal, @windwalker, Terri! I've wondered if some folks do ok taking the Big Three and just quit checking in on these forums since they're managing well.

I have been on Zithromycin, Rifampin and Ethambutol (briefly) for a few weeks and doing fairly well until adding the last drug. The 2nd time I took Ethambutol (2,000 mg.), I had intermittent shooting pains on the side of my skull, wavy vision occasionally & difficulty focusing on small print. I was told to discontinue taking it & go to an ophthalmologist asap. The eye specialist mentioned he had a patient go blind taking it, yikes!

My Mayo Doc said to restart it gradually & take a maximum of 1,500 mg. So wary of these drugs but encouraged by what others have said about possible "cure" after taking Big Three. I didn't think we could ever expect to be cured?? Maybe in remission for a few months or years?

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barbie46 | @barbie46 | Aug 29, 2017
In reply to @barbie46 "I had a severe asthma attack about two months after I stop taking the Big 3..." + (show)
@barbie46

I had a severe asthma attack about two months after I stop taking the Big 3 antibiotics for MAC. I thought I was going to die. Later I thought I still had the MAC but did a culture and was negative but then after pulmonary testing I was told I had bronchiectasis.

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I was on the Big 3 for a year from Feb. 2013 to Feb. 2014 - no signs of MAC since then but now have bronchiectasis or maybe had that before - not sure. My lung capacity is in the mid 40's.

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Kay Strand | @kaystrand | Aug 29, 2017

I'll be darned Terri if I can find where you said we all need to make a deal if we are cured to come back and let the forum know we are staying well. So I'll
post here.
I am 28 days off all drugs for MAC - off big 3. It feels great but I still have some stomach stuff as that long on antibiotics screws w our gut bacteria. Aside from that I'm good and trying to be positive about MAC Not returning!! Not welcome! I bathe only, don't go near anything that steams or mists. Mayo said I will get it from inhaling water. So I'm vigilant on that.

Deal- if I decide to take a forum break I'll be back. Either to tell you I'm still 'cured' or to get the help of the wonderful folks on here. We help each other. Knowing some people are doing well is great hope for us.

We do our best. Thanks all and peace.
Kay S

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5 replies
Kay Strand | @kaystrand | Aug 29, 2017
In reply to @barbie46 "I had a severe asthma attack about two months after I stop taking the Big 3..." + (show)
@barbie46

I had a severe asthma attack about two months after I stop taking the Big 3 antibiotics for MAC. I thought I was going to die. Later I thought I still had the MAC but did a culture and was negative but then after pulmonary testing I was told I had bronchiectasis.

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2 years MAC free. That's great.

Did you have cavitary or nodular?

Stay well!!!
Kay S

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