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Possible causes of MAC/MAI Re-Infections

Posted by @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.

REPLY

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.

@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 Jen, these mycobacteriums are never fully eradicated. Every human and animal has it in their lungs. It is unavoidable because it is everywhere. Most people and animals can keep the colonies in check with their immune systems, and also because they have healthy lungs. Those of us with bronchiecstasis have lungs that are structurally abnormal and are prone to trapping these bacterias so that they colonize. The key is to take good care of yourself. Don’t put yourself in situations that may bring on illness. (like I did 2 weeks ago) I was cleared on my last test in June, and feeling pretty good, so I volunteered to help a friend move. Big mistake. I caught an infection (probably not mac) by vacuuming her house and stairway. Her house was FILTHY because she has severe lupus and no energy to clean. The carpet was covered in everything including fur and dander from three dogs. I was choking the whole time and held a shirt over my nose, but still, it was stupid on my part. I won’t do that again. Avoid sick people, exercise, do daily saline treatments. Those are only the three ‘biggies’, there are other steps as well that you can take. I am SO glad to hear that you are clear of an active infection! It takes work to keep it that way.

Liked by tdrell, Carolyn

@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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Good explanation. That makes sense. Ugh! So sorry you caught something. I caught pneumonia 3 weeks after I got off meds. Was not happy. Have been okay so far after that except for once on our road trip but luckily had some Levaquin with me just in case and it cleared up before it turned into anything nasty. I’ve been off meds only 4 months so won’t be counting my chickens yet. I know what you mean about being careful. It’s so easy to just forget about it and say “Oh, I’ll be fine” until you’re not. Got off of the lung clearance for awhile due to traveling and laziness but now am back home and back on a good regimen of that and exercise. Best to you and I sure hope you kick that bug quickly!

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.

@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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My doc at Mayo says there’s a 40% chance of re infection. Yes we have to be careful. Perhaps the 60% who do get cured, are not on any forum, any longer. We hear from people who have new NTMs or MAC being treated. Let’s hope there’s many folks out there that used to have it but are too busy to write in they are well. It’s good to hope! My doc has many patients who did not get it back.
Careful and hopeful it’s gone!
Kay S

Hi there. I want to thank u for all the hard wrk u have done with our group. U r doing an amazing job for us all. I’d like to know what I can do with the shower issue. Travelling to Ireland for 3 weeks, road trip. If they have no tubs, then I will be forced to use shower. Any ideas on what to do??? I have this crazy idea from a friend. She just bought a full faced snorkel. I would wash my hair in sink. Then tk a quick shower, just warm water, plug tip of breathing mechanism and quick shower. I know it sounds crazy, but this must wouldn’t get to me. Fans on of course, window opened…low but it does make sense

@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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@kaystrand Kay, that is an excellent point that you made! Perhaps you are right; once cured, the people leave the forum……I think we should all commit that if we are ever cured, that we return occasionally and check in to let others know that it can happen. Deal??

@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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@barbie46, Barbie, how long ago did you go off of the BIG 3?

@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.

@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 Thank you for the well wishes Jen. I had developed post nasal drip after my vacuuming a friend’s house. It started to turn green and then infected my lungs. I started to do netti treatments using boiled distilled water with salt. That really helped a lot. The drip has stopped. Plus, the antibiotics are kicking in. Today, I am starting to breathe a bit better also.

@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?

@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.

@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?

@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

@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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