Possible causes of MAC/MAI Re-Infections

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.

Liked by Jennifer, pfists, Carolyn

@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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@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

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.

Liked by Kay Strand

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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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@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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@kaystrand

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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Taking probiotics has helped my stomach while on the Big 3. I had some loose stool and blood and eyes checked regularly and no problems – no hearing problems either.

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@kaystrand

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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Kay strand…thrilled for you!!! Keep us posted…tdrell

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@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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@mariposa Sport! Ba ha ha!

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@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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@tdrell Yes, Terri. the fall came after the moving. No good deed goes unpunished.

Liked by tdrell

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@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 Carolyn, I honestly don’t know what to think about the Big 3. My Mayo doc says he is against them unless a person is severely infected. Those drugs scare me. I think it may be a good idea for younger people to take them because they have stronger bodies to tolerate them. I opted to not take them back in 2005 because my body is so fragile and always has been. There is a lot documented out there for folks to do their due diligence on whether they think it is worth it. The future trend when the new drugs come out in the next 18 months is mainly using inhaleables. That way, the meds go directly into the lungs and spare going through your entire body. Cure rates are very low. The only institution claiming to be able to ‘convert’ someone is National Jewish Health. And even at that; the circumstances have to be just right.

Liked by Jen_b, Carolyn

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@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, I am not sure about ‘toby’ being like Amikacin. All I know about tobramycin is that it kills pseudomonas infections and this med is typically used for Cystic Fibrosis patients. I asked my Mayo doc if it also kills mac, he said no. I said to him that it was ironic then, because the toby stopped all of my coughing. I had been coughing every day from sun up to sun down for the past 10 years! Explain that! Did I have pseudomonas infection all of that time? Mind you, my past drs never gave me a sputem test, so we will never know…..

Liked by Jen_b

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@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 Wow, then you have gone a long stint without MAC infection, that’s great! And it is encouraging! See this @jenblalock and @cld120? There is hope that this mess clears up. My lung function is at 40% too. Are you having issues with being short of breath? I am lately. I do not know if it is due to this current infection or just me going downhill. I have noticed that I have gotten worse. I haven’t been to the gym in two weeks, mainly because of a recent fall. I swear, going to the gym was keeping me going.

Liked by Carolyn

REPLY
@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.

Jump to this post

@megan123 Wine, yes, I can see how such fancies could arise. Thanks for the giggle!

REPLY
@kaystrand

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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@kaystrand That is wonderful Kay. It would be great if those who got better would come back to the forum from time to time and cheer those on that are going through the treatment of the BIG 3; to tell them what IS possible.

REPLY
@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 Carolyn, here is the list again of how often to keep up with various tests while on the BIG 3. Take care of those eyes! From the File Cabinet:
TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin – CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase – LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE – KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH

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