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

@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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Windwalker – yes, I get short of breath. I am on 2 liters of oxygen at night and when I exercise. I do all my exercising at home with weights and bands – all except aerobic. I know the Mac will always be in my system. Using the 7% saline solution in my nebulizer helps me the most to get the mucous up and out so hopefully my bronchiectasis is slowed down and not damaging my lungs as quickly. I was diagnosed with asthma almost 25 years ago and had a lot of flare-ups with that where I was on prednisone a lot which weakens your immune system which might have had something to do with getting the MAC in the first place.

@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 Same here Barbie. 2 liters of oxygen at night and have to use it with aerobic exercise at the gym. Sounds like we are in the same boat.

@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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I’m checking in to say that I am “temporarily cured” of my symptoms! Not coughing up anything and feel well! This is after 2 rounds of antibiotics which killed the resident bacteria. I am well aware that I still have bronchiectasis and am very much at risk for reinfection, but I am enjoying my respite. I know that I am one of the fortunate ones….I had MAC in 2001 with treatment that worked. I’ve had lots of bronchitis and pneumonias over the years, as we traveled a lot and I was exposed to lots of bacteria and viruses. The latest infections started last year and I was diagnosed variously with asthma, chronic bronchitis, and COPD, but it’s just the bronchiectasis and bacterial infections. Keep asking for sputum cultures! I will be 90 in December and have outlasted the MAC. The doctor says that pneumonia will probably do me in eventually, but so far so good. I’ve had a great life! robynmar

@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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@robynmar
That’s great news that you have remained without mac for so long it gives us hope and that’s so important we all stay hopeful!!!

@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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@robynmar Wonderful!!! When we first ‘met’, you were in rough shape. You Go girl!!!

Liked by Carolyn

@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.

Jump to this post

Yes, very similar.

@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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Many thanks, Terri/@windwalker. I did have all baseline tests done, as recommended. After just two doses of Ethambutol, I had vision changes & shooting pains in skull and my new Infectious Disease doc at the University of Kentucky took me OFF of all 3 MAC medications until I see her again in two months! I am so relieved. Several docs (including my ophthalmologist) expressed surprise that I reacted so quickly to Ethambutol. Usually vision changes take 2-3 months of being on this drug. It is certainly confusing to have had so many medical reactions to this darn disease since earlier this summer! Original pulmonologist wanted to do surgery; first ID dr. wanted me on the Big Three for two years; Rochester Mayo dr. said 14 months on Big Three & now my new ID dr. is consulting with colleagues about taking a “wait and see” approach. At the least, I figure we’ll develop some sort of plan to monitor my health & the progression (or remission) of MAC.

@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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Terri @windwalker, sending you support and hugs during this challenging time for you. It makes sense that the current lung infection would make shortness of breath more likely. Keep a positive attitude, as best you can. I agree about the gym. I go to an all women’s one that I love. Be better soon!

@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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Cid120,..wow! You certainly have been diligent and thorough trying to find best route for treating the enemy !!
Have you considered trying even yet another opinion ….albeit also top notch…National Jewish Health in Denver ?
Tdrell

Liked by 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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@tdrell, I will certainly consider going to Denver to National Jewish Health. I know samples from my bronchoscopy late last May were sent there. I have heard it is one of the best. I need to re-read some past notes. You have gotten good care there?

Liked by tdrell

@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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Cid120….I went there in NJH in January 2017 for a second opinion for the MAC that showed up on bronchoscopy which was done locally in city north of Milwaukee Wi. I had had a cough daily 5pm to 9pm for 2 years. My pulmonologist sent me to infectious Disease Dr who would have immediately put me on the big 3….I told her “No…..I am getting a second opinion” at National Jewish.
The outcome of the 7 day visit over 2 weeks at NJH in Denver revealed
-no reason to treat MAC which had not caused lung infection based on CAT scan and sputum specimens done at NJH.
-indeed I was silently aspirating the MAC from my stomach due to my GERD. Hence found on bronchoscopy….our water in SE Wisconsin has NTM in it!
Dr Huitt gave me Gerd guidelines
– I was also tested to confirm my 30 year Asthma….a Methocholine Challenge test…I do not have asthma.
-also had sleep study overnite there…now on CPAP.
I am on Medicare with a supplement.
I had no bills from my time at NJH.
Tdrell

@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, I will print this and share with my new ID Dr who is considering a “wait and see” approach. Many thanks!!

@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 Hi Carolyn. My gosh, I have never seen so many conflicting opinions in all of my life! It is enough to make your head spin. The Big 3 does have positive effects for some people. They are harsh medications; I guess it would have to be to deal with the tough bacteria that we have. My doctor ‘has the wait and see approach’ also. I am just praying that the new inhaleables come out next year and give us better options. Please keep us posted.

Liked by tdrell, Carolyn

@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.

Jump to this post

@cld120 Thank you, Carolyn. It’s been six days since I last checked in here; I am actually feeling a lot better. The shortness of breath is improving also. Yay!!

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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Terri @windwalker , I am 59 years old & thought I was on my way to 14 months on the Big Three UNTIL we added Ethambutol to the Zithromax & Rifampin mix. After just two doses, stabbing skull pains, wavy/unfocused visual disturbances convinced me otherwise. Docs were shocked at my quick, dramatic reaction. Off all MAC meds for at least two months. May not go back on them in spite of a MAC colony in one lung. Sure not gonna risk my vision!

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