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

@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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Hello – this is Pamela in Boston. I finished up the Big 3 on May 1st after 18 months. I have bronchiectasis, MAC and pseudemonas. I was coughing constantly but about 3 months into taking the meds, my coughing stopped entirely. I had one bad case of pneumonia in March while taking the meds and that was due to being around my sick grandchildren who had really bad coughs. Then this July, when they visited again, they also gave me a very bad case of pneumonia…so word to the wise: even though the Big 3 can really remove the cough, we still have to be very careful around anyone who is sick. The 2 pneumonias I have had this year have in fact reduced by lung capacity and I am more breathless since getting the last pneumonia. Whether I will regain some lung capacity is an unknown. I had no serious side affects while on the Big 3 for 18 months, other than being tired, loss of appetite and weight loss. It’s now been 5 months since I stopped the Big 3 ( for the 2 pneumonias I got, I was put on Levaquin and it cleared up within a week). I am not coughing at all and feel pretty strong overall, except for the shortness of breath when I exert myself. For me, the Big 3 did really help but I also know that once we are diagnosed with MAC and pseudemonas, they never go away – they just linger and we have to be so careful. Best of luck to all of you who are now taking the Big 3 and I hope they will help you the way they helped me. Pamela

Liked by tdrell, Carolyn

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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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Pamela
How was Pseudonomas found? How do they think you got that? I took big 3 also and off 6 weeks. Hoping for the best for all of us with active and “non active” MAC. I call it “cured”! My Mayo doc says some patients never get it back.

Kay S

Liked by tdrell

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Hello Kay – as to how I got the pseudemonas: I can not say for sure, but this is the sequence: I began the Big 3 in Nov of 2015. My cough however became worse in November and December and I was concerned that it was different from the MAC cough – the mucous was much more and a whitish green… I would cough for a long time to clear my lungs. Finally in mid-December, my doctor ordered a sputum test as she suspected pseudemonas – I had never heard of it and my lung doctor never mentioned it. Test came back positive and I went on Levaquin right away for 10 days, on top of the MAC meds. The Levaquin stopped the coughing within one week – it was amazing. Then by Jan the MAC meds were finally kicking in and I was coughing very little. It is very possible that the pseudemonas came from my hot tub which I had used that fall. I did not get in my hot tub again needless to say and that spring, I had the water tested – it came back positive for pseudemonas but they did not find MAC. The cough with pseudemonas is very different from the MAC cough; much more productive and leaves one coughing a lot when you lie down. I have given my hot tub away. I took the MAC meds for 18 months and except for several bouts of pneumonia, I am not coughing – is the MAC gone?…. I have no idea. Sorry for such a long email and best to you, Pamela

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@pamelasc1

Hello Kay – as to how I got the pseudemonas: I can not say for sure, but this is the sequence: I began the Big 3 in Nov of 2015. My cough however became worse in November and December and I was concerned that it was different from the MAC cough – the mucous was much more and a whitish green… I would cough for a long time to clear my lungs. Finally in mid-December, my doctor ordered a sputum test as she suspected pseudemonas – I had never heard of it and my lung doctor never mentioned it. Test came back positive and I went on Levaquin right away for 10 days, on top of the MAC meds. The Levaquin stopped the coughing within one week – it was amazing. Then by Jan the MAC meds were finally kicking in and I was coughing very little. It is very possible that the pseudemonas came from my hot tub which I had used that fall. I did not get in my hot tub again needless to say and that spring, I had the water tested – it came back positive for pseudemonas but they did not find MAC. The cough with pseudemonas is very different from the MAC cough; much more productive and leaves one coughing a lot when you lie down. I have given my hot tub away. I took the MAC meds for 18 months and except for several bouts of pneumonia, I am not coughing – is the MAC gone?…. I have no idea. Sorry for such a long email and best to you, Pamela

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Pamela
I really appreciate your detailed reply.

Is our MAC gone? Some would say it’s never gone, but my Mayo doctor has patients who are years away from getting it back. I may be too optimistic but I think it depends on several factors like the health of a person’s immune system, what kind of MAC you had and where it was in your lung you had it ( some of that’s arm chair doctor stuff).

I am only 6 weeks off my meds, and am finally pretty much over my screwy stomach- my gut bacteria is on the mend.

I’m saying the MACs gone, not welcome back. Hoping for the best for all of us on this journey together.

Kay S

Liked by tdrell

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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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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

Liked by tdrell

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@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?!

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

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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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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..

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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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@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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@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.

Liked by Jen_b

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