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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.
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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
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4 Reactions@tdrell, I will print this and share with my new ID Dr who is considering a "wait and see" approach. Many thanks!!
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2 Reactions@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.
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2 Reactions@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!!
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2 ReactionsTerri @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!
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
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2 ReactionsPamela
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
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1 ReactionHello 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
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
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1 ReactionHi! 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.