Medication for reocurring lung infections

Posted by lmh7 @lmh7, Dec 27, 2022

I was diagnosed with MAC in 2017, was on the 3 common MAC medications for the first 3 years and was doing fine until recently. I have had 3 lung infections since August and each time was given a non-macrolide antibiotic which cured them. Is anyone on a permanent antibiotic to ward off common lung infections?

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@lmh7 Which specific lung infections have you had recently?
Are you doing daily airway clearance? It seems to be the most effective way to keep our lungs clear.
Sue

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@sueinmn The local clinic that I go to does not do sputum sample tests. I did send a sputum sample to Mayo Clinic in Rochester (I see pulmonologist Dr. Clain there once a year) and it came back 7 weeks later as only showing MAC. I'm not sure if it was checked for only MAC or for all possible infections. That is something I will ask Dr. Clain when I see him in January.
Yes, I do daily airway clearance.

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Hi lmh7!
I have Bronchiectasis and MAC.
Been on Big 3 for 6 months. Recently started higher fevers, more coughing, and a few occurrences of spitting up blood. Pulmonologist said most probably exacerbation of Bronchiectasis and put me on 2 weeks of Augmentin. This has indeed helped. Still waiting on cultures to come back.
May want to ask your doc.
Happy New Year !
Dee

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@lmh7

@sueinmn The local clinic that I go to does not do sputum sample tests. I did send a sputum sample to Mayo Clinic in Rochester (I see pulmonologist Dr. Clain there once a year) and it came back 7 weeks later as only showing MAC. I'm not sure if it was checked for only MAC or for all possible infections. That is something I will ask Dr. Clain when I see him in January.
Yes, I do daily airway clearance.

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To go back to your initial question, a few people on this group have taken very-long-term antibiotic therapy because their infections never seemed to be controlled. Maybe some like Terri @windwalker can explain.

If repeated antibiotic treatment over 4-5 months has been needed, it suggests that the drugs are not curing your infection, just knocking it down temporarily. The danger with this cycle is that the germs will just become more and more resistant to the short term drugs being used.

In general, though, if your infection is MAC flaring up, you may need to go back on the Big 3 and possibly something supplemental like Arikayce…this is something to discuss with Dr McClain at Mayo, unless your local doc is skilled in treating MAC. Your test results on the Mayo Patient Portal should show what was tested.

Here is a technique that has worked for some of us to help keep infections (and for some of us, even MAC, under control) – an "amped up" version of airway clearance, using Mucinex, NAC or glutathione to help thin the mucus, combined with 7% saline nebs to help clear out the airways. There is some evidence that the 7% saline also helps suppress the growth of MAC. Then airway clearance. At first I nebbed twice a day, then after months of little mucus, my pulmonologist suggested once was okay, just increase at the first sign of problems. I have now been antibiotic-free for 3 years!

And I made it "almost" all the way through 2023 without an exacerbation – got a respiratory virus recently that kicked off my dreaded cough, so I doubled down on my nebs & airway clearance for a few days. At first the mucus I was bringing up from way deep was dark yellow and very thick, but yesterday it converted to clear & much thinner, and my cough has receded from painful & frequent to just annoying. I follow my first neb with a vigorous walk in the cold that brings up even more stuff. Yoga poses also work when I won't go outside.

What is your airway clearance routine like?
Sue

REPLY
@sueinmn

To go back to your initial question, a few people on this group have taken very-long-term antibiotic therapy because their infections never seemed to be controlled. Maybe some like Terri @windwalker can explain.

If repeated antibiotic treatment over 4-5 months has been needed, it suggests that the drugs are not curing your infection, just knocking it down temporarily. The danger with this cycle is that the germs will just become more and more resistant to the short term drugs being used.

In general, though, if your infection is MAC flaring up, you may need to go back on the Big 3 and possibly something supplemental like Arikayce…this is something to discuss with Dr McClain at Mayo, unless your local doc is skilled in treating MAC. Your test results on the Mayo Patient Portal should show what was tested.

Here is a technique that has worked for some of us to help keep infections (and for some of us, even MAC, under control) – an "amped up" version of airway clearance, using Mucinex, NAC or glutathione to help thin the mucus, combined with 7% saline nebs to help clear out the airways. There is some evidence that the 7% saline also helps suppress the growth of MAC. Then airway clearance. At first I nebbed twice a day, then after months of little mucus, my pulmonologist suggested once was okay, just increase at the first sign of problems. I have now been antibiotic-free for 3 years!

And I made it "almost" all the way through 2023 without an exacerbation – got a respiratory virus recently that kicked off my dreaded cough, so I doubled down on my nebs & airway clearance for a few days. At first the mucus I was bringing up from way deep was dark yellow and very thick, but yesterday it converted to clear & much thinner, and my cough has receded from painful & frequent to just annoying. I follow my first neb with a vigorous walk in the cold that brings up even more stuff. Yoga poses also work when I won't go outside.

What is your airway clearance routine like?
Sue

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Thank you for your reply! I, too, am suspicious that the short-term antibiotics are only knocking down the infections temporarily. I neb twice daily with Albuterol and 7% saline. I supplement with NAC and vitamins. I also used Mucinex during the exacerbations, during which my sputum was very thick and green/yellow. I went 4 years since being diagnosed with MAC with absolutely no cough at all, to now since August have an infrequent/tickle cough. Yes, the cold weather certainly helps to get more up!

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@lmh7

Thank you for your reply! I, too, am suspicious that the short-term antibiotics are only knocking down the infections temporarily. I neb twice daily with Albuterol and 7% saline. I supplement with NAC and vitamins. I also used Mucinex during the exacerbations, during which my sputum was very thick and green/yellow. I went 4 years since being diagnosed with MAC with absolutely no cough at all, to now since August have an infrequent/tickle cough. Yes, the cold weather certainly helps to get more up!

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I don't know how sputum testing works exactly. I had assumed the samples I provided tested for anything I might have but apparently not. I know they take a very long time to process when they are testing for MAC. At one point I asked my pulmonologist if I could possibly have Pseudomonas and he only then ordered a specific test for that. Turns out I do have it with a chronic form and may have had it for a long time. Either that or I developed it after being put on Augmentin for 4 weeks. I asked him why he had not tested for it before and he said because it is rather rare. Anyway, it is good to ask questions about your sputum tests etc.

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@irenea8

I don't know how sputum testing works exactly. I had assumed the samples I provided tested for anything I might have but apparently not. I know they take a very long time to process when they are testing for MAC. At one point I asked my pulmonologist if I could possibly have Pseudomonas and he only then ordered a specific test for that. Turns out I do have it with a chronic form and may have had it for a long time. Either that or I developed it after being put on Augmentin for 4 weeks. I asked him why he had not tested for it before and he said because it is rather rare. Anyway, it is good to ask questions about your sputum tests etc.

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I ask. Dr didnt tell me about Klebseilla. I was terrified. I asked..Was told its just there causing no harm! Til it makes you sick Pseudoamonia (sp) same! He finally treated Pseudo, but it took him 3 months. After that mess with him, I went toNJH again..I know whats wrong and what isn't now. I also got a new Pulmonary. But, I ask about every test I have done… It may be rare,but my doctor says it has a habit
of returning. So ask about everything!

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@irenea8

I don't know how sputum testing works exactly. I had assumed the samples I provided tested for anything I might have but apparently not. I know they take a very long time to process when they are testing for MAC. At one point I asked my pulmonologist if I could possibly have Pseudomonas and he only then ordered a specific test for that. Turns out I do have it with a chronic form and may have had it for a long time. Either that or I developed it after being put on Augmentin for 4 weeks. I asked him why he had not tested for it before and he said because it is rather rare. Anyway, it is good to ask questions about your sputum tests etc.

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Interesting irenea8. I'm surprised your doctor did not do basic sputum testing to see what you might have. I had a bronchoscopy 5 years ago because of months of dry coughing and it revealed MAC and pseudomonas. The pseudomonas has continued to be positive except for a few months along the way. I was initially offered the option to suppress it or eradicate it. I said I wanted to eradicate it. They put in a PICC line and three times a day my husband helped me do 30 minute IV application for weeks. We were so happy to have gone through that to rid my lungs of that bacteria. It did not turn out the way we hoped–I still test positive. So now I continue with inhaled Levalbuterol, inhaled Tobramycin twice a day nebbing with 3.5% HyperSal. At this point it appears that this is my life going forward. Just so glad I've got a good support system in my husband. No other family around. The very best to you.

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@fdixon63

Interesting irenea8. I'm surprised your doctor did not do basic sputum testing to see what you might have. I had a bronchoscopy 5 years ago because of months of dry coughing and it revealed MAC and pseudomonas. The pseudomonas has continued to be positive except for a few months along the way. I was initially offered the option to suppress it or eradicate it. I said I wanted to eradicate it. They put in a PICC line and three times a day my husband helped me do 30 minute IV application for weeks. We were so happy to have gone through that to rid my lungs of that bacteria. It did not turn out the way we hoped–I still test positive. So now I continue with inhaled Levalbuterol, inhaled Tobramycin twice a day nebbing with 3.5% HyperSal. At this point it appears that this is my life going forward. Just so glad I've got a good support system in my husband. No other family around. The very best to you.

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Initially he did do some basic testing but said nothing specific was found. But he felt it was anaerobic so prescribed the Augmentin which i took for 4 weeks and it worked. Some time later i took the Augmentin again for 2 weeks during an exacerbation but that time it did not work. That is when i suggested the Pseudomonas to him and the sputum test cup and procedure was different from the initial basic testing. We had to drive it up the same day on ice and it was just one sample as opposed to three that were mailed. I have had it done twice now and both times it comes back with chronic form of Pseudomonas (mucoid strain) which means i will never be rid of it and can only knock it back. I could not tolerate the Tobramycin unfortunately. I rely on Saline and some other "natural things". What do you find the Levalbuterol does exactly? Does it make the sputum easier to expel or does it simply allow you not to react to the saline? Does it give you any heart symptoms? My heart is very reactive at this point.

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@irenea8

Initially he did do some basic testing but said nothing specific was found. But he felt it was anaerobic so prescribed the Augmentin which i took for 4 weeks and it worked. Some time later i took the Augmentin again for 2 weeks during an exacerbation but that time it did not work. That is when i suggested the Pseudomonas to him and the sputum test cup and procedure was different from the initial basic testing. We had to drive it up the same day on ice and it was just one sample as opposed to three that were mailed. I have had it done twice now and both times it comes back with chronic form of Pseudomonas (mucoid strain) which means i will never be rid of it and can only knock it back. I could not tolerate the Tobramycin unfortunately. I rely on Saline and some other "natural things". What do you find the Levalbuterol does exactly? Does it make the sputum easier to expel or does it simply allow you not to react to the saline? Does it give you any heart symptoms? My heart is very reactive at this point.

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Hi Irene,
Levalbuterol is a short-acting bronchodilator that relaxes muscles in the airways and increases air flow to the lungs. As I understand it, it opens the airways up so you get the full benefit of the medication, etc. My sputum results have always been pseudomonas aerugonosa–never mucoid strain. The word chronic has never been used but it might as well be as it never goes away completely. The Levalbuterol (two puffs) does not effect my heart but once in the hospital they gave me Albuterol that made me very jittery. I've never taken it on my own.

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