Hi, I was diagnosed with MAC about 10 years ago and the doctor just started me on the 3 drug cocktail of azithromycin, rifampin and ethambutol every day. I have only been on the drugs about 19 days but the side effects have all but incapacitated me. Does anyone know if the body adjusts to the drugs and how long it takes before the drugs work? My doctors never mentioned any side effects, only said the course of taking the medicine was 9 months to a year. Thank you!
Hi, I was diagnosed with MAC about 10 years ago and the doctor just started me on the 3 drug cocktail of azithromycin, rifampin and ethambutol every day. I have only been on the drugs about 19 days but the side effects have all but incapacitated me. Does anyone know if the body adjusts to the drugs and how long it takes before the drugs work? My doctors never mentioned any side effects, only said the course of taking the medicine was 9 months to a year. Thank you!
Are your doctors MAC experts? The reason I ask is that treatment guidelines state that meds should continue until 12 months post initial sputum conversion, so a year would be the very minimum.
Thank you Don, I am 20 days on the meds now and down almost 6 pounds! I am so nauseous it is hard to eat. I am not a complainer so this is such a new experience. I don't understand what the nebulizing 7% saline is but am trying to find it on the internet. Any information or thoughts on what i should get to try that would be appreciated. i have a call into my doctor now as a neighbor said there are anti-nausea meds? I need something if I'm going to do this for the next year! So thankful I found this site for a better understanding of what is going on! Ina
Ina, sadly, even pulmonologists with many years of pulmo experience are not well informed about treatment and maintenance guidelines for bronchiectasis and MAC. These are both very rare conditions (according to some studies, as rare as 1 in 2,000 people and 1 in 3,300, respectively), so the average community doctor doesn't see a large volume of patients with such 'orphan diseases. I ended having to go to National Jewish and, believe me, it was a real eye opener.
Airway clearance is recommended for management of bronchiectasis by the American Thoracic Society, so I find it bewildering that so many pulmonologists are oblivious to guidelines set by their *own* professional organizations. I had never heard of it until I went to NJH and when I subsequently asked my community pulmonologist for a refill script, he looked at me with puzzlement as though I'd asked him for ride on a unicorn. He had literally never heard of 7% saline nebulization for management of bronch. and I had to explain the concept to HIM! Prior to NJH, I had also gone to Mayo and no one there had mentioned it either.
I recommend that you watch all the NTM videos on the NJH youtube channel. You will come out being orders of magnitude more informed about NTM than your average community pulmonologist, guaranteed. Also, if you can manage a trip up to NJH, I highly recommend it. It's best to go to a national center that deals with thousands of NTM cases per year, than a community pulmonologist who has perhaps seen less than half a dozen cases in his/her entire medical career.
Ina, you said, " I don't understand what the nebulizing 7% saline is but am trying to find it on the internet." I'm not the Internet but here's an Okie's take on why it tends to be favored among MAC sufferers. People who know about such things tell us that although lower concentrations of saline are helpful to the extent that they thin mucous which presumably facilitates coughing it up, However, when the concentration reaches 7% it not only thins, but also becomes lethal to mycobacterium avium complex (MAC) infections. Which is most likely the reason a few years ago after switching to 7% from a lower concentration of saline, my Pulmo (for the first time) following a chest X-ray, told me that the radiologist reported that the MAC infection had diminished in size compared to an earlier X-ray.
This.
Mycobacteria can't survive conditions higher than 3% salinity. That's why sea/ocean water (which is 3% saline) is 'safe' from a re-infection risk perspective. Swimming pools, spas, etc. are high risk due to low salinity of the water.
At NJH, they go from 3% all the way up to 10%. I use 7%, which took some getting used to, but I'm convinced it's what dramatically reduced my colony count from over 200 to 3. 17% of people who neb with saline are able to convert to negative.
This.
Mycobacteria can't survive conditions higher than 3% salinity. That's why sea/ocean water (which is 3% saline) is 'safe' from a re-infection risk perspective. Swimming pools, spas, etc. are high risk due to low salinity of the water.
At NJH, they go from 3% all the way up to 10%. I use 7%, which took some getting used to, but I'm convinced it's what dramatically reduced my colony count from over 200 to 3. 17% of people who neb with saline are able to convert to negative.
The table on page 4 of this article: efaidnbmnnnibpcajpcglclefindmkaj/viewer.html shows a variety of saline levels which eliminate Mycobacteria in culture medium. The most common infectious agents required greater than 5% to eliminate colonies. Those were M. avium, M, intracellulare, M. chimaera and M. abscessus.
Interestingly, TB was eliminated above 3%.
Sue
This.
Mycobacteria can't survive conditions higher than 3% salinity. That's why sea/ocean water (which is 3% saline) is 'safe' from a re-infection risk perspective. Swimming pools, spas, etc. are high risk due to low salinity of the water.
At NJH, they go from 3% all the way up to 10%. I use 7%, which took some getting used to, but I'm convinced it's what dramatically reduced my colony count from over 200 to 3. 17% of people who neb with saline are able to convert to negative.
Ina, I consider antibiotics “cruel and unusual punishment” to force upon oneself; occasionally justifiable but to be avoided if possible. If nebulizing 7% saline won’t do the trick and one must use the microbe assassins I would take measures to offset damage to ones’ Microbiota. A probiotic pill might help. I rely mainly on fermented foods, chiefly kimchi and sauerkraut, some from the refrigerator case at the grocery, but predominantly my own creation.
I enjoy a quiet satisfaction when I realize I have have a “hands on” role in creating my own health supportive foods. Don
Ina, somewhere along the way I read a bit about the pivotal role of our "gut" in our overall health. It reminds me of the old quip "if Mama ain't happy ain't nobody happy." More to the point, I came across something called the "gut brain axis" and the "gut lung axis." Apparently it's to our benefit to keep our gut "microbiota" healthy, as there is some sort of interaction between the gut and the lungs. And somewhere else along the way I came across something suggesting that our gut just relishes fermented food. So, "happy gut, happy lungs." Now I'll wait, full of anxiety, anticipating a post informing me that all this is a bunch of balderdash that has long-since been debunked. Grins, Don
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Twice daily, Ina.
Very informative National Jewish Health presentation by Dr Huitt about managing medication side effects.
Hi Ina,
Are your doctors MAC experts? The reason I ask is that treatment guidelines state that meds should continue until 12 months post initial sputum conversion, so a year would be the very minimum.
Ina, sadly, even pulmonologists with many years of pulmo experience are not well informed about treatment and maintenance guidelines for bronchiectasis and MAC. These are both very rare conditions (according to some studies, as rare as 1 in 2,000 people and 1 in 3,300, respectively), so the average community doctor doesn't see a large volume of patients with such 'orphan diseases. I ended having to go to National Jewish and, believe me, it was a real eye opener.
Airway clearance is recommended for management of bronchiectasis by the American Thoracic Society, so I find it bewildering that so many pulmonologists are oblivious to guidelines set by their *own* professional organizations. I had never heard of it until I went to NJH and when I subsequently asked my community pulmonologist for a refill script, he looked at me with puzzlement as though I'd asked him for ride on a unicorn. He had literally never heard of 7% saline nebulization for management of bronch. and I had to explain the concept to HIM! Prior to NJH, I had also gone to Mayo and no one there had mentioned it either.
I recommend that you watch all the NTM videos on the NJH youtube channel. You will come out being orders of magnitude more informed about NTM than your average community pulmonologist, guaranteed. Also, if you can manage a trip up to NJH, I highly recommend it. It's best to go to a national center that deals with thousands of NTM cases per year, than a community pulmonologist who has perhaps seen less than half a dozen cases in his/her entire medical career.
This.
Mycobacteria can't survive conditions higher than 3% salinity. That's why sea/ocean water (which is 3% saline) is 'safe' from a re-infection risk perspective. Swimming pools, spas, etc. are high risk due to low salinity of the water.
At NJH, they go from 3% all the way up to 10%. I use 7%, which took some getting used to, but I'm convinced it's what dramatically reduced my colony count from over 200 to 3. 17% of people who neb with saline are able to convert to negative.
Very interesting extracare808. Thanks for posting. Don
The table on page 4 of this article: efaidnbmnnnibpcajpcglclefindmkaj/viewer.html shows a variety of saline levels which eliminate Mycobacteria in culture medium. The most common infectious agents required greater than 5% to eliminate colonies. Those were M. avium, M, intracellulare, M. chimaera and M. abscessus.
Interestingly, TB was eliminated above 3%.
Sue
@extracare808 I couldn't open the link that Sue posted. I believe it's https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/. See especially tables 2 and 3. Another good article is https://erj.ersjournals.com/content/54/1/1802143.long
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1 ReactionHow do fermented foods help MAC, bronchiectasis?
Ina, somewhere along the way I read a bit about the pivotal role of our "gut" in our overall health. It reminds me of the old quip "if Mama ain't happy ain't nobody happy." More to the point, I came across something called the "gut brain axis" and the "gut lung axis." Apparently it's to our benefit to keep our gut "microbiota" healthy, as there is some sort of interaction between the gut and the lungs. And somewhere else along the way I came across something suggesting that our gut just relishes fermented food. So, "happy gut, happy lungs." Now I'll wait, full of anxiety, anticipating a post informing me that all this is a bunch of balderdash that has long-since been debunked. Grins, Don
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