Any success with saline only and no meds?
Been on three med regimen for over 2 1/2 years. Still positive for Mac. Contemplating stopping the meds and continuing only with 7% saline twice a day plus ACT plus postural drainage. Not expecting this to clear the infection. Hoping it just keeps my CT stable. Wondering if anyone else is in this situation and whether you’ve had success avoiding the progression of the disease. I also have one small spot of bronchiectasis the CT.
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I understand different philosophies in life, and in managing our health. I also understand if people want "do whatever I can to avoid NTM's if we lived solely by "only protocol" ", but I have a laundry list of other conditions to manage as well. If I did everything, every day to treat each condition optimally, that would be the sum total of my life.
I have been blessed with over 70 years on this planet, so my attitude may be a bit different than others', but I operate on the 80/20 rule. I follow the most important 80% of my personal health guidelines pretty faithfully, and ignore the other 20%.
Top of my list:
Diet
Exercise
Rest
Airway Clearance
PT for my many ortho/arthritis issues
Take my meds as ordered
Air filtration (HEPA filters indoors, masks when warranted, stay in during poor air quality)
Not on my list:
Boiling drinking/veg washing/cooking water (.2 micron filter at tap, drink that or bottled spring water)
Concerns about outdoor swimming & recreation (any germs highly diluted)
Concerns about infrequent, incidental exposure (eg steam from dishwasher or boiling pot)
What I drink when I eat out
Showers (water heater set above 135F, rainfall shower head)
Are you a "belt and suspenders" person - following every recommendation, or do you pick and choose? What does ypur list look like?
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15 ReactionsThank you all for your comments and sharing your journeys. Me: CT showed suspected MAC for 2 years, finally a positive broncoscopy and sputum test and met with ID dr at Mayo - FL. When I asked him about a study showing some positive notes for nebulizing with 7% saline, he said to talk to Pulm dr about it and maybe if I can get my count low enough my immune system can “take care of the rest”. So my question is: does this mean it’s possible to get rid of MAC withOUT antibiotics? has anyone else been told something similar? I’m doing bronchial hygiene with levalbuteral, 7% saline, Brevespi in haler, flutter valve, then huff coughing 2x per day. Feeling better overall but short of breath when I exert myself. But could be I’m just out of shape since no real exercise since bout of pneumonia in Feb. that finally led to diagnosis. I do have some bronciectasis in the lower lungs, which I know is permanent. So assuming the bronchial hygiene is part of my life forever.
See ID/pulmonologist at Johns Hopkins. I use been on azithromycin and rigampin for 2 1/2 years. Couldn’t do ethambutol because of vision. Tried arikatce for over a year. In February, Dr. added clofaziminee, but said he considers it a lateral move and not likely to clear the infection.
Thanks for your thoughtful response. I too have reached the point of taking an 80/20 approach. My list is actually very similar to yours in terms of the things I do vs the things I make reasonable life compromises about. Another I would add is that when I travel, I do stick to my two times a day nebulizer saline as much as I can, but if a busy schedule limits me to one a day, I don’t beat myself up over it. I also don’t worry about boiling my Neb cup when traveling. I soak in hot soapy water for 15 minutes, rinse, thoroughly, and my final rinse is with water. I have filtered through a sawyer filter which meets necessary criteria.
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5 ReactionsI’ve read similar studies about the efficacy of 7% saline. I discussed with my pulmonologist whether the saline would at least keep my infection stable. He used an analogy that the saline is like brushing your teeth; it can keep new problems from arising and perhaps current ones from getting worse. But don’t count on it alone to eradicate existing problems. I thought that was a reasonable way to look at it. I do worry that I am taking a risk by dropping all the meds if I still have an active infection. My doctor suggested trying that for six months and see what the next CT looks like. He indicated that if there was “progression“, it would likely be minimal and we could reassess at that point. I don’t really see that I have a good alternative because at best the meds are keeping me stable, and I guess that’s the big question… To what extent is that the case. But I can’t stay on these meds indefinitely if they’re not clearing the infection. So it seems like I have to try a different approach, hope for the best, and hope that in the longer term we have some new options like phage that will actually make a difference.
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2 ReactionsI have felt your anguish and anxiety.
Peace and the best health you can have.
Ann P
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3 ReactionsGlad to hear your story.
My journey, first showings of something had changed in my system, began approximately in 2017 and finally diagnosed in 2022 with BE. Diagnosed with MAI in 2023. I did not start the antibiotics as suggested in 2024 and have not had, so far, an exacerbation and feel well. I do the 7% saline two to three times a day, the postural drainage, air way clearance techniques and huff coughing. I do have a good deal of mucus that I clear with using the saline and then it comes up to the throat all day long, especially after eating and I clear nearly all the time with the feeling of mucus in my throat.
My question to you is, do you have the same, much mucus when doing the saline and then the feeling of mucus in the throat and the need to clear all during the day?
Barbara
I am on no medications nor saline. I use my Aerobika twice a day. I have exercised all my life and have been on a Mediterranean diet for over 20 years — and yet was diagnosed with MAC/bronchiectasis 2 years ago. I tried the meds and feel much better off of them. Other than a diagnosed fungus in my lungs showing in addition to the MAC/BE I have no other health issues.
Everyone is different so what works for one may not work for others.
Best wishes!
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5 ReactionsI will cough up mucus throughout the day unless I am vigilant, nebulizing with 7%, using the aerobika, doing back and side percussion (my husband was “trained” by the respiratory therapist), huff coughing and postural drainage. Yes - all of it. My technique has improved over the 6 years since I stopped taking the Big 3 and rely on airway clearance to stay well.
If I do all of that until there is nothing left to cough up, I don’t usually cough again until the next time I nebulize. I nebulize twice a day but I often do the whole routine once a day. Even so, it is exhausting and takes over a hour and some days I simply don’t have the energy or will to do it.
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2 Reactions@sueinmn , I was recently changed to Symbicort from Wixela ( generic Advair). My Medicare part D drug insurance pays for it but not the Wixela or Advair. Are you saying the Symbicort helped you ( but your PFT was what? better or worse) I know that Cleveland clinic & national Jewish are now saying on their websites that even inhaled steroids have consequences for bronchiectasis, but without them, I cannot breathe. I am due for another PFT next month