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Any success with saline only and no meds?

Posted by mch (Marycarol) @mch, Aug 9 3:44pm

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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kathyjjb | @kathyjjb | Aug 14 3:38pm

This is an encouraging study regarding hypertonic saline and culture conversion-attached. Study group is small but still encouraging. The Portland/NYU Langone study group will be 100, which hasn't started yet.

I have MAB, and have been nebulizing with 7% NaCl since diagnosis November 2024. I was on antibiotics for 3 weeks, but was able to go off due to low count. Doctor at NJH told me they would not have started any meds (yet), and the cavity that I was diagnosed with in September 2024 by a local radiologist wasn't a cavity after all per doctors at NJH. Due to side effects, I went off the antibiotics last May with doctors approval. So far, I have had 1 negative culture, 2nd culture, a "preliminary" negative-at 3 weeks of 2nd culture, and hoping when I go back to NJH it stays negative. The 3rd culture has been in lab now for 2.5 weeks-so I'm hoping and praying.

Shared files

Outcomes of hypertonic saline inhalation as a treatment modality in nontuberculous mycobacterial pulmonary disease _ European Respiratory Society (Outcomes-of-hypertonic-saline-inhalation-as-a-treatment-modality-in-nontuberculous-mycobacterial-pulmonary-disease-_-European-Respiratory-Society.pdf)

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bayarea58 | @bayarea58 | Aug 16 1:20pm
In reply to @kathyjjb "You're welcome. I emailed the online contact and she sent me a link to a site..." + (show)
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You're welcome. I emailed the online contact and she sent me a link to a site that will have the study results. She said the site is currently outdated and they will be updating soon, so I'll check back periodically. I added the pdf below.

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@kathyjjb the Study Details you posted show the study’s estimated end date to be in June 2025 (with a start date in May 2021). But you state above that the “Portland/NYU Langone study group will be 100, which hasn't started yet.” Are these two different studies?

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kathyjjb | @kathyjjb | Aug 16 11:05pm
In reply to @bayarea58 "@kathyjjb the Study Details you posted show the study’s estimated end date to be in June..." + (show)
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@kathyjjb the Study Details you posted show the study’s estimated end date to be in June 2025 (with a start date in May 2021). But you state above that the “Portland/NYU Langone study group will be 100, which hasn't started yet.” Are these two different studies?

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I'm not sure what the study is that started in May 2021. When I was at NJH, I was asked if I wanted to participate in a study on Clofazimine where NJH was signing up participants for a clinical study was out Portland BE Clinic. The NJH researcher told me there is a big study that's ongoing-I think multifaceted study.
The study I was referring to has not started yet, or they haven't reached their sample population of 100 yet. It's a short study, only 3 months. We should know the details as soon as they update their web site. You may also email the NYU research supervisor at: Danielle.Harris@nyulangone.org and get more details firsthand.

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kathyjjb | @kathyjjb | Aug 16 11:12pm

Do you have any cavities?

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mimimary | @mimimary | Aug 17 10:43am
In reply to @sueinmn "I understand different philosophies in life, and in managing our health. I also understand if people..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

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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You just articulated MY life and priorities, and methods! Thanks for the reassurance - but I didn't really need it. "Be sensible and enjoy life!"

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