3% Saline vs. 7% for Nebulizing

@kathyjjb Yes, at one point I was at 1+ and was encouraged but the past several months they have come back 3+. Finally, this week I was able to get an appointment at UF Health Shands NTM Clinic. My doctor has referred me before but they kept telling me they were not taking new patients. I have an appointment in August to see Dr Natalie Moguillansky

@mjb24
Were you under the impression that using 7% saline alone would produce a negative culture for you?

@cwal No, certainly not but along with the daily antibiotics and Arikayce I had certainly hoped for a negative culture. I had also hoped to keep the bacteria load down. Since the bacteria thrives in the mucus, keeping up with airway clearance is a very important treatment aspect. Inhaling 7% saline really helps me to expel a lot of crud from my lungs and maintains a salty environment which MAC typically will not thrive in.

@mjb24
I see. Did not know that background info as it was not in that statement. I am glad you did not think that since it is the rare person that is lucky enough to achieve that. I am sorry to hear your frustration and disappointment with your fight. This disease is truly relentless. I hope you are able to find a path to better health.

@cwal Thanks! Yes, I do get frustrated. I guess I expected to take the meds and do everything I could and be "fixed". Of course, MAC is stubborn but I am too, so I keep going, keep counting my blessings and look forward to better results when the time is right.

@cwal A few studies that have shown up to 25% negative test result after nebulizing 7% , 2/day with ACT. It did not show to be so effective when cavities were present, I don't believe any of the study participants with cavities ever achieved a negative without antibiotics. Participants included those with MAC, Abscessus, etc. and the results didn't discriminate. I know a 7% saline nebulizing study at Univ of Oregon has or is winding down-nothing published with 50 or 100 participants-so more info should be released within the next year. I believe that study included people on antibiotics. It would be nice to see a large-scale study of at least 100 nebulizing prior to antibiotics. I was diagnosed with M.Abscessus in 11/24 (and symptomatic). I am so thankful for my pulm doctor for telling me I needed to start nebulizing immediately. He had the compressor and supplies on STAT and I got them within a few days. Last year, I had 3 negatives and in the fall positives but low counts (32, 22, 8). So, it's still there but no change in my CT's and counts are very low.

@kathyjjb
That is great you've had that much success. Have you had to take the Big 3 as well?

@cwalt6252 Thank you. Boy. that's a story about the Big 3. I was diagnosed 11/2024. My local ID doc started me in April 2025, at that time I was scheduled to go to NJH for an evaluation less than 3 weeks after I started the big 3. Prior to starting, I sent sputum samples to NJH. When I met with the NJH ID doctor, she told me that my CTs haven't changed and my count is so low that I could go off the anti-biotics. She told me that my count was only 32 before I started the antibiotics. A count of 400 would be considered high. So, yes but for only 3 weeks. Now, 1 year later I'm still testing low with 3 negatives in between. I had a culture done last month (still haven't gotten the results yet but my ID doctor messaged me that it's going to be very low again since both the smear and solid agar culture were both negative, but growth observed in fluid. For some people, NTMs just go away. For some it comes and goes, and then for some it progresses. I still have it and hope the counts stay low or goes negative again. At this point, I go to NJH every 6 months now and send in sputum samples every 4 months. The key is to watch for CT changes, symptoms and cultures-all 3. And to complicate things, the culture test results are only as good as the culture sample. So, I just try to follow my doctors advise and stay informed on my disease(s).

@mjb24 What is 1+ and 3+? I've never seen or heard of that before? I'm glad you got into an NTM clinic.

That is a number shown in the results when submitting a sputum sample. It is the number of acid-fast bacilli shown in the sample: 1+ equals few, 3+ equals moderate.