Two bits of good news!! (and nebulizing with saline)

Hi all, I noticed that the study did not look for MAC or NTM in their patients, only other types of bacteria ("At baseline 60% of the participants in the IS group and 55% in the HTS group had a positive sputum culture for Pseudomonas, Haemophilus, Aspergillus, Staphylococcus aureus or Streptococcus with no significant difference in isolates between groups.") We don't know whether any of the participants had MAC. For those of us with MAC, as well as bronchiectasis, the study @windwalker (Terri) and @alleycatkate (Kate) posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/) suggests that 7% would be necessary to keep MAC under control.

Hi again, I hadn't read @windwalker Terri's comments on MAC when I posted the comment above. I completely agree with her comments!

Thanks for your reply. The study is only meaningful for those of us who cannot tolerate 7% or, in my case, 3% as well. It tells m, and anyone else with inflamed, delicate airways that using .9% is not a waste of time.

@rits Thanks for posting the study. It's greatly appreciated! Yes, it's important to see that using .9% is not a waste of time for airway clearance for those who can't tolerate 3 or 7%. (When I posted my comment, I was just worried that those who had MAC and could tolerate 7% might think 0.9% would control the MAC.)

Hello, folks ! Ok.... I have been reading these posts and educating myself as I go along. Question. Does anyone out there who has MAC and bronchiectasis NOT use saline nebulizing as part of their treatment? I ask because this part of therapy has never been mentioned to me and from what I'm reading, nebulizing seems to be an important addition to plan wellness. Am I missing something?? Also I have been on the BIG3 since Jan 2019. Knock on wood so far I'm tolerating it well. However, I did start to experience some tinnitus ( ringing and whooshing in my left ear). When I mentioned this to my ID doctor's nurse and she "checked with the doctor", I was told " Dr. said that it couldn't be the meds, it must be something else." Yet, I've read over and over MAC patients on these antibiotics do most likely at some time develop tinnitus. I really like this doctor but I'm getting "concerned" that she may not be that learned in MAC/Bonchiectasis. I'd appreciate y'alls input. Thank you !

@toni1132 I will comment on the tinnitus first. Go with your gut. Without bring disrespectful towards any physician, what you said about that doctor is probably accurate. Some doctors are way more knowledgeable than others about MAC and Bronchiectasis. As far as nebulizing saline I have found that the majority of the members on this site do very beneficial daily airway clearance in one form or another. Another extremely important thing I have learned is that we need to advocate for ourselves with this disease. irene5

Hi Toni1132. In 2017 I was diagnosed with bronchiectasis and MAC avium strain. Once recovered from the “initial” sickness (took 3 months), I met with infectious disease specialist to determine treatment. my system does not tolerate meds well and because I was able to function without feeling poorly, I determined to not start treatment and so far have not started any meds for Mac or bronchiectasis. I do use an over the counter regular saline spray twice a day (found by allergy stuff) recommended by my pulmonologist. Nebulizing is something I can go to, but because of my sensitivities my first option is always the path of least resistance. My Mac has remained pretty stable and is watched carefully with CT scans.

All I can tell you is that my very confident doctor knew very little about Mac. It’s a fairly rare disease and even seasoned respirologists/pulmonologists aren’t experts in treating Mac and I needed to find someone who was.

That was hard and my respirologist was livid because I got my GP to help me but it was well worth doing.

Good luck

Rita, so happy you're doing okay with 0.9 and with support of your Doc too boot. I do remember seeing something on the forum about 7% being more lethal to MAC "microbes." Me, well when I took my first huff of 7% and it sorta "closed down" my throat for a while I was impressed..."this stuff must really kick butt." I've not read the study your Doc steered you to, but I will. I'm glad to hear the 0.9% might be equally effective. If for no other reason that I can buy it w/o Rx from Amazon. Don

@toni1132 Hi. You asked about nebulizing with saline solution. Here's my story. After being with 2 previous pulmonologists over a period of 20 years who never mentioned nebulizing at all, I began working with a 3rd pulmonologist 3 years ago who suggested during my 2nd or 3rd visit that I nebulize with 7% saline. I had been diagnosed with bronchiectasis in 1997 and then with MAC in 2008, both diagnoses made by the first pulmonologst. I liked him very much and thought he was pretty well informed about my issues. I had to leave him because of changes in my insurance. The second pulmonologist was young and sweet and poorly informed about my issues. By the time I came to her I knew more about bronchiectasis and MAC than she did. She left her practice to work for an insurance company. This is all to say there are big differences in pulmonologists, differences in knowledge, skill, dedication and opinions. You have to find the one that is right for you. Nothing has made as big a difference in my quality of life as the nebulizing has. This practice works to clear my lungs, ease the strain on my voice, and reduce my coughing. But that's just me. i know from this forum that nebulizing daily with 7% saline solution doesn't work for everybody. Good luck in finding the doctor and the treatment that works for you.