Any success with saline only and no meds?

I 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.

@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

Yes, it all,....exercise, nebulizing, air way techniques and a good amount of huff coughing takes can take over an hour a day to do it all, to do it right. I sure understand exhausting and energy...be it physical energy or mental energy.
I just recently thought, ( I'm single) I have got to have someone come and take a video of me hopping up on the bed to do my postural drainage and positioning. I can't do it lower than that because I'm not in a thirty year old body able to get up off the floor so easily (which I tried).....I'm in a 82 and 10 month year old body and manage the position better on the pillows on the bed. It works so far but I keep asking myself...can I do this at 90, if I make it to 90. We shall see.
Glad to hear your husband took the time to be "trained" and is able to help with the percussion. I am able to do that on by own front and back. It is more of a light fist technique on my back and from experience....better than the vest.
Considering your share....I may have to try spending more time clearing to see if it helps more throughout the day.
Thank you and enjoy the hours in between our required BE routine!!!!
Barbara

Barbara, would you describe how you do the percussive self-treatment, please? How you do that without another person helping? Or, is there a video which demonstrates this?Thanks!

I’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.

Have you gone to NJH or Mayo or any other clinic that specializes in NTMs?

Months ago, I came across a UK study using 6% NaCl and the results were very promising. I don't recall the study duration but thinking it was a year or 2. NYU is currently looking for study participants for a new study using 7% saline for MAC treatment. It looks like the study is being managed out Of Portland, but travel to NYU-Manhattan 3 times during the study duration. The duration is only 3 months, but still it will be interesting to see results.

Also, I haven't delved into this at all, but just read about a Univ. of BC study using Benztropine (Drug used for tremors for people with Parkinsons), to lower Tuberculosis count. I'm going back to NJH next week and will ask my ID doctor about it and potential of using for those of us with NTMs. I was briefly on antibiotics and for now I am off of them. If and when I go back on the drugs, I will probably use Chinese herbs that have been tested and shown to boost the efficacy of some of the NTM antibiotics.

Great info and thank you for sharing! I also looked into the NYU study about 7% saline for MAC but had already started a bronchial hygiene regimen with 3%. If anyone has not yet started saline nebulizer then they would be eligible. I wish I would have known about it earlier. I’m in one study at Mayo about predicting outcomes of those with MAC but it’s nothing related to treatment.

The study I found about the 7% saline was from European Medical Journal. I’d definitely be interested if there was another study here in the US.

Have you gone to NJH or Mayo or any other clinic that specializes in NTMs?

Months ago, I came across a UK study using 6% NaCl and the results were very promising. I don't recall the study duration but thinking it was a year or 2. NYU is currently looking for study participants for a new study using 7% saline for MAC treatment. It looks like the study is being managed out Of Portland, but travel to NYU-Manhattan 3 times during the study duration. The duration is only 3 months, but still it will be interesting to see results.

Also, I haven't delved into this at all, but just read about a Univ. of BC study using Benztropine (Drug used for tremors for people with Parkinsons), to lower Tuberculosis count. I'm going back to NJH next week and will ask my ID doctor about it and potential of using for those of us with NTMs. I was briefly on antibiotics and for now I am off of them. If and when I go back on the drugs, I will probably use Chinese herbs that have been tested and shown to boost the efficacy of some of the NTM antibiotics.

@kathyjjb, Could you explain which Chinese herbs you meant here?

Thanks!
Ling