7% Saline Success Story that warmed my heart.
Last year, I met a woman at our winter church who has had MAI (MAC) and Bronchiectasis for years, and had a horrible chronic cough. When she heard that #1 I knew what it was, and #2 I was on Mayo Connect, she started asking questions.
Over many conversations and text messages I convinced her to give 7% saline and airway clearance a try. Her doctor here never heard of it, so her husband ordered it on Amazon & she started using it daily.
Yesterday, she was waiting by my usual pew when I arrived at church and said to me, "I need to hug you. You saved my life!" She went on to explain she convinced her pulmonologist back home to order it, got Medicare to pay for it, and used it twice a day for months. By Fall, she was down to 5 times a week, and now she uses it twice a week (but daily airway clearance.)
Here was her story - in 2022 she was on antibiotics and/or steroids 19 times. She coughed a lot during the day, all night long, and whenever she tried to exert herself.
In 2023, she had ZERO exacerbations requiring antibiotics or steroids. She coughs far less (they used incense in our service, I was hacking up a lung, and she only coughed once or twice.) Her lung function improved 12% between her Spring appointment and December. She has been able to regain a little weight.
This is a lot like my experience with 7% saline and rigorous daily airway clearance. I made it through 2023 with one exacerbation that required steroids, no antibiotics. My lung function has held steady for 4 years using only airway clearance & saline. In my case I also use oral NAC and Mucinex because I have very "sticky" mucus and it helps keep it thin enough to expel.
Has anyone else managed to "ditch the Big 3" by using airway clearance and saline?
Sue
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I'm not clear about what airway clearance is supposed to mean. May I ask if you could kindly explain it?
If your blood pressure is highly "sodium sensitive" it is possible to see a rise - but it didn't seem to make any difference for me.
I did the calculations a while ago, and for each 7% neb you will inhale 280 milligrams of sodium, a portion of which will cross the cell barriers into your blood stream. The remainder will be coughed out or remain in the mucus in your lungs.
So, if you assume 1/2 the sodium gets to your blood, that is 140mg, or less than the amount in a slice of bread or one ounce of cheese. Even using 7% saline twice a day, the added sodium is less than the 2000 mg RDA, and should be able to be compensated for by adjusting your diet.
For example, replace one 4 oz beef patty (400 mg) with 4 oz of chicken (100 mg).
Sue
I suppose I should give the 7% sodium inhalation a try while monitoring my blood pressure at home.
Due to just beginning to comprehend much of what is good to do with BE I decided to read again the posts where you and Sue mentioned Glutathione. I have a slight, per October sputums at NJH, showing of Macobacterium avium intracellulare. NJH indicated they did not want to start anti biotics because3 sputum viles showed so little infection. Hope that was the right decision...we shall see. My PFT all good results. To me my main problem at this point, is the slight MAC and the moderate showing on the C Scans. The only thing NJH suggested and started me with is the Vest, Aerobika, and 7% for nebulizing. I have started taking liquid guaifenesin and going to look into the NAC. I also take several supplements including D, Zinc, C, Garlic, Tumeric, Fennel etc. etc. Have you had any experience with Mullein or thoughts about it ? Is the Glutathione taken due to Bronchiectasis or another type of problem? What would that be prescribed for?
I wanted to neb the glutathione but it was not helpful. If you are mild I have read it is not a great choice to neb. I use it sublingually. It is great for your immune system...strong antioxidant. I periodically have an infusion therapy too that has glutathione in it and other vitamins etc. It is $$$ and hard to find a place that ships it correctly (needs to be kept cold).
Everything you are doing sounds great. I do the Neil Med nose rinse too with saline. All these things help keep you healthy! 😎 Never tried the Mullein. No script needed for the sublingual Glut.
You mentioned "infusion therapy with gluathione with other vitamins". In the future I might consider this after I get the basics understood. How have you been able to do it? Do you do it yourself or go to a facility? Where are you securing it from, what source etc.?
I have been fortunate to be in OKC for many reasons....but...now that I have a Chronic Health Problem I'd rather be near a specialized Bronchiectasis program. After all I have learned in the last couple of year, if I feel it would be better to be closer to such a facility, I might make the leap to move eventually. Depends upon how it all unfolds in the next year here in OKC. Good medical facilities, experienced doctors and convenience is so important, especially at this late stage of my life.
Oh yes I forgot to mention an important fact. 🙄 I have hesitated with the Neil Med nose rinse that NJH suggested, however, with my just getting a better understanding of what is going on with having BE, I now know I need to start the rinse. I may do the netti pot. Any thoughts about netti pot vs Neil Med Rinse Bottle? Going to boil the distilled water and let it cool before using it or placing it in the item to be used with the saline rinse.
Interesing side bar: I revisited with the long term, experienced ENT last week and he is not a fan of the Neil Med bottle. He said it is too much force. He prefers the netti pot etc. So many different thoguhts on so many things.
I have noticed Mullein mentioned by a few in Mayo and read about it previously. Holding off on it. I try to remember to try one thing at a time to see what type of reaction or change might come about.
Thank you for taking time to read and respond. Hope all is good today for you and your husband.
There is a medical facility here run by doctors, PA's and nurses that do the infusion. They take a full history and examine you then after discussing your condition they concoct what they recommend. I have had great results. I do it b4 travel, when exposed to something, when I feel I might be catching something and when I am trying to get over something stubborn.
I put in a reverse osmosis water filtration system...well worth the money but I still use distilled to mix the NeilMed but use the filtered water for drinking, cooking and washing my device pieces and all fruits and veggies. I am not a netti pot girl but it's a personal choice. Both achieve the same thing. Hope that helps!
SO appreciate your contributions to this forum! But could you spell out just what "infusion" you're referring to, what's in it other than glutathione & glutathione in what form? & what kind of MDs or other practitioners prepare it for you & where are they located? Also - last question, I promise 🙂 what brand & form (pill, capsule, powder) of sublingual glutathione do you (also?) "deploy"? Thanks!
allessandre
Hi Allessandre!
Infusion is an IV drip. The medical staff will determine what is best for you at the time...mine had a long list and it is different each time. B vitamins, zinc, NAC etc. I don't know what you mean by glutathione form but it all goes through the IV, There are different doctors (usual MD with a medicine or functional medicine specialty), PA's and nurse practitioners also there. I am in the Houston Area. I use Quicksilver glutathione liquid(eyedropper). I wish I could find it stocked here as there is sometimes an issue of it arriving cold when you order. But I have not found that yet. I hope this helps!!
Me too. I'm new to this and it's still a big hassle. I'm nebulizing with 7% saline and using a couple of different flutter valves. What's unclear is: which flutter valve or other device is best for most people, how often do you wash the parts and with what, how often do you sterilize and with what. I have gotten different stories from the manufactures brochures. I bought a baby bottle sterilizer that works in the microwave. Since this problem isn't going away ever, maybe I should invest in something easier and if so what? Maybe someone has a link to a article that deals with all this.