1. < MAC & Bronchiectasis

Negative sputum results without treatment

Posted by sayaboleh @sayaboleh, May 12, 2019

Has anyone had spontaneous sputum conversion without taking the big 3? I was told recently that my latest samples produced no pathogens -- i.e. MAC organisms. That is great news of course -- I had no idea that would happen but found some studies that 40- 60% can spontaneously convert without the benefit of treatment. I was diagnosed about 8 years ago and just assumed I would always have it. I have had no symptoms other than a flare up recently when I caught a cold, hence the sputum samples to figure out what was going on. I was given a long explanation by my pulmonologist which was a little difficult to follow. Would love to hear from others if they know anything about this.
Mary

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lorifilipek | @lorifilipek | Dec 4, 2019

Hi again. I’m also interested in 7 % saline. I haven’t been able to get a prescription for it from my ID doctor yet. I’ll ask again next time and show her the paper AlleycatKate posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/). In the mean time, I found a “pocket neti Himalayan sea salt inhaler” on the web that’s about the size of a chapstick. Has anyone had any experience with it?

REPLY
2 replies
kayekuz@kayekuz | @kaykuz | Dec 5, 2019
In reply to @lorifilipek "Hi again. I’m also interested in 7 % saline. I haven’t been able to get a..." + (show)
@lorifilipek

Hi again. I’m also interested in 7 % saline. I haven’t been able to get a prescription for it from my ID doctor yet. I’ll ask again next time and show her the paper AlleycatKate posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/). In the mean time, I found a “pocket neti Himalayan sea salt inhaler” on the web that’s about the size of a chapstick. Has anyone had any experience with it?

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Hi.....I am new to this site....I do read all the posts but have never participated....I was diagnosed with MAC and Bronchiectasis four years ago... I took the Big 3 for a year . Then a year ago my FL pulmonologist did a Broncoscopy and found that MAC had returned....He did not put me on the antibiotics again.....but albuterol twice a day....In July I had blood in my mucus and coughing more than I ever had....Ended up going to the Cleveland Clinic in August....My doctor there put me on the 7% saline solution twice a day along with albuterol...Have a say in over a week my mucus was clear and I wasn't coughing or clearing my throat as before......Hope you give it a try....It worked for me...

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1 reply
nannette | @nannette | Dec 5, 2019
In reply to @lorifilipek "Based on several comments in this discussion, I am interested in taking NAC. Thanks! However, I..." + (show)
@lorifilipek

Based on several comments in this discussion, I am interested in taking NAC. Thanks! However, I read that NAC can cause hemoptysis. Has anyone had that reaction to taking NAC orally? I was diagnosed with mild bronchiectasis (with a couple small nodules) and MAC after coughing up blood a couple of years ago, while lap swimming. Last month I again coughed up about 2-3 TBS of blood on going to bed. Other than that, I have had no symptoms and don’t take antibiotics. I am 72. I exercise and walk 2-4 miles almost every day and my spirometry/breathing results are normal.

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@lorifilipek I've been taking NAC for over a year now (or maybe longer) and haven't had any issues. I have bronchiectasis, did the big three, testing negative for MAC right now. I've only heard positive things about NAC. Nan

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1 reply
rits | @rits | Dec 5, 2019
In reply to @kaykuz "Hi.....I am new to this site....I do read all the posts but have never participated....I was..." + (show)
@kaykuz

Hi.....I am new to this site....I do read all the posts but have never participated....I was diagnosed with MAC and Bronchiectasis four years ago... I took the Big 3 for a year . Then a year ago my FL pulmonologist did a Broncoscopy and found that MAC had returned....He did not put me on the antibiotics again.....but albuterol twice a day....In July I had blood in my mucus and coughing more than I ever had....Ended up going to the Cleveland Clinic in August....My doctor there put me on the 7% saline solution twice a day along with albuterol...Have a say in over a week my mucus was clear and I wasn't coughing or clearing my throat as before......Hope you give it a try....It worked for me...

Jump to this post

Hi Kayekuz, do you take the albuterol as a neb solution or an inhalant? Do you take it before, or after the saline or, If a solution, do you mix it with the saline? My lungs will not tolerate saline even the 3%. I, and my doctor, would like me to use it but, at least until I finish with Arikayce which also "upsets" my lungs, I can't do the saline. I'm interested in whether Albuterol would help.

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1 reply
alleycatkate | @alleycatkate | Dec 5, 2019
In reply to @lorifilipek "Hi again. I’m also interested in 7 % saline. I haven’t been able to get a..." + (show)
@lorifilipek

Hi again. I’m also interested in 7 % saline. I haven’t been able to get a prescription for it from my ID doctor yet. I’ll ask again next time and show her the paper AlleycatKate posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/). In the mean time, I found a “pocket neti Himalayan sea salt inhaler” on the web that’s about the size of a chapstick. Has anyone had any experience with it?

Jump to this post

Hi @lorifilipek ...In response to your question regarding NAC, I have had no negative responses to the supplement, only good results. Also, I have found the 7% saline solution to be very helpful. I had my GP call in a script to our local medical pharmacy (they carry the nebulizing units) as well as the saline...Sodium Chloride Inhalation Solution, USP 7% .... 4 ml twice a day). The other thing I take that I have really found helpful is an herb, Astragalus. It is an adaptogenic herb...It works on so many levels and is beneficial to the lungs in clearing congestion but the big advantage I found is that I have not gotten sick since taking it for several years now. It boosts the immune system. Good luck on your path with these bugs and Best Wishes!! Kate

REPLY
1 reply
lorifilipek | @lorifilipek | Dec 5, 2019
In reply to @alleycatkate "Hi @lorifilipek ...In response to your question regarding NAC, I have had no negative responses to..." + (show)
@alleycatkate

Hi @lorifilipek ...In response to your question regarding NAC, I have had no negative responses to the supplement, only good results. Also, I have found the 7% saline solution to be very helpful. I had my GP call in a script to our local medical pharmacy (they carry the nebulizing units) as well as the saline...Sodium Chloride Inhalation Solution, USP 7% .... 4 ml twice a day). The other thing I take that I have really found helpful is an herb, Astragalus. It is an adaptogenic herb...It works on so many levels and is beneficial to the lungs in clearing congestion but the big advantage I found is that I have not gotten sick since taking it for several years now. It boosts the immune system. Good luck on your path with these bugs and Best Wishes!! Kate

Jump to this post

@alleycatkate Kate, thanks for your reply. I'm going to try to get my GP to give me a script. Regarding the Astragalus, how much do you take? Is it full herb or extract?

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kayekuz@kayekuz | @kaykuz | Dec 5, 2019
In reply to @rits "Hi Kayekuz, do you take the albuterol as a neb solution or an inhalant? Do you..." + (show)
@rits

Hi Kayekuz, do you take the albuterol as a neb solution or an inhalant? Do you take it before, or after the saline or, If a solution, do you mix it with the saline? My lungs will not tolerate saline even the 3%. I, and my doctor, would like me to use it but, at least until I finish with Arikayce which also "upsets" my lungs, I can't do the saline. I'm interested in whether Albuterol would help.

Jump to this post

Hi...I do take albuterol as an inhalant....I take it before the saline...separately..

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alleycatkate | @alleycatkate | Dec 5, 2019

@lorifilipek I take about approx 1,500 mg twice a day...astragalus root...so not extract.

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1 reply
lorifilipek | @lorifilipek | Dec 6, 2019
In reply to @alleycatkate "@lorifilipek I take about approx 1,500 mg twice a day...astragalus root...so not extract." + (show)
@alleycatkate

@lorifilipek I take about approx 1,500 mg twice a day...astragalus root...so not extract.

Jump to this post

@alleycatkate Kate, Thanks! I'll try it!

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