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

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@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 @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

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@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

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@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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@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.

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

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

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@alleycatkate

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

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

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You have described the situation I find myself in. Have no clue about what it really means. Tested positive for MAC by induced sputum sample. Several months later my pulmonologist repeated the induced sputum test. The result was three negative acid fast smears. No treatment at all except my typical protocol of airway clearance via 3% hypertonic saline twice a day. Am anxious to learn more about what this means and what to do from here.

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@windwalker

@sayaboleh Yes! I am so glad that you posted this! My mayo dr has said that it is upsetting to him that so many drs put mac positive people on the Big 3 meds right away without giving the body a chance to get rid of it on it's own. Some people have a decent immune system and it will get rid of the bacteria on it's own. Whereas, others, like me; are immunocompromised. The immunocompromised folks need to be more diligent with meds, hygiene, and everything else we do to avoid reinfection or adding the bacterial load.

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My daughter also was not treated and has been symptom free for over a year. ( See my post under hollyw last month). In researching this I found in 3 studies that "untreated patients with MAC lung disease have a high rate of progression with approximately 40 to 60 percent of patients showing signs of clinical and/or radiographic progression over the next 2 to 10 years of follow-up " . They would have treated her when she first presented because she was so sick with cavitations, effusions, severe anemia,and high CRP and ESR all of which are risks for progressive disease. But they didn't get the cultures back until she was out of the hospital and looking like a rose! They opted to not treat at that point and told her just to watch for symptoms. She needs to get follow up testing but is very reluctant as she lost her insurance , so I am gathering data to try to get her to at least get sputums and blood work and maybe a chest xray. She has reduced her risks factors by getting off chronic steroids ( she has chronic severe asthma that is now in good control) , diet and herbal treatments ( she has experimented with going off certain foods that are considered " inflammatory" and found her asthma was better) . I am hoping to find a specialist who takes her current insurance down in Boston ( we live up in Maine).Meanwhile , we work with her local PCP and keep our fingers crossed that she can boost her immune system enough to be one of the 50% who keep from progressing or relapsing.

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@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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Hi. Just getting around to sending input regarding NAC. In October I had completed two weeks of IV antibiotic treatment via PICC line and at the end of my 28 days inhaling Toby. I had not been able to collect a sputum sample to see if my Pseudomonous A. Was gone. I had read posts about NAC so purchased some. I took one 500 mg and the next day I coughed hard, chest rattled and up comes sputum 4-5 times. I was thrilled but just could not believe that was from NAC. I did not take it that day but did the third day. More coughing up that green/yellow/brown stuff we're familiar with. This happened three times. I was thrilled to be able to clear that stuff out. Now I'm feeling like my old self–not short of breath, eating, gaining some weight back.. I continue doing 3% SC daily and taking NAC once daily. I ask my MAC doctor now he feels about me taking it and he said he has several patients taking it and he said to take 2 twice a day. At the moment I still take only one daily but if symptoms flair up I'll increase it. Hope these comments are helpful. Also my initial lab results came back negative but now waiting for AFB to culture out. Praying it will be negative also. God bless you.

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@poodledoc

N Acetyl Cysteine

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Thank you.

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