Negative sputum results without treatment

Posted by sayaboleh @sayaboleh, Sun, May 12 10:51am

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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@sayobaboleh
Mary
I was testing positive for over a year for mycobacteria Abcessus which I guess is the bad kind more of a fast grower. Then I tested negative for the last couple of years. I went to the mayo and they said I could start antibiotics but my CT scan wasn't bad enough if I wasn't ready. They wanted me to start on different Iv's to start with if so did. Im glad I didn't go on them since I started to test negative after that. I hadn't heard about the 40-60 spontaneous conversions. I know my dr said not to worry unless three tests came back positive though. I did have about 7 come back positive in a row.
Glad your doing well now!
Shari

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@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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@windwalker Hi Teri, do you know of anyone who has experienced erythema nodosa (red, raised skin nodules) usually along shins, arms, associated with MAC, m. Abscessus?

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@pfists @windwalker Regarding the 40-60 conversion sputum rate, I was happy to find the following article that helps substantiate those numbers. https://www.ncbi.nlm.nih.gov/pubmed/28275170

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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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I was thinking that as well! I remember when I was first diagnosed and there was much discussion about treating with the big 3 even though I had no symptoms. I was told that there was a risk involved with not starting treatment although it was not clear what that was! I was almost ready to go down that road again recently. It would seem that my cold was a blessing in disguise as I would never have produced any samples for testing otherwise. I still have Bronchiectasis but it is such a load off my mind not to have MAC as well.
Mary

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@alleycatkate

@pfists @windwalker Regarding the 40-60 conversion sputum rate, I was happy to find the following article that helps substantiate those numbers. https://www.ncbi.nlm.nih.gov/pubmed/28275170

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@alleycatkate Thanks for posting this. I was struck by the number of studies coming out of South Korea, apparently a hotbed for MAC in Asia. I wonder why. There is not much known about MAC in Asia, esp. in Singapore. I saw a cardiologist there some years ago and he was very surprised to hear that I had MAC. He thought that it affected only those with HIV.

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@sayaboleh Mary…Hello! I was looking for the original post (yours) mentioning the sputum conversion but could not find it. Your posting was the first that I had heard of this possibility and it is so very promising. I wonder why it is not more publicized? It does give a lot of hope. I appreciate your wake-up on this possibility. Thanks You! Kate

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Just saw this article on the positive effects of NAC on bronchiectasis. I have taken this supplement for several years and seems helpful. https://bronchiectasisnewstoday.com/2019/05/09/n-acetylcysteine-potentially-beneficial-bronchiectasis-patients/

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@pfists

@sayobaboleh
Mary
I was testing positive for over a year for mycobacteria Abcessus which I guess is the bad kind more of a fast grower. Then I tested negative for the last couple of years. I went to the mayo and they said I could start antibiotics but my CT scan wasn't bad enough if I wasn't ready. They wanted me to start on different Iv's to start with if so did. Im glad I didn't go on them since I started to test negative after that. I hadn't heard about the 40-60 spontaneous conversions. I know my dr said not to worry unless three tests came back positive though. I did have about 7 come back positive in a row.
Glad your doing well now!
Shari

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@pfist Hi Shari. Are you getting regular lung function tests done to make sure your FEV is not on the decline?

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@brigby

@windwalker Hi Teri, do you know of anyone who has experienced erythema nodosa (red, raised skin nodules) usually along shins, arms, associated with MAC, m. Abscessus?

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@brigby No, I have not, but I have read about it in the past. Do you have that going on now?

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@alleycatkate

@pfists @windwalker Regarding the 40-60 conversion sputum rate, I was happy to find the following article that helps substantiate those numbers. https://www.ncbi.nlm.nih.gov/pubmed/28275170

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@alleycatkate, Thank you for posting this. I did not understand the second to the last sentence though. If a patient tested negative at their initial diagnosis, wouldn't they have a better prognosis? Also, we all need to put some pounds on it sounds like.

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@sayaboleh

I was thinking that as well! I remember when I was first diagnosed and there was much discussion about treating with the big 3 even though I had no symptoms. I was told that there was a risk involved with not starting treatment although it was not clear what that was! I was almost ready to go down that road again recently. It would seem that my cold was a blessing in disguise as I would never have produced any samples for testing otherwise. I still have Bronchiectasis but it is such a load off my mind not to have MAC as well.
Mary

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@sayboleh Hi Mary. So GLAD you are mac-free!

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@sayaboleh

@alleycatkate Thanks for posting this. I was struck by the number of studies coming out of South Korea, apparently a hotbed for MAC in Asia. I wonder why. There is not much known about MAC in Asia, esp. in Singapore. I saw a cardiologist there some years ago and he was very surprised to hear that I had MAC. He thought that it affected only those with HIV.

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Hopefully, the drs are getting wiser about mac.

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@alleycatkate

@sayaboleh Mary…Hello! I was looking for the original post (yours) mentioning the sputum conversion but could not find it. Your posting was the first that I had heard of this possibility and it is so very promising. I wonder why it is not more publicized? It does give a lot of hope. I appreciate your wake-up on this possibility. Thanks You! Kate

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@alleycatkate National Jewish Health claims they have a good conversion rate. You can probably look it up on their website. A doctor from NJH who spoke at the 2016 World NTM convention had stated that.

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@windwalker

@brigby No, I have not, but I have read about it in the past. Do you have that going on now?

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@windwalker The dermatologist biopsied a spot on my elbow yesterday. It will be a couple of weeks before we get results. Her guesses were granuloma annulare, or maybe sarcoidosis, rather than erthyma nodosa.

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