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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Terri Martin, Volunteer Mentor | @windwalker | May 23, 2019

In reply to @sayaboleh "@windwalker Hi Terri -- I think there is a lot still to be learned. I think..." + (show)

@sayaboleh

@windwalker Hi Terri — I think there is a lot still to be learned. I think there has been knowledge gained but it is very incremental and not entirely conclusive. I think it took a while to come up with a clear definition of an 'exacerbation' part of the decision-making of whether to treat or not. Seems like that was a big deal for clinicians/researchers. There is no doubt that there has been substantial increases in infection rates in parts of the world that are alarming, but no one really knows why. I noticed that some of the data presented was somewhat dated so found it difficult to ascertain what was new. I gather the challenge for epidemiologists is that NTM is not a reportable disease or not reported well where it is. (I brought that up elsewhere)
As for treatment, It was clear that inhaled antibiotics is the next big thing although there was no mention of costs — which I hear is prohibitive as with all new drugs. No one at the conference seemed concerned so I gather there must be some way to deal with that. I saw a list of 7 ongoing clinical trials for these and a statement that none have been approved (I thought Amikacin was??) I learned that some antibiotics can result in QTc prolongation, something I have to watch out for. There was mention of a drug called Bedaquiline used for TB years ago and recently shown to be effective for NTM as well, with the caveat that it is dispensed from just ONE pharmacy in the US and that it costs $30K for 6 months (learned elsewhere).
There was a lot of information/data presented and sometimes no clear explanation of what it all means to us lay people. I was quite overwhelmed sometimes. It would have been nice to have occasional small breakout groups – will provide that feedback. I just learned the next world conference is in Vienna in July. Would be nice to go that one although twice in a year seems like too much…:-)
Mary

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@sayaboleh Thank you so much for that recap Mary. Gee, it doesn't sound like they are making much headway with MAC. I appreciate that you took the time and expense to attend that conference. I plan on going to one in the near future. I would LOVE to go to the conference in Vienna!!!!

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Terri Martin, Volunteer Mentor | @windwalker | May 23, 2019

In reply to @brigby "@sayaboleh @annya I have the afflo vest. I wear it while nebulizing my 7% saline and..." + (show)

@brigby Wow! I didn't know you had all of that going on in your sinuses. Good lord!!!

sayaboleh | @sayaboleh | May 23, 2019

In reply to @windwalker "@sayaboleh Thank you so much for that recap Mary. Gee, it doesn't sound like they are..." + (show)

@windwalker. Yes indeed. Vienna is a whole lot better than Grapevine TX I have to say (with apologies to our friends in TX) Unfortunately, my husband believes that my short jaunt to the conference has triggered my current afib. (unlikely) and contributed to my back injury. I forgot to include my imminent root canal to my list of non-MAC woes 🙁 When it rains….

Terri Martin, Volunteer Mentor | @windwalker | May 23, 2019

In reply to @sayaboleh "@windwalker. Yes indeed. Vienna is a whole lot better than Grapevine TX I have to say..." + (show)

@sayaboleh Awe…I am sorry to hear that you are having such a run of bummers.

heathert | @heathert | May 23, 2019

In reply to @jkiemen "@alleycat @pfists @windwalker I have been finding it hard to produce sputum all along. But my..." + (show)

@jkiemen I was in the same situation, I was changed to daily big 3 from 3x a week and put on Amikacin inhaled and it worked to get a clear sputum and bronch result.

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jengelage | @jengelage | May 23, 2019

May I ask how long you were on the big 3 before a clear sputum and did you have a special routine in taking the drugs to minimize their effects?? Thanks.

Jo Ann K | @jkiemen | May 24, 2019

In reply to @pfists "@jkiemen Jo Ann I'm so sorry that's not the news we wanted to hear from you...." + (show)

@pfists Thank you for praying for me. I do feel the mind-body connection plays a very heavy role for me. Saw ID yesterday. The Sensitivity testing is still not back, so more waiting.

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lorifilipek | @lorifilipek | Dec 4, 2019

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.

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?

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)

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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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 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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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)

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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