How to stay healthy with Bronchiectasis

Posted by janeb @janeb, Dec 17, 2019

Dear Friends,
I was diagnosed with the big B four years ago. I have been very fortunate and have what my Pulmanologis calls "flare ups" only occasionally...a week of antibotics puts things back in order. I am not sure what brings the flare ups on. Our home is hepa filtered throughout and when the forest fires come in the late summer I stay inside. I'm wondering whether you all use care to avoid certain environments or circumstances. Can you give me some advise regarding what to avoid? Thank you all in advance for any thoughtful advise.
Jane

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

@jenniferhunter

@alleycatkate There is a lot of literature about how NAC can help, but what is missing is literature that describes any adverse effects of an overdose of NAC. What I would recommend for anyone who is taking NAC is to keep track of any changes in symptoms, and stop or consult a doctor immediately if there is an adverse effect. At one time, I read some literature that suggested that an overdose of NAC could have the opposite effect and cause an increase in oxidative stress by causing an alternate biochemical reaction loop. I've been looking, but not finding related literature.

It is from my own experience that I make these suggestions and I have allergic asthma. I did take the same dose that was mentioned in the links from this post NAC 600 mg twice a day, and after a few weeks I did experience my lung function improve and the phlegm was easy to clear, but a few weeks after, I developed thirst that increased every day and became excessive. I wasn't able to tolerate eating protein foods like meat because it increased my thirst. Proteins are made of connected amino acids which digestion breaks down, and NAC also is an amino acid. I stopped taking NAC on the 5th day of the thirst. I was drinking a lot of water around the clock, but couldn't quench the thirst and had to get up several times at night. I called Poison Control and asked about overdoses of NAC, but they didn't have any advice to offer. The next day, there was slight improvement in my thirst, and it actually took 5 days to resolve which was the same amount of time it took to get to that extreme. In all fairness, I was also taking a supplement that was made from cruciferous vegetables which also helps the body detox. It may have been an effect caused by the combination of these. The detox supplement said not to take it if you have gallstones, and what also happened is that the normal amount of bile (which is stored in the gall bladder) was decreased in my intestines. Bile is what colors the end products of digestion, and without it, it is colorless. That symptom is an alarm that something might be blocking a bile duct (which could have been inflammation or gall stones). Everything returned to normal within a few days of stopping the supplement and the NAC. I did see my doctor and had an ultrasound of the bile duct and nothing was wrong. I discussed all of this, but there was no explanation as to why this happened.

Since then I have taken NAC infrequently, but no more than 600mg per day, and not every day. I don't want to do this experiment again. I think there are a lot of unknowns even among health care profressionals about what happens when too much a good thing is too much. There are a lot of benefits of NAC and it is a precursor to glutathione which is a master antioxidant in the body, so it's not a bad thing, but pay attention when you try any protocol for adverse effects. Overdoses of vitamins can be toxic too, and I just wanted to share the information in case someone else has the same experience.

This literature does describe an overdose of NAC that was fatal, but it happened as a medication error in using NAC to treat a patient after acetaminophen poisoning.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4354467/

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@jenniferhunter Hi Jennifer, Thanks for your response on NAC.  It was suggested to me to supplement with NAC by my primary Dr. for lung health. I have taken as suggested for several years with no problems, only positive results. That said,  I should probably never suggest anything without the caveat of checking with your Dr. first and checking the internet for negative responses. Thought well tolerated by most with a typical dosage, there are some reactions to note... I certainly hope it was not the NAC that made an issue for you. I checked and do see that it should be watched if you have asthma.  Perhaps as you suggest, the combo of the detoxing medication and the NAC may have been the problem. ?? It does seem that your resultant problem with bile and a detoxing supplement warning you not to take with gall bladder issues (related to bile) could indicate the detox product might be at fault. Possibly as you suggest, the combo of the two together could have been the problem.... I am sorry that you had a problem and am sure that it was alarming to you.  We should always be mindful when starting a new regime to be alert for any negative responses as you suggest. And in the future, I will certainly use more caution in any suggestions made....thank you. Even though we all have a disease in common our bodies are all quite different. I am sorry if the NAC had anything to do with your response as I am sure that was concerning and stressful for you. Happy to hear that you are feeling better. Thanks for your heads up on this. 
Best,  Kate

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@alleycatkate

@jenniferhunter Hi Jennifer, Thanks for your response on NAC.  It was suggested to me to supplement with NAC by my primary Dr. for lung health. I have taken as suggested for several years with no problems, only positive results. That said,  I should probably never suggest anything without the caveat of checking with your Dr. first and checking the internet for negative responses. Thought well tolerated by most with a typical dosage, there are some reactions to note... I certainly hope it was not the NAC that made an issue for you. I checked and do see that it should be watched if you have asthma.  Perhaps as you suggest, the combo of the detoxing medication and the NAC may have been the problem. ?? It does seem that your resultant problem with bile and a detoxing supplement warning you not to take with gall bladder issues (related to bile) could indicate the detox product might be at fault. Possibly as you suggest, the combo of the two together could have been the problem.... I am sorry that you had a problem and am sure that it was alarming to you.  We should always be mindful when starting a new regime to be alert for any negative responses as you suggest. And in the future, I will certainly use more caution in any suggestions made....thank you. Even though we all have a disease in common our bodies are all quite different. I am sorry if the NAC had anything to do with your response as I am sure that was concerning and stressful for you. Happy to hear that you are feeling better. Thanks for your heads up on this. 
Best,  Kate

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@alleycatkate That was a few years ago, and I was concerned of course. Thanks for your response. I liked your post and thought it was very informative, so no apology is necessary. I also try to be careful on how I word things and always present information and to leave a choice to the patient. I do explain how something can benefit, but also how something can be overlooked or missed, or even have a negative or unintended consequence, and I leave the medical decisions to the medically trained professionals. No one knows everything, and even doctors miss things, so as patients, we need to be vigilant about our health and question things if something doesn't seem right, but some times with questions, there are no answers. I just think that by sharing information, we all learn. NAC certainly has a lot of good benefits and there is a lot of literature backing that up. Thanks again.

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@jenniferhunter

@alleycatkate That was a few years ago, and I was concerned of course. Thanks for your response. I liked your post and thought it was very informative, so no apology is necessary. I also try to be careful on how I word things and always present information and to leave a choice to the patient. I do explain how something can benefit, but also how something can be overlooked or missed, or even have a negative or unintended consequence, and I leave the medical decisions to the medically trained professionals. No one knows everything, and even doctors miss things, so as patients, we need to be vigilant about our health and question things if something doesn't seem right, but some times with questions, there are no answers. I just think that by sharing information, we all learn. NAC certainly has a lot of good benefits and there is a lot of literature backing that up. Thanks again.

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@jenniferhunter ...Thanks, Jennifer. You are so right about being careful in advising others. And we all do need to proceed with caution when it comes to our health.

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@alleycatkate

@jenniferhunter Hi Jennifer, Thanks for your response on NAC.  It was suggested to me to supplement with NAC by my primary Dr. for lung health. I have taken as suggested for several years with no problems, only positive results. That said,  I should probably never suggest anything without the caveat of checking with your Dr. first and checking the internet for negative responses. Thought well tolerated by most with a typical dosage, there are some reactions to note... I certainly hope it was not the NAC that made an issue for you. I checked and do see that it should be watched if you have asthma.  Perhaps as you suggest, the combo of the detoxing medication and the NAC may have been the problem. ?? It does seem that your resultant problem with bile and a detoxing supplement warning you not to take with gall bladder issues (related to bile) could indicate the detox product might be at fault. Possibly as you suggest, the combo of the two together could have been the problem.... I am sorry that you had a problem and am sure that it was alarming to you.  We should always be mindful when starting a new regime to be alert for any negative responses as you suggest. And in the future, I will certainly use more caution in any suggestions made....thank you. Even though we all have a disease in common our bodies are all quite different. I am sorry if the NAC had anything to do with your response as I am sure that was concerning and stressful for you. Happy to hear that you are feeling better. Thanks for your heads up on this. 
Best,  Kate

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@alleycatkate I think we should tell others what we do, and works for us, and then they should investigate it for themselves. We are all very keen to help others which is fantastic, I have seen so many great ideas on here that have been a big help to me. Thanks Heather

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@heatherf Heather...I have found so many great suggestions on this site but always do a little research before implementing. I guess I just assumed that everyone did that but I will be mindful in the future to suggest investigation. Yah...this site would not work well if folks did not chime in with what works for them. What a superior group of people...all so helpful and kind!! Happy Holidays, Heather. Love, Kate

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I’m religious about keeping my hands away from my face and washing my hands frequently throughout the day. I also regularly use antibacterial wipes which I keep in my car. I try to nebulize 3% saline twice a day. So far, so good!

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@esssbeee

I’m religious about keeping my hands away from my face and washing my hands frequently throughout the day. I also regularly use antibacterial wipes which I keep in my car. I try to nebulize 3% saline twice a day. So far, so good!

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🙂

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@alleycatkate Kate you are a wonderful member of this site with lots of great info! Happy holidays to you to Kate. Love Heather

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Hello all
My wife had been diagnosed with MAC disease in her lungs. Had been treated with the well known 3 different types of antibiotics for 2 years and was feeling well during this period. We stopped for 2 months and the results of the bronchocopy shows MAC again. Doctors restarted again the antibiotics with a possibility for surgery. Anyone aware of the best center for such a surgery? We are living in Dubai, UAE. Many thanks

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@nnassiri

Hello all
My wife had been diagnosed with MAC disease in her lungs. Had been treated with the well known 3 different types of antibiotics for 2 years and was feeling well during this period. We stopped for 2 months and the results of the bronchocopy shows MAC again. Doctors restarted again the antibiotics with a possibility for surgery. Anyone aware of the best center for such a surgery? We are living in Dubai, UAE. Many thanks

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Welcome back, @nnassiri. It's been a while since you posted last. I'm sorry to hear that your wife's MAC has returned after 2 years of feeling better. Not many members have had surgery for MAC. You'll be interested to read this discussion where @jenblalock shares her experience with considering surgery.

- Question regarding lung surgery https://connect.mayoclinic.org/discussion/question-regarding-lung-surgery-240dd3/

You might also be interested in these discussions that @windwalker initiated:

- You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
- Possible causes of MAC/MAI Re-Infections https://connect.mayoclinic.org/discussion/possible-causes-of-macmai-re-infections/How To - - Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/

Nnassiri, can you tell us more about what you were told about surgery and treatment options?

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