1. < MAC & Bronchiectasis

Long-term Antibiotics for Bronchiectasis & MAC

Posted by pejohnston @pejohnston, Feb 26, 2018

Diagnosed w/Bronchiectasis in 2008, MAC in 2011 and have been on many medications since then. Under control for several years, but reinfected a couple of years ago while on antibiotics. My body became somewhat immune to some of meds I was on. I am now taking several more drugs that have pretty significant side affects. Fortunately, I've been okay with them. Anyone else been on antibiotics for this length of time?

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janovr | @janovr | Jun 30, 2018

Kate, I have recently moved to the Orlando area. I am very interested in your botanical suggestions .

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nick52 | @nick52 | Jul 2, 2018
In reply to @windwalker "@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name..." + (show)
@windwalker

@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name that you would like to use? To answer your question about long term antibiotics; you will see that many of our members are on a long term regimine. Most that are taking antibiotics are taking the 'Big 3' cocktail. People usually are on them anywhere from 18 months to 3 years. I am on a different kind of ongoing regimine. I have been taking alternating singular antibiotics on alternating months. I have been doing this since 2013. It is known as a prophylactic approach. My doctor explained that he liked this approach because it is more tolerable for the organs and prevents the mac from becoming resistant to the antibiotics.

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@adoniah sorry for a late response we were in Maine for the long weekend. I would say to you that you can get good result with natural products.  I could tell you to start by takeing something to clear your lungs with Clear Lungs the blue bottle but I prefer

to guide you by consulting a Natural Store product (Health and Wellness) and explain all your synptom and they will guide you.  You can call this number and ask for Sara  

http://Www.NaruraAlernatives.biz  847-697-0212 .  It is better to consult a specialist since you will be given what is necessary for your symptom.  I have never taken antibiotic for MAC only natural products and I am

now Asymptomatic. You can good result from it! Good luck! I will keep you in my prayers for you to be guided in the right path! Nick

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 11, 2018
In reply to @hmt1931 "I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day,..." + (show)
@hmt1931

I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day, (3 days), no weekends. Like clockwork,
I would expell it all about 2 hours later. My doctor told me to stick with the regimen. Was also on Prednisone for R/A. I got tired of vomiting and was losing weight. I made the decision to stop all the drugs. Am now taking 13 mg. of Prednisone a day and it keeps me comfortable. In addition. am taking 2mg. of Sulfasalazine twice a day for the rheumatoid arthritis. No vomiting and no arthritic pain I walk for 30 minutes each day & do moderate exercises, nothing strenuous. I am in my eighties, live alone, do my own cooking. When I feel good I tend to do too much, which causes painful flare-ups. I have to remember to take it easy & keep it simple.

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@hmt1931 Hi. How are you doing today? Thought that I would check in on you. I am doing good at the moment, although no energy and so much to do! Just wanted to let you know that I was thinking about you. -Terri

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 11, 2018
In reply to @hmt1931 "I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day,..." + (show)
@hmt1931

I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day, (3 days), no weekends. Like clockwork,
I would expell it all about 2 hours later. My doctor told me to stick with the regimen. Was also on Prednisone for R/A. I got tired of vomiting and was losing weight. I made the decision to stop all the drugs. Am now taking 13 mg. of Prednisone a day and it keeps me comfortable. In addition. am taking 2mg. of Sulfasalazine twice a day for the rheumatoid arthritis. No vomiting and no arthritic pain I walk for 30 minutes each day & do moderate exercises, nothing strenuous. I am in my eighties, live alone, do my own cooking. When I feel good I tend to do too much, which causes painful flare-ups. I have to remember to take it easy & keep it simple.

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@hmt1931 and @gatortail, Just want to say there are other treatment options out there that are less harsh on the body. I am very surprised that your dr put you on the Big 3 at your age. Many doctors won't. Depending on the susceptibility test that should have been done along with the testing of your sputem samples; You can be put on singular antibiotics that have few side effects and take only for ten days a month. For example: I was taking Cipro for 10 days one month, and then Doxycycline on the next month. I was on those alternating the months. Now I am on the Cipro for 10 months and tobramycin for 30 days on alternating months. I have no side effects from either and am in better shape now than I have been in 15 years. Plus, I do two nebulized treatments of 7% sodium chloride, which is just saline, but has proven to thwart off mac and keep your lungs clean. You may want to discuss these options with your physician.

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Flib | @flib | Jul 11, 2018
In reply to @hmt1931 "I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day,..." + (show)
@hmt1931

I was taking three drugs to combat this disease: Ethambutol, Riflaxin, and Cipro. every other day, (3 days), no weekends. Like clockwork,
I would expell it all about 2 hours later. My doctor told me to stick with the regimen. Was also on Prednisone for R/A. I got tired of vomiting and was losing weight. I made the decision to stop all the drugs. Am now taking 13 mg. of Prednisone a day and it keeps me comfortable. In addition. am taking 2mg. of Sulfasalazine twice a day for the rheumatoid arthritis. No vomiting and no arthritic pain I walk for 30 minutes each day & do moderate exercises, nothing strenuous. I am in my eighties, live alone, do my own cooking. When I feel good I tend to do too much, which causes painful flare-ups. I have to remember to take it easy & keep it simple.

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Terri, that is so true about celebrating the good days. One day a week ago, I felt like I was 20. I shopped in four stores, had a rare cup of coffee and donut and sat in a parking lot watching a lovely summer storm. I had forgotten how wonderful it is to feel well...so freeing and hopeful. Feel the opposite today but I do have a lovely memory.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2018
In reply to @auntnanny "windwalker I just wanted to report that I received a note from Dr Moua in Rochester..." + (show)
@auntnanny

windwalker I just wanted to report that I received a note from Dr Moua in Rochester in response to my recent culture. He says that there was 1 MAC noted but he did not feel it needed to be addressd at this time. I've been fortunate..... I have just shown minute amounts of MaC (so it seems to me). He went on to say that there was an abundance of pseudomos and that he is prescribing two weeks of Levaquin 500 mg. I have just finished 3 weeks of Cipro and am still coughing moderately. So..... going for a different med. Thought you might be interested that again, a Mayo doctor is holding back on the Big Three.

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@auntnanny, I hope that you can get the pseudomonass under control. Please keep us posted.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2018
In reply to @auntnanny "windwalker I just wanted to report that I received a note from Dr Moua in Rochester..." + (show)
@auntnanny

windwalker I just wanted to report that I received a note from Dr Moua in Rochester in response to my recent culture. He says that there was 1 MAC noted but he did not feel it needed to be addressd at this time. I've been fortunate..... I have just shown minute amounts of MaC (so it seems to me). He went on to say that there was an abundance of pseudomos and that he is prescribing two weeks of Levaquin 500 mg. I have just finished 3 weeks of Cipro and am still coughing moderately. So..... going for a different med. Thought you might be interested that again, a Mayo doctor is holding back on the Big Three.

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@autnanny, Hello Jan! Was thinking about you today. How are you feeling? Are you rid of the pseudomonas, or is it too early to tell?

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alleycatkate | @alleycatkate | Aug 15, 2018

@janovr hello. I just did see your post. I think it may have been directed towards me but not sure. Please do not forget to use the @ and the persons call name so that we are notified of your post. I am using oplopanax horridus. For some reason I am having difficulties accessing the mayo site on my computer and am left with only my iPhone which makes it difficult to share articles and research. I am trying to fix my computer issue. If you want more info we may need to do the old fashioned email. Hope you are navigating the waters and finding some of the answers that you are looking for. Kate

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america | @america | Aug 15, 2018

Does anyone live in Tampa Fl and know about any NTM meetings? Rita.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 15, 2018
In reply to @america "Does anyone live in Tampa Fl and know about any NTM meetings? Rita." + (show)
@america

Does anyone live in Tampa Fl and know about any NTM meetings? Rita.

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@america Rita, go to the http://www.ntminfo.org site and you should be able to find out if there is a support group in Tampa. I bet there is!

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