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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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 24, 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 there. You actually sound like you are doing quite well to be in your 80's, dealing with mac and still living on your own and....cooking! I am only 59 yrs old and have zero energy after 3:00. There is no cooking being done by this mermaid. Sorry, that is an inside joke with my cousin who always says "Mermaids don't cook." I too tend to over-do it on days that I feel good. I think that is typical. My husband and my friends fuss at me every time that I do it. I totally get it get as to why we tend to do that. It is almost like we are celebrating the good days. Right?

REPLY
hmt1931 | @hmt1931 | Jun 25, 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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Yes

REPLY
auntnanny | @auntnanny | Jun 28, 2018

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.

REPLY
4 replies
gatortail | @gatortail | Jun 28, 2018

I have been thru 2 different year and a half sessions with 2 different antibiotics. Each time they knocked it into remission but now I have found I need 3 at the same time and doctor says my body cannot take it so have no treatment. Had no idea that it made me tired in afternoon and sometimes depressed. Thought it was just old age. I am 82. Anyone else in the Orlando area?

REPLY
1 reply
adoniah | @adoniah | Jun 28, 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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My VA doctors dropped me from treatment because I lost so much weight they said I was trying to starve myself to death! But then the pulmonary doctor took me off of the antibiotics and I was able to metabolize food again. How ever now he will not treat me at all. He said I am cured after 4 months of treatment. I am not...It is getting worse and I do not know what to do.

REPLY
nick52 | @nick52 | Jun 28, 2018
In reply to @gatortail "I have been thru 2 different year and a half sessions with 2 different antibiotics. Each..." + (show)
@gatortail

I have been thru 2 different year and a half sessions with 2 different antibiotics. Each time they knocked it into remission but now I have found I need 3 at the same time and doctor says my body cannot take it so have no treatment. Had no idea that it made me tired in afternoon and sometimes depressed. Thought it was just old age. I am 82. Anyone else in the Orlando area?

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@gatortail. I live in Largo near Clearwater from December to May only!  The other six months I live in Canada. Nick

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alleycatkate | @alleycatkate | Jun 28, 2018

@gatortail ...Hello. I am not in Orlando but somewhat near (Vero Beach). I am sorry to hear that you are having such a rough time with your antibiotics and that now you do not have any treatment at all. I am asymptomatic but am taking herbs that a fellow MAC person on this site has suggested. They are antibiotic botanicals. I do not know if you would have interest in trying them but I could put her in touch with you, if you would like....or I could try to explain them to you. She is the one with the good results, though. I am also taking colloidal silver orally which several folks on this site take. Some of these remedies seem to have worked for some ladies but there is no science on them. I just believe more in a gentler and non pharmaceutical approach and I believe in nature's cure before cooked up drugs. I have a lot of faith in these old fashioned remedies and would use them before anything else....especially the big 3. Please let me know as it seems you have hit a brick wall with any therapy and your Doctor says no more. And yes, I think we all suffer from fatigue. Also, you are coping with an awful lot so I would imagine depression would be almost a given. I hope that you will be feeling better and we are all here to help if we can. I have picked up so much information on this site to go forward with...and the support and kindness here are over the top! My Best wishes to you...Kate

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 29, 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.

Jump to this post

@auntnanny Jan, I hope the Levaquin does the trick for you.

REPLY
egayle187 | @egayle187 | Jun 29, 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.

Jump to this post

@adoniah...We're all glad you found the group. many of us have similar troubles with doctors. Don't get discouraged. There are many alternative treatments. Please read the previous posts for many suggestions.It would help us help you if we know whether your doctors are basing "no more treatment" on sputum samples, bronchoscopies, CT scans, susceptibility studies, or just "we don't know what else to do".
When my Infectious disease doctor said, "we don't treat candida", when both of my lungs were completely full of it, I turned to the internet and Candida Cleanse. Next bronchoscopy showed it worked.
Don't get discouraged. The site has many caring people who will help you.

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