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?

@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 energy level varies. I have days when I own the world and days when I can barely get dressed. And days when it's a combination of both. Already a slim person I have lost about 25 lbs and don't seem able to gain weight. I've always had a light appetite. and not much of a cook. Thanks for telling me about the saline used in France. I use it twice a day. Sometimes it is difficult, makes me cough a lot and then feel exhausted. But I'm not complaining; whatever it takes to have the good days.

Liked by Brenda R.

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@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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lauriefrancis, I'm glad to hear you've booked respirologist appt. in June. My Toronto doc successfully gave me treatment for MAC. It is true doc's don't know much about Mac, but I recommend find out if respirology doctors are qualified equally in bronchiectasis inclusive. I trust they also will get to the bottom of her bloated and painful stomach. It is possible she may have hernia. Best of care.

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@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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May I ask what you took for your treatment?

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@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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The weight thing is a tough one. Many people don’t understand. We never would think to say” Oh my gosh you are so fat!” But people think nothing of saying “ What’s wrong with you? Don’t you eat? Are you anorexic?” I always reply with a smile and say “That’s how the good God put me together!” I should reply with something less kind, but it’s not in my nature to embarrass someone back. People should not prejudge someone without knowing the “rest of the story.”The ID doctors hope to get me up to 100 pounds by taking an appetite stimulant and using marijuana. Since I’m not a party gal I haven’t even tried the latter. Anyway what made sense was the doctor telling me to force myself to eat more so that my stomach would get bigger. When you don’t eat your stomach shrinks which keeps the cycle of not eating going. With ten children plus teaching, I spent the better part of my life eating off of people’s plates. It may not have been the best, but it was easy, and I ate plenty. Good luck to you! The ID doctor tells me that if my nutrition improved the MAC would not be happy and might take up residency elsewhere. I am not sure about that as there are way more contributory factors. But I am trying to eliminate one!

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@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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@lauriefrancis Does your mom has “irritable bowel syndrom” for her bloating? Check the symptoms on the internet. You can also find good info in Dr Balch book “Nutritional healing “. Did she ever had her gallbladder removed? 

 I live in New Brunswick Canada. Also a snowbird and I live in Largo Florida for 5 months and a half.  Good luck with your mom! Nick

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@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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@lauriefrancis there is a good infectiologist in Rivière du Loup Qb Dr Harvey!  He treat many patients with the MAC.  When I had a MAC it was diagnosed by a broncoscopy lab test. 

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@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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@lauriefrancis Has your mom seen a doctor to check the condition of her ovaries for the symptoms of bloating and painful stomach?

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@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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@ling123 she had a hysterectomy. Maybe the ovaries are still there. She's had xray and ultrasound.

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@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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@nick52 she has diverticulousis and yes her gallbladder removed 7 yrs ago. After surgery the surgeon said it probably wasn't her gallbladder causing her problems.
We were wondering if the bloating was related to the Mac infection. From what you are all sharing it doesn't seem to be part of the usual symptoms. @windwalker888 am I right?
Thanks everyone!

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@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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@lauriefrancis OK. Diverticulosis explains the symptoms of bloating and stomach pain. I don't belie these symptoms have anything to do with MAC, at least not directly.

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@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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So much going on with your mom…u need to get tests results before anything, to see what's happening with your mom's abdomen.  They won't start MAC meds till they no what's going on….when all results are in, then they will treat if necessary.  I live

in Toronto and see Dr Brode, and Dr Theodore Mathias at Toronto Western.  These are the best you can get….There is a new philosophy with regards to MAC, and giving the big 3 Antibiotics are given only when you begin to slowly deteriorate.  I started 3 weeks

ago, but I knew it was time…side effects are minimal at this point.  Take one step at a time, starting with CT scan results.  You need to know what's going on in her abdomen first…CT will hopefully help you…if you want a second opinion, it takes 4-5

months to see these Drs…hope this help you✌️

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@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

I get that too. "Girl, why don't you eat more." I ask if they would like to make a fat exchange. Let['s them know I'm not deliberately staying thin. It seems no matter how much I eat I can only gain a pound or two and then not sustain it.

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@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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@megan123 Thanks so much. Especially for the names of the Toronto Drs. Can I private message you?

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@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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@megan123 Thanks so much. Especially for the Drs names. Can I message you privately? I don't really know where to gind that feature on here. But someone sent me a private message. I just don't know how.

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@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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Not sure..

Hopefully will go through

Jen

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