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?

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

Jennifer | @megan123 | Apr 25, 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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So much going on with your mom...u need to get tests results before anything, to see what&apos;s happening with your mom&apos;s abdomen.  They won&apos;t start MAC meds till they no what&apos;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&apos;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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Flib | @flib | Apr 25, 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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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.

REPLY
lauriefrancis | @lauriefrancis | Apr 25, 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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@megan123 Thanks so much. Especially for the names of the Toronto Drs. Can I private message you?

REPLY
lauriefrancis | @lauriefrancis | Apr 25, 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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@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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Jennifer | @megan123 | Apr 25, 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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Not sure..

Hopefully will go through

Jen

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 25, 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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Hi Jen and Laurie,
I removed your personal email addresses. Connect is a public site, so I don’t want you to get unwanted spam.
To private message:
1. Click on the name of the member you want to private message. This will take you to their profile.
2. Click the envelope icon.
3. Write your message and send.

REPLY
lauriefrancis | @lauriefrancis | Apr 25, 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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@colleenyoung thank you

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 26, 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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@lauriefrancis , Hi Laurie. I am sure you are feeling aggrevated while dealing with bureaucracy in the Canadian health care sysrem. You may want to look into traveling to the U.S. and bringing her to the Mayo Clinic. People worldwide come to their clinics because they are known for their Gold Standard care. They have an International relations office that can help you with insurance, etc. They work with you as far as payment goes if you have to pay out of pocket. They are a non-profit research hospital. If you want to send your mom down to the Jacksonville, Florida clinic, I'd be happy to meet her there and get her to her appointments, etc. Rochester, Minnesota may be closer for you. They have a clinic there, and also in Phoenix. Their websites are easy to get around in and find the International intake office. Let me know if you need or want help with that.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 26, 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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You're very welcome, Laurie. I'm glad that I was able to connect you with fellow Canadians.
While some information is better shared by private message, I would also like to remind everyone of the benefit of sharing in the forum. By posting in the discussions in the MAC group you benefit from the knowledge and experience of many. In fact it was by sharing in the group that I was able to connect you with other Canadians. That's the beauty of online communities like this one. 🙂

REPLY
lauriefrancis | @lauriefrancis | Apr 26, 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

@colleenyoung yes I do appreciate that very much. I will keep that in mind.

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