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trissi
@trissi

Posts: 8
Joined: Dec 02, 2017

Questions about treatment, alcohol and doctors in Phoenix

Posted by @trissi, Dec 27, 2017

Hi, I am new to the group. I have been to the ID doctor and was prescribed Rifampin at 300mg, Aziithromycin at 500mg, and Ethambutol, at 400mg. I have not started any of them since I was told by the doctor not to drink alcohol at all while taking them and I wanted to enjoy the holidays! There is no warning on any of the vials to avoid alcohol. What are you guys being told? Also, is it true that, for the most part, the oral meds are the only way to go. I am concerned about the side effects. Did any of you get a second opinion on the treatment? If so, can you recommend anyone in the Phoenix area? I was diagnosed with MAC only. Thanks for any input!

REPLY

Hi Trissi,
I moved your message to the MAC & Bronchiectasis where you’ll get more response to your MAC-specific questions. I completely understand that you have chosen to start taking the prescribed antibiotics for a few days to enjoy the holidays. Typically it is advised to not drink alcohol while taking any kind of antibiotic. See https://www.drugs.com/article/antibiotics-and-alcohol.html “In general, drinking any amount of alcohol while fighting an infection may not be wise, as it can lead to dehydration, interrupt normal sleep, and may hinder the body’s natural ability to heal itself. Also, some antibiotics have a specific — and sometimes very dangerous interaction — with alcohol.”
I’m tagging a few other members to weigh in @windwalker @tdrell @ling123 @heathert @lindam272 and @joan912

Trissi, you also asked about specialists in Arizona. Please see these discussions
– Physician recommendation – Arizona Mayo Clinic https://connect.mayoclinic.org/discussion/physician-recommendation-arizona-mayo-clinic/
– MAC & Bronchiectasis https://connect.mayoclinic.org/discussion/good-mai-diagnostictreatment-facilities/

You’ll also want to follow these discussions to learn more about managing side effects and getting a second opinion.
– Have to start the big three https://connect.mayoclinic.org/discussion/have-to-start-the-big-three/
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

When were you diagnosed with MAC?

@colleenyoung

Hi Trissi,
I moved your message to the MAC & Bronchiectasis where you’ll get more response to your MAC-specific questions. I completely understand that you have chosen to start taking the prescribed antibiotics for a few days to enjoy the holidays. Typically it is advised to not drink alcohol while taking any kind of antibiotic. See https://www.drugs.com/article/antibiotics-and-alcohol.html “In general, drinking any amount of alcohol while fighting an infection may not be wise, as it can lead to dehydration, interrupt normal sleep, and may hinder the body’s natural ability to heal itself. Also, some antibiotics have a specific — and sometimes very dangerous interaction — with alcohol.”
I’m tagging a few other members to weigh in @windwalker @tdrell @ling123 @heathert @lindam272 and @joan912

Trissi, you also asked about specialists in Arizona. Please see these discussions
– Physician recommendation – Arizona Mayo Clinic https://connect.mayoclinic.org/discussion/physician-recommendation-arizona-mayo-clinic/
– MAC & Bronchiectasis https://connect.mayoclinic.org/discussion/good-mai-diagnostictreatment-facilities/

You’ll also want to follow these discussions to learn more about managing side effects and getting a second opinion.
– Have to start the big three https://connect.mayoclinic.org/discussion/have-to-start-the-big-three/
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

When were you diagnosed with MAC?

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Hi, Colleen! Thank you so much for all of the resources! I feel like I am part of the group already! I was diagnosed in November. Back in April, my chest CT showed many lung nodules and I was first checked for lung cancer. Then the pulmonary doctor did a Bronchoscopy and it showed I had Pseudomonas Aeriginosa (sp?). I was on a pic line for 2 weeks and a follow up x ray showed it was gone. As the culture continued to develop, Micobacterium Avium Complex was finally diagnosed. I am thankful to have found this forum!.

@trissi , Hello Trissi, welcome to our forum. I am glad that you found us. As Colleen has stated, alcohol and antibiotics do not go well together. I was always told that alcohol can kill the antibiotic’s effectiveness. Another thing to consider is that the BIG 3 antibiotics can be hard on the liver, that is why they do routine liver function tests on you while taking them. You wouldn’t want to tax the liver further with alcohol added to the mix. You are lucky in that you live not too far from the Mayo Clinic there. Have you considered being seen there?

@trissi Trissi, I hope you will take the time to read over older posts, especially those by @katemn, she had lots of good info. Also, I recommend that you Google all that you can on the subject of avium bacterium and pseudomonas. Knowledge is power. Do you know if you also have a condition/disease called bronchiectasis? It commonly goes hand in hand with MAC infections. Feel free to ask questions or share your experiences.

Hi All. My name is Barbara and I was diagnosed with Mac and bronchiectasis in April. I have not started any treatment because unfortunately I am allergic to numerous antibiotics and have not had an antibiotic in 35 years. Currently my treatment includes mucinex and a medical device called a flutter which vibrates the bronchial tubes in an effort to loosen the congestion. A CT scan after six months indicated no change. I’m hoping it never gets any worse. Except for the coughing I don’t feel badly. The shortness of breath is predicated on my activity level. As much as I would like to treat this, I’m just not normal. Nice to know the group is available.

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the “big three” antibiotics because my pulmonary doctor didn’t think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I’ve not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the “big three” and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one’s conditions warrant them. Let’s hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the “big three” antibiotics because my pulmonary doctor didn’t think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I’ve not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the “big three” and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one’s conditions warrant them. Let’s hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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Thank you ling123 for your insights. Definitely helpful to know you’re not alone.

Liked by ling123

@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the “big three” antibiotics because my pulmonary doctor didn’t think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I’ve not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the “big three” and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one’s conditions warrant them. Let’s hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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@1065408 You are right, Barbara. I don’t share all the experiences with all the people on this site, but we are all here to support each other the best we can. Coming here to read everybody’s postings, even though I can’t relate to many situations that people describe, makes me feel that I’m not alone. And I would like to do my part to make other people feel the same.

@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the “big three” antibiotics because my pulmonary doctor didn’t think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I’ve not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the “big three” and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one’s conditions warrant them. Let’s hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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@ling123, Ling, you have been a wonderful contributor over the past year. I, for one, really appreciate it.

Liked by heathert, ling123

@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the “big three” antibiotics because my pulmonary doctor didn’t think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I’ve not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the “big three” and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one’s conditions warrant them. Let’s hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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Thank you. It’s so helpful and encouraging to me.@1065408

@1065408, Hello Barbara and welcome to our forum. There is a lot of information on older posts throughout our site if you want to take the time to look through them. when you click on the group, Bronchiectasis & MAC, you will see various topics listed. There is specific important info to be found there. Please check it out if you have not already. There is a website called http://www.ntminfo.org that has info on medications to treat MAC and new ones coming down the pike. They have a registry as well. I am signed in on it. It would be great if you would also, because the more people on it, the more it helps get funding from the gov’t and others for research. Numbers of those of us affected is what makes agencies stand up notice that we need help. I am glad that you found us, please feel free to ask questions or share your experiences. By the way, how did you find us?

@windwalker

@1065408, Hello Barbara and welcome to our forum. There is a lot of information on older posts throughout our site if you want to take the time to look through them. when you click on the group, Bronchiectasis & MAC, you will see various topics listed. There is specific important info to be found there. Please check it out if you have not already. There is a website called http://www.ntminfo.org that has info on medications to treat MAC and new ones coming down the pike. They have a registry as well. I am signed in on it. It would be great if you would also, because the more people on it, the more it helps get funding from the gov’t and others for research. Numbers of those of us affected is what makes agencies stand up notice that we need help. I am glad that you found us, please feel free to ask questions or share your experiences. By the way, how did you find us?

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Hi windwalker. Thanks for the website information and the suggestion of old posts. Definitely will check out both. Coincidentally I have subscribed to Mayo Clinic news on FB, and recently came across a segment on infectious diseases. Was delighted to navigate the system and get signed on. It’s really helpful. Don’t feel like the only one who so far has chosen to monitor rather than treat the condition.

@ling123

@1065408 Hi Barbara, I was diagnosed with bronchiectasis and MAC in October 2014 after coughing up a large amount of blood. I have opted not to take the “big three” antibiotics because my pulmonary doctor didn’t think my condition was bad enough to warrant the risk of damages to my other organs with long-term drug treatment. Just like you, other than coughing and excessive mucus, I feel very normal. And my chest X-rays do not show any worsening of my lung conditions. And I have no breathing problems either. So my decision is to diligently keep an eye on the conditions of my lungs. As long as they are stable, no drugs. In fact, I’ve not gotten any medical treatment and the last chest X-ray actually showed some improvement in my lungs. In this group, there are people who have been treated with the “big three” and others have not or have stopped taking them after a period of time. So it is not mandatory that everybody with bronchiectasis and MAC absolutely has to be on the 3 major antibiotics. It all depends on whether one’s conditions warrant them. Let’s hope your conditions will be stable for the foreseeable future so you can get on with your life without much concern.

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@windwalker Thank you for the compliments, Terri. But you and many others have done a whole lot more for everybody. Even though I do try my best, I can’t hold a candle to you guys.

@windwalker

@trissi , Hello Trissi, welcome to our forum. I am glad that you found us. As Colleen has stated, alcohol and antibiotics do not go well together. I was always told that alcohol can kill the antibiotic’s effectiveness. Another thing to consider is that the BIG 3 antibiotics can be hard on the liver, that is why they do routine liver function tests on you while taking them. You wouldn’t want to tax the liver further with alcohol added to the mix. You are lucky in that you live not too far from the Mayo Clinic there. Have you considered being seen there?

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Yes, just wish I could find someone to recommend a particular doctor there. I haven’t seen any listed for the Arizona facility.
Very glad to know you!

@windwalker

@trissi Trissi, I hope you will take the time to read over older posts, especially those by @katemn, she had lots of good info. Also, I recommend that you Google all that you can on the subject of avium bacterium and pseudomonas. Knowledge is power. Do you know if you also have a condition/disease called bronchiectasis? It commonly goes hand in hand with MAC infections. Feel free to ask questions or share your experiences.

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The infectious disease doctor says I do not have it. Although, the ID doctor I was referred to from the pulmonary doctor did not perform any tests on me. She is going by what the pulmonary doctor’s information was including the meds recommended. I looks to me, by the forum, that the oral meds are the only alternative.

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