1. < MAC & Bronchiectasis

Questions about treatment, alcohol and doctors in Phoenix

Posted by trissi @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!

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

ling123 | @ling123 | Jan 17, 2018
In reply to @windwalker "@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't..." + (show)
@windwalker

@jenblalock, I would give anything if my daughter would move to where I live. I shouldn't move her way due to the fact that I get sick often in Virginia, could be the climate, but I suspect higher organism count; mold etc. How old are your grandkids? Sounds like you are headed for bliss!

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@tdrell I'm not single. But my husband and I took too long to finish school and establish our careers to have a family before I passed the age where I'd feel adequately equipped to start a family. But I always feel that family is a much broader concept than the direct bloodline. I'm still feeling very blessed everyday that I have a close knit family that I love immensely. My husband feels the same way with his two nieces and two nephews.

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trissi | @trissi | Jan 17, 2018

I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me that my condition is not dire enough to start taking the antibiotics. I had already been told by my previous pulmonary doctor and an Infectious disease doctor that I needed to start them. But my symptoms at this time are very minimal. He will have me come in once a year for a CT Scan. He agrees that the strong antibiotics with their side effects are not worth dealing with at this time. I am thrilled in the meantime!

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4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 17, 2018
In reply to @trissi "I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me..." + (show)
@trissi

I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me that my condition is not dire enough to start taking the antibiotics. I had already been told by my previous pulmonary doctor and an Infectious disease doctor that I needed to start them. But my symptoms at this time are very minimal. He will have me come in once a year for a CT Scan. He agrees that the strong antibiotics with their side effects are not worth dealing with at this time. I am thrilled in the meantime!

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Hi @trissi
I moved your message from the Infectious Disease group to the MAC group in the discussion you first started about looking for recommendations for specialists in Phoenix. I'm so glad you found the care you are looking for. I'm sure others would like to know more about the care experience you had and which doctor you saw at Mayo Clinic Arizona. A few other members had questions about Mayo Clinic Arizona.

I, too, am thrilled that you don't need the antibiotics at this time and that you will be monitored by a specialist.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 17, 2018
In reply to @trissi "I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me..." + (show)
@trissi

I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me that my condition is not dire enough to start taking the antibiotics. I had already been told by my previous pulmonary doctor and an Infectious disease doctor that I needed to start them. But my symptoms at this time are very minimal. He will have me come in once a year for a CT Scan. He agrees that the strong antibiotics with their side effects are not worth dealing with at this time. I am thrilled in the meantime!

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@trissi , That is great news Trissi, lets hope you never need to take them!

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Barb | @1065408 | Jan 19, 2018
In reply to @trissi "I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me..." + (show)
@trissi

I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me that my condition is not dire enough to start taking the antibiotics. I had already been told by my previous pulmonary doctor and an Infectious disease doctor that I needed to start them. But my symptoms at this time are very minimal. He will have me come in once a year for a CT Scan. He agrees that the strong antibiotics with their side effects are not worth dealing with at this time. I am thrilled in the meantime!

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Question. Has anyone used acupuncture lung treatment in an effort to control bronchiectasis and mac?

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trissi | @trissi | Feb 6, 2018
In reply to @trissi "I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me..." + (show)
@trissi

I saw a Pulmonary doctor today at the Phoenix Arizona Mayo Clinic. He agreed with me that my condition is not dire enough to start taking the antibiotics. I had already been told by my previous pulmonary doctor and an Infectious disease doctor that I needed to start them. But my symptoms at this time are very minimal. He will have me come in once a year for a CT Scan. He agrees that the strong antibiotics with their side effects are not worth dealing with at this time. I am thrilled in the meantime!

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Hi, Colleen! Sorry I am just now replying! I saw Dr. Kenneth Sakata at Mayo. He is in Pulmonary. I brought all of my records pertaining to my lung issues since April 2017. He is fairly new at the Phoenix Mayo. He came from the Rochester facility. Very nice man spending all the time I needed and asking if I had any more questions before I left. He did suggest that I should go to one of Mayo's Infectious Disease specialists if and when I need to start any treatment. Otherwise, as I said above, he will order a CT scan of the lungs once a year to keep things in check.

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