1. < MAC & Bronchiectasis

mycobacteria

Posted by loyd1230 @loyd1230, Oct 12, 2011

This is a lung condition my wife apparently caught in Nevada. It is like tuberculosis but is not contagious. It has flair ups and causes coughs and shortness of breath,and can be life threatening. Anyone know anything about this disease.

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

myerskaren | @myerskaren | Sep 25, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

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I'm so sorry to hear your not doing so well, this stuff is a real   struggle.my weight is in the 80s so I can know how you feel, I got bone to bone on my butt, it c hurts to sit, sores, you got any suggestions for them? At least we know the Lord's arms are open for us, I'm praying for you, I feel I'm right beside you,much love to you!!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 25, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

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@irene5 , Hi Irene. I didn't know that you had lost that much weight, I know that is VERY disconcerting to you you. Do you have any kind of 'active' infection going on right now? Do you know what kind of MAC you have? I am going to private message you my phone number. I'd like to talk to you about your treatment if you don't mind. I want to compare notes with you. I feel for you in the struggle to fight this. Hugs, Terri

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 25, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

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@myerskaren , Karen, have you had a fairly recent sputem test to see if you have any active infections going on? What year were you diagnosed with MAC? Did you do the BIG 3 for treatment?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 26, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

Jump to this post

@myerskaren, Hi Karen. I have read back through all of your posts. I am so glad that you found this forum. Each and every member on this site has my heart when they are not feeling good. I am concerned about you not being on any kind of treatment what so ever, and also concerned that you may not be seeing a GOOD doctor. What state do you live in? It sounds like you are in need of good care.

REPLY
irene5 Irene Estes | @irene5 | Oct 16, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

Jump to this post

Hi Terri. I am in a very bad way. How do you do a private message? Sorry I haven't gotten back to you. Too many bumps in the road. Trying very hard to stay positive. 🙂 Thank you.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 5, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

Jump to this post

Hi @irene5
I'm just seeing this message now. How are you doing?

PS: See "How to Send a Private Message" on this page: https://connect.mayoclinic.org/get-started-on-connect/

REPLY
irene5 Irene Estes | @irene5 | Nov 8, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

Jump to this post

Thank you Colleen. Much appreciated.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 9, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

Jump to this post

@irene5 , Irene, so sorry! I am just now seeing this post. I do not know how it got missed! You can tap on my @name with your mouse and it will bring up my profile with my picture. Beside the picture it says 'private email" click on that. I KNEW you weren't doing well and have wanted to talk to you. I will send my phone number privately. Please call me.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

Jump to this post

@irene5 , Irene, did you get the pm I sent you?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 2017
In reply to @irene5 "I am a 67 year old woman who was diagnosed almost a year ago with MAC..." + (show)
@irene5

I am a 67 year old woman who was diagnosed almost a year ago with MAC through a bronchoscopy. I started not feeling well in 2014 and decided to retire from teaching after having taught since 1971. This was a difficult decision and when I started losing weight my doctor thought maybe I was depressed about retiring. My body aches and flu like symptoms were attributed to fibromyalgia even though I don't think I have the trigger points. I also was losing all my teeth and had to have implants. I am not normally a depressed person. Thankfully my son in law who is a Gyno sent me for a CT scan which showed the MAC, and consequent bronchoscopy confirmed it. I have been to infectious disease doctors at UMASS and here in Tennessee where we recently moved. I started on the treatment which just about killed me, so I stopped. I have no quality of life. I weigh barely 80 pounds as I have no appetite. I have ten children and eleven grand babies, and all I want is to feel better so I can "live." I don't know where or how I got this. One of my children swears it was the dentist office. A friend wonders about all the trips to China and having two children who were treated for TB because of Bcg. I guess it really doesn't matter. I am sick everyday, but am also grateful I have gotten this far. My mom and aunt died of lung cancer. None of us smoked. Personally, I think it's all genetically linked. Thank you for giving me a place to vent. My husband of almost 50 years has sarcoidosis! Irene

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@irene5, I am posting my number here in case you are having trouble with your pm inbox. Terri at 520-471-0087 please call me any time. I desperartely want to talk to you.

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