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.

@katemn

Carole, I would suggest that you go back and read all the posts from the beginning. I know I have learned a lot from this group. Perhaps you could also .. and find support. Stick with this thing. I have been negative since May 2013 .. and my Doctor at Mayo Clinic has me come back for a check up every 6 months to make sure I stay negative .. OR he catches it quickly if the MAI/MAC comes back.

I know I have never forgotten a story I read years ago in my 20's about a woman who ended up going to 17 doctors before she got an accurate diagnosis of her symptoms. That stuck with me in raising my children and regarding my own health. You know your own body. Trust your inner wisdom and do what you feel is best for your body! Sending you LOTS of positive energy and support! Katherine

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What do you do, this stuff is killing me, I'm trying so c hard, any help c or advice will help me, please, nothing c seems to work for c me.

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@katemn

Carole, I would suggest that you go back and read all the posts from the beginning. I know I have learned a lot from this group. Perhaps you could also .. and find support. Stick with this thing. I have been negative since May 2013 .. and my Doctor at Mayo Clinic has me come back for a check up every 6 months to make sure I stay negative .. OR he catches it quickly if the MAI/MAC comes back.

I know I have never forgotten a story I read years ago in my 20's about a woman who ended up going to 17 doctors before she got an accurate diagnosis of her symptoms. That stuck with me in raising my children and regarding my own health. You know your own body. Trust your inner wisdom and do what you feel is best for your body! Sending you LOTS of positive energy and support! Katherine

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We are all different in this journey, yet we are all the same. Can you be more specific - I haven't

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@katemn

Carole, I would suggest that you go back and read all the posts from the beginning. I know I have learned a lot from this group. Perhaps you could also .. and find support. Stick with this thing. I have been negative since May 2013 .. and my Doctor at Mayo Clinic has me come back for a check up every 6 months to make sure I stay negative .. OR he catches it quickly if the MAI/MAC comes back.

I know I have never forgotten a story I read years ago in my 20's about a woman who ended up going to 17 doctors before she got an accurate diagnosis of her symptoms. That stuck with me in raising my children and regarding my own health. You know your own body. Trust your inner wisdom and do what you feel is best for your body! Sending you LOTS of positive energy and support! Katherine

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Sorry about that being sent without my finishing. I haven't been on the forum lately for a number of reasons, but I will be glad to help in any way.

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@pal131

I have been diagnosed with MAC and also brochiectusis from a pulmonologist at Mayo Clinic in Jacksonville FL after going to several internal medical Drs. who really never mentioned either of these diseases. They always did a chest xray and usually gave me a prescription for some type of antibiotics. When that didn't work they would try another one.
Dr. Leventhal said that it can only be seen with a CT scan and that it usually only affects thin white women.
MAC stands for mycobacterium avian, he indicated that it was spread through bird droppings that filtrate into the ground then into our water supply.
I have many of the symtoms others on this blog have explained. I usually feel quite well but get spirts of feeling rundown, no energy. After talking in a loud restaurant my voice is completely gone because of exertion. I also get sick when I travel, I assume because of the stress and change of my regular scedule.
I am very interested in this blog and comments from others suffering with these.

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Hi! Thank you for your reply.sounds like my doctors are some quacks don't it?lol maybe that why I don't get better.ive been dealing with this since 2011, it pretty much got me bedridden now but on c oxygen, loosing weight so bad.i was on alot of antibiotics but no probotic so now c my stomach really ripped up.im c on nothing right now,so it's like no treatment,what antibiotics were you on that helped you overtake it? All your output helps me, god bless you.much love...

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@greenest1

Hi, I was only able to take the cocktail for MAC for 9 to 10 mos. and suffered with GI and skin problems too severe so we had to stop. My vision was not affected however, my hearing was and though I've been off the meds for two years now, my hearing did not improve. It seems the time I spent on these antibiotics helped a great bit. I am due for a CT in a month or two and we'll see then how things look for me. I belong to a Mac group on FB that is private. We have nearly 90 members if you are interested. It is a Mac lung disease group and you could request to join if so interested. Nice bunch of folks on there. Good luck to you, John. 🙂

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Hi John! Was wondering how to get on the Facebook group, need the feedback so bad with this Mac, god bless you..

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@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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Hi Irene! Just wondering how your doing? You sound like me so much with this Mac stuff.where it come from! I'm now like you eighty some pounds,oxygen, sick, been fighting this since 2011, have you gotten any answers? God bless you.

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@skinny

I am a 79 year old retired psychiatrist. I was diagnosed with MAC in 4/15 as part of the workup post pulmonary hemorrhage. I had already lost 35# from my baseline 170#. I was started on the Rifampin, Azithromycin, and Ethambutol. After a few weeks, my appetite and energy were worse. I was continuing to loose weight. I called my doc pointing out that he wanted me to gain weight, and I was so nauseated I couldn't eat. He advised me to stop the Rifampin and call him back if 5 days. Voila!!! The nausea was almost gone, and I started to eat more. I am now back to my baseline of 170#. My sputum cultures tuned negative in 2/16, so I am scheduled to stop the meds in March of 17. Please reconsider your plans. Talk to your docs about a different medication plan I think that I would have ended up like you if my doc had not been willing to try stopping the Rifampin. My wife, a retired nurse, also credits starting a Pobiotic with improving my appetite. From my 79.5 year perspective, you are still young. Your death will matter to those people who are important to you.

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Hi! Was wondering what probotic are best? God bless you!

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@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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Thank you for asking. Unfortunately, I am not doing very well and have dropped into the 70's which is very concerning. I am thankful for each day. We moved back to Connecticut to be with our many children and even more grandbabies. As Dorothy said, "There's no place like home!" I feel I know a whole lot about MAC, but getting better doesn't seem to be within reach at this point. For those of us who can maintain a healthy weight, I think the prognosis is better. God bless you real good too!

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@skinny

I am a 79 year old retired psychiatrist. I was diagnosed with MAC in 4/15 as part of the workup post pulmonary hemorrhage. I had already lost 35# from my baseline 170#. I was started on the Rifampin, Azithromycin, and Ethambutol. After a few weeks, my appetite and energy were worse. I was continuing to loose weight. I called my doc pointing out that he wanted me to gain weight, and I was so nauseated I couldn't eat. He advised me to stop the Rifampin and call him back if 5 days. Voila!!! The nausea was almost gone, and I started to eat more. I am now back to my baseline of 170#. My sputum cultures tuned negative in 2/16, so I am scheduled to stop the meds in March of 17. Please reconsider your plans. Talk to your docs about a different medication plan I think that I would have ended up like you if my doc had not been willing to try stopping the Rifampin. My wife, a retired nurse, also credits starting a Pobiotic with improving my appetite. From my 79.5 year perspective, you are still young. Your death will matter to those people who are important to you.

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VSL3. You can get at Costco or SAMs. It is refrigerated so go to the pharmacy .
$48.00 for 60 capsules. I do not take any meds for NTM . Tried twice. Ended up in the hospital twice. Literally destroyed my gut! I have been off meds since Sept. , 2015. I have gained much needed 17 lbs. I am 81, go to lung rehab twice a week. It is AWESOME! O2 now in mid 90s and no oxygen. Exercise is key! I have not been on in months.
So very sad to learn our mentor Katherine has passed. What a precious soul is now in heaven!
Jan/GA

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@skinny

I am a 79 year old retired psychiatrist. I was diagnosed with MAC in 4/15 as part of the workup post pulmonary hemorrhage. I had already lost 35# from my baseline 170#. I was started on the Rifampin, Azithromycin, and Ethambutol. After a few weeks, my appetite and energy were worse. I was continuing to loose weight. I called my doc pointing out that he wanted me to gain weight, and I was so nauseated I couldn't eat. He advised me to stop the Rifampin and call him back if 5 days. Voila!!! The nausea was almost gone, and I started to eat more. I am now back to my baseline of 170#. My sputum cultures tuned negative in 2/16, so I am scheduled to stop the meds in March of 17. Please reconsider your plans. Talk to your docs about a different medication plan I think that I would have ended up like you if my doc had not been willing to try stopping the Rifampin. My wife, a retired nurse, also credits starting a Pobiotic with improving my appetite. From my 79.5 year perspective, you are still young. Your death will matter to those people who are important to you.

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Thank you so much for the information,im certainly going to try it!that's wonderful your better, praise the Lord, I got to keep trying.my butt is so bone to bone I can hardly sit on it, I'm getting sores which really hurt, so sad about Katherine, I thought she was doing better, goody goody for you thou! God bless you! Much love!!

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