(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@boomerexpert

FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

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@boomerexpert. Thanks for sharing. I also received this email, but didn’t get a chance to try to share it. I did contact David and received a response that said they “had an overwhelming response” and they are preparing a survey. So if anyone hasn’t emailed David@just-worldwide.com you should do it so you can also take the survey when it’s ready.
Gina K

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@boomerexpert

FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

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@boomexert, I am so glad that you posted this. It has been heavily on my mind to really push forward and scream for help. We need to rally all that we can to get more research going for mac/ntm.

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@boomerexpert

FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

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@windwalker, Hi Terry, I’m doing well. I go back in March for a CT scan to see what’s happening with my lungs. Never been sick, no sputum but I finished the 12 months of the three drugs last April. Until then I’ve started taking herbs from the Herbal Antibiotic book. I’m not taking any chances. Nan

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@boomerexpert

FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

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@mannette, Sounds good!

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I am restarting the drugs for MAC. – Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

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My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

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@suzylulu

I am restarting the drugs for MAC. – Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

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I just started the big 3. Sorry to hear you have gone through the process of being so sick. My pulmonary Dr recommended I take the same 3 pills you are just before I lay down to sleep. Since one of the pills recommends eating before taking I eat Chobani Greek yogurt or PR2 Chocolate peanut butter and crackers, sometimes Boom Chicka popcorn. She recommended this regime to hopefully ward off nausea. So far it has worked and I am starting week 2. I have woken up with a weird taste in my mouth and 1 soda cracker helps to lessen that.   RMMMKE 

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Hi Mariah, so sorry to hear about the lung decline. Are you on any medicines now?

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@suzylulu

Hi Mariah, so sorry to hear about the lung decline. Are you on any medicines now?

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I am not on any meds now (except for atrial fib– and the inhalers I have tried precipitate the atrial fib so I just try to keep hydrated and clear the mucous. Actually, I feel good, it is just that I cannot do as much hiking etc. that I have done in the past. However, I am not sure how much age is also a factor. Thanks.

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@suzylulu

I am restarting the drugs for MAC. – Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

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It was just good being done with the meds. Probitotics were very helpful. But all of the meds seem so distant now. IN fact, I had to go into my memory to recall the names. My focus now is on keeping the bronchiectasis from progressing. Thanks and good luck with the treatment.

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@boomerexpert

FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

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what herbs are you on and do you find they are effective?

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@suzylulu

I am restarting the drugs for MAC. – Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

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@suzylulu, I am on the 3 antibiotics now for the past 8 months. I did have to go off the Ethambutol last month due to having such difficulty breathing. So far the only other real side effect I have is horrific body pain and joint pain. I am sure that is from the antibiotics as well but you do what you need to do to try to get threw this. I take Clarithromycin 500 mg 2 times a day and I also take Rifampin 300 mg 2times a day. I also take morphine and oxycodone for the pain. If I can be of any help please text me.
I wish you the very best

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@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

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@windy935 I too have MAC, Bronch, in addition to RA…Lung exercises are crucial and helpful…I do cardio to the extent I can so I’m accelerating my breathing…whatever works for you!

Liked by nick52

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@suzylulu

I am restarting the drugs for MAC. – Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

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I had pain with rifabutin and was changed to rifampin and that helped. Maybe it’s the rifampin as it is in the same class

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@suzylulu

I am restarting the drugs for MAC. – Ethambutol, rifampin, clarithromycin. Was on the big 3 several months ago but got so sick had to be taken off. So we are trying again-3 times a week. Are there any suggestions on best time of day to take and typical side effects. Thanks everyone.

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I notice on my pill days water seems to taste different

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