(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

@onana

@brigby To answer your questions, I didn't start with IV antibiotics. By the time my condition worsened (spring 2017, after living with bronchiectasis diagnosis since 1997 and NTM diagnosis since 2008) I was retired from full-time work. I still work part-time and I've been working around the Monday, Wednesday, Friday doses of the 3 antibiotics. On those days I like to stay home in the afternoons to be close to my own bathroom and be able to rest if I need to rest. But I have to say those days are getting easier as time goes on.

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@onana Super helpful info thank you so much, and may Godnbless you many more good days!

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Hi, My name is Sandy and I am new to the group. My Mom has MAC and has been on the big 3 for 2 months. She has lost her ability to see color in one eye, so they discontinued the ethambutol. Now, they want to add amikacin but we are not sure about this. I've been reading that some people lose their voice,while on this medicine .Also, vertigo is a possible side effect. My mom has a history with vertigo already. I was just wondering if anyone out there who has taken (inhaled) amikacin (Arikace) could give us the benefit of their experience. Was it worth it from your perspective?

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Hi and welcome @sandysupermom I was on Amikacin Inhaled for a year. I only completely lost my voice for 3 days early on , but my voice was a little croaky sometimes. I did not get any vertigo but you say your mum already gets this so you need to ask your dr. For me it was really worth it, I got a clear sputum and my cavities closed, where as on the meds 3 days a week for 2 years It hardly changed anything on my CT. All the best Heather

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OMG this is so scary, I was just told I have MAC . I live in FLorida and my doctor tells me the spores are in the air, soil even the water. Bad news.

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@jammer…I know it sounds scary, but many of us have beaten it and we live for years without an active infection. I haven't gotten re-infected even though I live on the river and work in my garden every day.
The big 3 (antibiotics specific to the type of organisms) do work. Read through the discussions and you will find many helpful suggestions.
This is a problem to be solved and this site is the place to find answers. There are suggestions of what questions to ask your doctor and what tests to demand. You will be able to handle this.

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Thank you for your words of wisdom and encouragement , I read about many side effects from meds like blind, loss of voice etc. VERY scary.

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@jammer…Yes, there may be side effects, but the ID doctors make sure your eyes are checked every month and they do blood work frequently to catch any bad consequences before they become permanent.Your lung damage may be mild enough that the strong antibiotics aren't needed. Get copies of your records and second opinions.Then you can make informed decisions.

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@jammer

OMG this is so scary, I was just told I have MAC . I live in FLorida and my doctor tells me the spores are in the air, soil even the water. Bad news.

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Not a fun Dx but through this group you'll be fear-free! So many treatment options from folks' docs all around the country…include no need to treat if you're symptom-free like me. Please read through the posts, save those that are most relevant for you, and enjoy the feeling that you're not alone, and you'll be OK!

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@jammer

OMG this is so scary, I was just told I have MAC . I live in FLorida and my doctor tells me the spores are in the air, soil even the water. Bad news.

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Hi I also live in Florida. I was infected 4 years ago and the town where I live there’s a lot of new construction with homes. My local pulmonologist said I could have been affected by all the open soil and dust flying around. But I know our water here is not the best also. I was so scared at first but life goes on and we try to live the best life that we have. I hope you feel encouraged and feel better. Also I pray that you doctors will work with you so you can make the best decision. This group has helped me so much! I am blessed to have found so many friends with so much knowledge of this disease. Hugs Rita.

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I also have common variable Immunodeficiency ,(CVID) as well as MAC. I tried the 3 antibiotics and was not able to tolerate two of them. So I was discontinued. Now my lungs have gotten much worse. My pulmonologist is referring me to UCLA for treatment. I have also developed Bronchiectasis from the MAC infection. I do not know anyone with CVID. Does anyone on this discussion have CVID?

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@america

Hi I also live in Florida. I was infected 4 years ago and the town where I live there’s a lot of new construction with homes. My local pulmonologist said I could have been affected by all the open soil and dust flying around. But I know our water here is not the best also. I was so scared at first but life goes on and we try to live the best life that we have. I hope you feel encouraged and feel better. Also I pray that you doctors will work with you so you can make the best decision. This group has helped me so much! I am blessed to have found so many friends with so much knowledge of this disease. Hugs Rita.

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I live in Leesburg in central Fl. I just learned 3 days ago about my MAC he is going to do a bronco next week to get a sample from my lungs to see how bad mine is. My heart doctor found my problem while doing xray of my heart. I have never had any problems so this would not have been found yet if not for my heart doctor. Thank God. My pulmonologist will send me to Gainesville for treatment. This I am so worried about all the side affects. I moved to my dream retirement spot and now I learn Florida is making me sick. Don't that suck. Thanks for the info and God bless you, the doctors don't tell you all so we have to ask questions from those that have been there. Pat

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@egayle187

@jammer…Yes, there may be side effects, but the ID doctors make sure your eyes are checked every month and they do blood work frequently to catch any bad consequences before they become permanent.Your lung damage may be mild enough that the strong antibiotics aren't needed. Get copies of your records and second opinions.Then you can make informed decisions.

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Thank you so much for your words

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