(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

@aoise

Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

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@aoise welcome! No GP…find a Pulmo or Infectious disease doc well versed w/MAC…only way to go for best treatment

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@aoise I am sorry you have to be here with us. The antibiotics are bad for some and but not for all. I have managed to get through nearly a year with tolerable side effects and have been working full time. It can work. I do get tired but I can function. I sleep better that's for sure. I would not wait if it is causing changes in your lung tissue

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@aoise

Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

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@aoise welcome to the group, we are a wonderful caring group, with alot of knowledge. At first the meds can cause side effects , however it gets alot better, I have been on them over 4 years now . At first MAC can be confusing so please dont hesitate to ask us any questions. Heather

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@aoise

Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

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@aoise I'm writing to encourage you to consider the treatment if it's being recommended for you. I was adamantly opposed to taking the treatment because my former pulmonologist had frightened me, told me "the treatment is worse than the disease." But then my condition worsened and I developed cavities in my lungs. Now I'm sorry I didn't begin the treatment sooner because it could possibly have reduced the amount of damage caused by the NTM infection. I've been on the treatment (azithromycin, ethambutol, and rifampin) for two months. It's not fun but it's doable and I can see that it's reducing signs of infection. I would encourage you to try to think beyond your current circumstances and make every effort to limit further damage. Best wishes! Olivia in California

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@aoise

Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

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@aoise Hi, so sorry you’ve joined the club. I will probably have to start treatment soon, too, and like you I dread it. To the positive, I did make it 2 years without having to do the big 3. Prayers for us all.

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@onana

@aoise I'm writing to encourage you to consider the treatment if it's being recommended for you. I was adamantly opposed to taking the treatment because my former pulmonologist had frightened me, told me "the treatment is worse than the disease." But then my condition worsened and I developed cavities in my lungs. Now I'm sorry I didn't begin the treatment sooner because it could possibly have reduced the amount of damage caused by the NTM infection. I've been on the treatment (azithromycin, ethambutol, and rifampin) for two months. It's not fun but it's doable and I can see that it's reducing signs of infection. I would encourage you to try to think beyond your current circumstances and make every effort to limit further damage. Best wishes! Olivia in California

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@onana Hi there, thanks for your post re: when to treat.

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@onana

@aoise I'm writing to encourage you to consider the treatment if it's being recommended for you. I was adamantly opposed to taking the treatment because my former pulmonologist had frightened me, told me "the treatment is worse than the disease." But then my condition worsened and I developed cavities in my lungs. Now I'm sorry I didn't begin the treatment sooner because it could possibly have reduced the amount of damage caused by the NTM infection. I've been on the treatment (azithromycin, ethambutol, and rifampin) for two months. It's not fun but it's doable and I can see that it's reducing signs of infection. I would encourage you to try to think beyond your current circumstances and make every effort to limit further damage. Best wishes! Olivia in California

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@onana if you were working, are you still able to work full time? Did you start with IV antibiotics?

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@boomerexpert

@aoise welcome! No GP…find a Pulmo or Infectious disease doc well versed w/MAC…only way to go for best treatment

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@aoise, Hi there. You really do need a well versed specialist to handle this disease. Read all that you can here on our past posts and check out the discussion board on our group's home page. There is tons of info.

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@america

Hi guys thanks for all the information. I was told to se an endocrinologist and I have been trying to get an appointment but nothing until January. Meanwhile I’m drinking lots of coconut water and Gatorade. I also tried eating some canned fish. I am hoping to feel stronger soon. This is a long journey. I’ll be checking my sodium levels again next week. Thanks to this wonderful group Rita

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@america Rita, you are in my thoughts. Wishing you luck on your sodium level test next week. Hugs!

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@aoise

Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

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@aoise welcome to this site with all these wonderful women. I'm not on here very much but I read everything. I got diagnosed over two years and was totally asymptomatic and the bronchiectasis was found accidentally when I had a breast MRI (I have breast cancer in my family) by a very good radiologist. Some docs probably might not have treated me because I wasn't sick but when I followed up with CT scan my local pulmonologist said my lungs looked bad and started me on the big 3. Two years later I'm glad I went ahead and did it only because my lungs would have probably even gotten worse. I had no problems with the big three. I did get tinnitus in my ears near the end but that was it. And I have my own business and still work six days a week still because I have to and decided not to let this disease get the best of me. I do get tired but I was tired before so I never know if it's the disease or not. I did get the bad flu this past February with a horrible cough and the cough has "set" in…I've been coughing for nine months now and sound like a sick donkey when I cough. So now I actually feel like I have lung disease with the coughing and phlegm. But I'm going to a new doctor who specializes in bronchiectasis at the Medical University in Charleston, SC so I'm feeling good about that. My last sputum test showed no MAC but that bug can pop back up at anytime. @windwalker is our fearless leader and mentor of the group but there are so many others that have so much good advice…@boomerexpert @tdrell @heathert @ling (i'm not sure if I've written ling's name right) and more. I have learned so much from all of them and others.. Hang in there. Nan in SC

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Thank you to everyone who has kindly replied and made me feel welcome and not quite so on my own with this condition. I really appreciate it, especially the encouragement to consider taking the medication. I am seeing a specialist at my local hospital but I know my GP will be able to talk over what the hospital has communicated to him. Thanks everyone and best wishes.

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@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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