(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

@ling123

@alleycatkate This MAC thing is a total mystery to me. I've done as much reading on it as I can stomach. If the doctors can't even be on the same page with the cause and treatment plans, I figure I will just concentrate on doing what I can do and let the rest lie where it may. I totally agree with you about diet. One big component is sugar. We've got to cut as much sugar from our diet as we can manage. Not just sugar as what's in desert, but carbohydrate. If I need to eat it, I go for whole grains, such as whole wheat and brown rice, keeping the white stuff to a minimum. Just so happens I'm cursed with family history of diabetes. I don't have it yet. But that is the biggest motivation for me to cut down on sugar and carbs. The fear of getting diabetes is strong enough to keep myself inline. And I feel pretty good so far.

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@ling123 I wholeheartedly agree with you, sugar is our enemy, and nutrient rich foods are key!

I have been on ketos for a year which means no carbs

Liked by ling123

@america here is my opinion on that. We moved to Tennessee for many reasons, but our ten children and thirteen grand babies all live in Connecticut. I was physically sick with MAC in Tennessee, but the lack of a support system (family) took more of an emotional toll on me, and the MAC actually got worse. After a year we moved back. I am still sick, but my family is ever present. That support should never be taken for granted. Whenever the good God calls me home, I would rather be found where my family is hands down! I hope this experience helps put perspective on the correlation between physical and emotional wellness. Moving away taught my husband and me a very valuable life lesson. Good luck. (@irene5)

Thanks Irene5! Family means a lot to me and I know it the hardest thing to do. I have 4 daughters and I son and we are all 10 minutes away from each other. The good thing is we’re there for each and I know life would be empty without them. Thank you for sharing your experience it means a lot. Hugs Rita

@america

I came Florida 15 years ago from NY! I love this place but my husband wants to move because he thinks I’ll always be sick here. I don’t know what to do! My 5 kids all lives here and I love my grandkids so much. It will break my heart to leave them. I need help!!!!

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Hi America…if it were me I would stay where u r and do the necessary things to stay healthy…baths, boil your water etc….the emotional component to this disease, I think is even more important…be happy💞

@megan123

Hi America…if it were me I would stay where u r and do the necessary things to stay healthy…baths, boil your water etc….the emotional component to this disease, I think is even more important…be happy💞

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Thanks Jennifer! I really appreciate your help! I believe I’ll not be moving hugs rita

@ling123

@alleycatkate This MAC thing is a total mystery to me. I've done as much reading on it as I can stomach. If the doctors can't even be on the same page with the cause and treatment plans, I figure I will just concentrate on doing what I can do and let the rest lie where it may. I totally agree with you about diet. One big component is sugar. We've got to cut as much sugar from our diet as we can manage. Not just sugar as what's in desert, but carbohydrate. If I need to eat it, I go for whole grains, such as whole wheat and brown rice, keeping the white stuff to a minimum. Just so happens I'm cursed with family history of diabetes. I don't have it yet. But that is the biggest motivation for me to cut down on sugar and carbs. The fear of getting diabetes is strong enough to keep myself inline. And I feel pretty good so far.

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@ling123 I totally agree with your view on sugar and white carbs. I too tend towards higher blood sugar levels (pre-diabetic) even when I do not eat sugar and very rarely eat white carbs and also limit fruits. I've found an Ayurvedic herb called Gymna Sylvestre taken daily brings my sugar levels down very well. I think we need to do all we can to stay as healthy as possible.

Liked by ling123

@windwalker

@spencersok here is a post to help with your question about amakacin. Posted by heathert @heathert, Fri, Nov 9, 2018 8:18pm
@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.

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@windwalker @heathert @supermom890 here’s an update from jasmine321. My CT scan looks worse; initial scan in 2012 only right middle lobe was affected. CT scan in January 2019, bronchiectasis spread to small part of lower lobe. Underwent bronchoscopy in February. Copious mucoid yellow secretions were found in the right mainstream bronchus, in the right middle lobe and in the superior segment of the right lower lobe. My Pulmonologist partnered with an ID doctor. ID prescribed Ethambutol, Rifampin and Azithromycin daily plus Arikase inhalation. I read the packet sent to me about the Arikase inhalation and found out vertigo and tinnitus are common side effects. I already have vertigo that’s why I don’t drive far. My husband drives me to work at times. I also have ringing in my ears. Therefore I told the ID doctor that I will do the 3 antibiotics for 6 months, and if no improvement, we will add the Arikase inhalation. I work full time so I cannot afford to call in sick all the time because of the side effects of the medications. My first treatment was MWF for the 3 antibiotics. Now, my ID doctor prescribed the big 3 daily. Wondering if daily is too much. Today is my fifth day of taking the big3. So far, no problems. Taking probiotics with prebiotics.

Liked by heathert, anniepie

@mariierod123

I have been on ketos for a year which means no carbs

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@mariierod123 I'm not on any particular diet except consciously try to include healthy items in my daily meals. When I looked up Keto diet, I was surprised to find out that I'm already eating a number of the things on daily basis that are in this diet, such as avocado, blueberries, almonds, and eggs. There are other food items in this diet that I eat on regular basis. Although I'm not strict on what I eat or not eat, I feel that I'm doing something right because I feel good and healthy.

@alleycatkate

@ling123 I totally agree with your view on sugar and white carbs. I too tend towards higher blood sugar levels (pre-diabetic) even when I do not eat sugar and very rarely eat white carbs and also limit fruits. I've found an Ayurvedic herb called Gymna Sylvestre taken daily brings my sugar levels down very well. I think we need to do all we can to stay as healthy as possible.

Jump to this post

@alleycatkate I'm also pre-diabetic. After going on the low carb diet, my A1C number went from slightly above the borderline to slightly below it. But it is plateaued after that. My doctor told me that she felt that my blood sugar might have always been on the higher end of the normal range and I just wasn't aware of it until my diagnosis. So this may be the best I can hope for. That's OK with me as long as I can keep it from creeping up. So far so good.

@jasmine321 My wife was on the same drugs and she could not tolerate them. All total she was taking Rifampin 300mg x 2; Ethambutol 400mg x 4; and Azithromycin 500mg x 1 three times per week Tuesday, Wednesday and Friday. She was on them for approximately 6 months, These drugs were in addition to the antirejection med she is taking. She loss lots of weight and stays in bed more than she was out. She gave it up. It seems to me, no matter how many drugs you take, there isn't a cure. 18 months is a long time to take all those drugs and not have a definite outcome. Blessing to all concerned. I have made it my commitment to pray for all of you daily…

@jasmine321

@windwalker @heathert @supermom890 here’s an update from jasmine321. My CT scan looks worse; initial scan in 2012 only right middle lobe was affected. CT scan in January 2019, bronchiectasis spread to small part of lower lobe. Underwent bronchoscopy in February. Copious mucoid yellow secretions were found in the right mainstream bronchus, in the right middle lobe and in the superior segment of the right lower lobe. My Pulmonologist partnered with an ID doctor. ID prescribed Ethambutol, Rifampin and Azithromycin daily plus Arikase inhalation. I read the packet sent to me about the Arikase inhalation and found out vertigo and tinnitus are common side effects. I already have vertigo that’s why I don’t drive far. My husband drives me to work at times. I also have ringing in my ears. Therefore I told the ID doctor that I will do the 3 antibiotics for 6 months, and if no improvement, we will add the Arikase inhalation. I work full time so I cannot afford to call in sick all the time because of the side effects of the medications. My first treatment was MWF for the 3 antibiotics. Now, my ID doctor prescribed the big 3 daily. Wondering if daily is too much. Today is my fifth day of taking the big3. So far, no problems. Taking probiotics with prebiotics.

Jump to this post

@jasmine321 Thanks for the update. Sorry to hear it is worse. I think we are put on daily meds for cavities or quite an invasive infection, The ringing in the ears is not nice however my eye dr said nobody has it worse than others so try to ignore it and you wont notice it anymore, it worked for me. Talk to your Dr if you think he may be wrong. All the best Heather

@spencersok

@jasmine321 My wife was on the same drugs and she could not tolerate them. All total she was taking Rifampin 300mg x 2; Ethambutol 400mg x 4; and Azithromycin 500mg x 1 three times per week Tuesday, Wednesday and Friday. She was on them for approximately 6 months, These drugs were in addition to the antirejection med she is taking. She loss lots of weight and stays in bed more than she was out. She gave it up. It seems to me, no matter how many drugs you take, there isn't a cure. 18 months is a long time to take all those drugs and not have a definite outcome. Blessing to all concerned. I have made it my commitment to pray for all of you daily…

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@spencersok That is very kind of you to pray for us all. Thank you for that thoughtful gesture.

Liked by anniepie

@spencersok

@jasmine321 My wife was on the same drugs and she could not tolerate them. All total she was taking Rifampin 300mg x 2; Ethambutol 400mg x 4; and Azithromycin 500mg x 1 three times per week Tuesday, Wednesday and Friday. She was on them for approximately 6 months, These drugs were in addition to the antirejection med she is taking. She loss lots of weight and stays in bed more than she was out. She gave it up. It seems to me, no matter how many drugs you take, there isn't a cure. 18 months is a long time to take all those drugs and not have a definite outcome. Blessing to all concerned. I have made it my commitment to pray for all of you daily…

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@spencersok Thank you for the prayers. My pulmonologist suggested surgery (lobectomy) if medical management will not treat the Infection.

@irene5

@spencersok That is very kind of you to pray for us all. Thank you for that thoughtful gesture.

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@spencersok, thank you for the prayers!

Liked by janovr, anniepie

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