1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Brenda R. | @brigby | Jan 28, 2019
In reply to @donut "They say that is what I have now after I have had MAC, taken the "Big..." + (show)
@donut

They say that is what I have now after I have had MAC, taken the "Big 3", had Lung Abscess in hospital for 20 days of multiple ivs.
now they way I have Mycobacteium Gordonae and pseudomonas aeruginosa infection again. They have me on Levequin again. Which is so painful to my joints.

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@donut I’m so sorry for all the pain and fear you have endured in this journey. I understand too well where you are. I really had trouble with Levaquin, too. Maybe you could let your doctor know it is bothering your joints? Prayers

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jammer | @jammer | Jan 28, 2019

I just found out I have Mycobacteium Gordonae and just starting my journey. Sorry to hear that yours has come back. I was wondering if this ever went away and I guess it does. Did they ever tell you where this comes from? Good luck and God bless.

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donut | @donut | Jan 28, 2019

Water is what I was told. I'm sorry I'm at work. Just can type a quick message. I pray the Lord Blesses you They say they do not need to give me anything for the gordonae. What exactly have they told you? I message you later.

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1 reply
donut | @donut | Jan 28, 2019

I did and the ER doctor told me to take ibuprofen..which the internet says will react. So, he called my infectious disease doctor who sent me to the ER for IVs and they the ER doctor comes back mad and says this is your choice or set an appointment up with your infectious disease doctor rudely. My husband said she is just scared. He was in such a hurry...we drove over an hour to get there doing what the dr that knows my body told me to do. I am in a hurry sorry. wanted to quickly respond. So frustrating...

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boomerexpert | @boomerexpert | Jan 28, 2019

@jammer for what reason do you not want to go to Shands?

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1 reply
boomerexpert | @boomerexpert | Jan 28, 2019
In reply to @sounder27 "Thanks so much for the info and kindness. I have been following the posts for a..." + (show)
@sounder27

Thanks so much for the info and kindness. I have been following the posts for a couple of weeks and I don’t feel so isolated. My cardiologist doesn’t recommend any herbal things and has made me stop taking some that had worked for me prior to my blood thinner and calcium channel blocker. I have recently reduced my work hours to part time. Again thank you all for sharing your journies with this disease.

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@sounder27 yep...it's a constant balancing act for all of us with multiple conditions...Once you get yours figured out you'll be good to go!

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1 reply
sounder27 | @sounder27 | Jan 28, 2019
In reply to @boomerexpert "@sounder27 yep...it's a constant balancing act for all of us with multiple conditions...Once you get yours..." + (show)
@boomerexpert

@sounder27 yep...it's a constant balancing act for all of us with multiple conditions...Once you get yours figured out you'll be good to go!

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That’s just it. I haven’t gotten anywhere near to figuring this out. I am beginning to get discouraged. There do not seem to be any pulmonary doctors in the Rhode Island area that have any solutions to offer for addressing the whole body. I went into hospital to have an ablation for the afib and the anesthesiologist would not proceed because of the mucous buildup from the Mac/bronchiectas and the length of time for intubation. I need to get rid of the mucous. Will the clear lung do that?

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1 reply
jammer | @jammer | Jan 28, 2019
In reply to @donut "Water is what I was told. I'm sorry I'm at work. Just can type a quick..." + (show)
@donut

Water is what I was told. I'm sorry I'm at work. Just can type a quick message. I pray the Lord Blesses you They say they do not need to give me anything for the gordonae. What exactly have they told you? I message you later.

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I just got back my test to let me know what I have and it is the Gordonae. My doctor does not know what to do he is sending me to Shands in Gainesville, FL as soon as he gets my CT back maybe next week. Why no treatment for the gordonae?? Coming from water, drinking water?

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jammer | @jammer | Jan 28, 2019
In reply to @boomerexpert "@jammer for what reason do you not want to go to Shands?" + (show)
@boomerexpert

@jammer for what reason do you not want to go to Shands?

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My doctor says they are good and is closer to my home, why?

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janovr | @janovr | Jan 29, 2019
In reply to @nick52 "@sounder27 i would like to share my experience with you. Just like you my specialist for..." + (show)
@nick52

@sounder27 i would like to share my experience with you. Just like you my specialist for infection didn’t want to give me any of the big 3 cocktail because of the severe side effects. In order to prevent being sicker I used alternatives medicine. I discover what is call Clear Lungs to keep my lungs clean of infections. I started taking Probiotic to clear the infection and used ClearLungs extra strenght. I use RIDGECREST the blue cover. Make sure this is written on it. RELIEVE CONGESTION, SUPPORT FREE BREATHING, KEEP AIRWAYS OPEN, BALANCE MUCUS LEVELS. there is a verison with a red cover it doesn’t have the RELIEVE CONGESTION in it. You can call Ridgecrest for any concern or questions 1-800-242-4649. They are located in UT (usa) . You have a directions on the bottle and I use that if I feel I am really congested. I take some for prevention when I start a cold or have a dry cough or wheeze a bit or have a bit of mucus. I am very alert to my body so I use it when I feel I should. If I eat mucus forming food like ice cream or dairy product or pizza etc. I might take some if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. II am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. If you have stomach or a lot of mucus, I recommend you buy this book “Super Woman RX” by Tasneem Bhatia,MD. Follow her menu after you will identified the Powe type you are. Very interesting and it made a difference in my life. BUT THIS IS ME! I was diagnosed in 2010 with bronchiectasis after a severe pneumonia. MAC was discover few years later after a bronchoscopy. There is more alternative medicine outhere if you search for a solution. Good luck and keep searching for a solution. Do not hesitate if you have more questions. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

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@nick52

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