(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

I am so sorry your coughing is so extreme. Mine was not that severe but enough. I also HIGHLY recommend
Broncolin / with Propolis . It is an all natural Cough syrup. Order from Amazon.
Both cured my cough in less than 3 weeks. I rarely cough and just take a maintenance Clear Lung as needed if I feel a twinge starting to develop. Bless you! 🙏

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@sounder27

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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@sounder27 Hi. I am sorry that you are struggling with your health issues. You may want to ask your dr to prescribe 7% inhable sodium chloride (salt water) that helps to clear up the mucous. Are you on antibiotics?

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@flib, Girl! We just can't seem to get you to feeling better or rid of that cough. Have you been sputem tested for pseudomonas lately? That is usually the cause of constant coughing when you have bronchiectasis.

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@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 It is probably the pseudomonad that has you so sick. There are other drugs that will knock it out besides levaquin. I cannot take levaquin due to stomach cramps. Ask your dr for an inhalable alternate for the levaquin. Ask about tobramycin. Or Cipro (comes pill form and inhable by a different name).

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@windwalker

@sounder27 Hi. I am sorry that you are struggling with your health issues. You may want to ask your dr to prescribe 7% inhable sodium chloride (salt water) that helps to clear up the mucous. Are you on antibiotics?

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No not on antibiotics. Because of afib the macrolides are out. Would a Himalayan salt inhaler be similar to the sodium chloride? Also what about doxycycline?

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@janovr

I am so sorry your coughing is so extreme. Mine was not that severe but enough. I also HIGHLY recommend
Broncolin / with Propolis . It is an all natural Cough syrup. Order from Amazon.
Both cured my cough in less than 3 weeks. I rarely cough and just take a maintenance Clear Lung as needed if I feel a twinge starting to develop. Bless you! 🙏

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@janovr My fourth day on Clear Lung, I believe. Very little coughing today and the most energy I've had in a long time. Thank you. This has given me some hope. I'm taking 2 pills every 4 hours. I tried to find the one with the relieve congestion on the label; couldn't. I'll call the company tomorrow. Feeling happy today! Flib

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@flib

@janovr My fourth day on Clear Lung, I believe. Very little coughing today and the most energy I've had in a long time. Thank you. This has given me some hope. I'm taking 2 pills every 4 hours. I tried to find the one with the relieve congestion on the label; couldn't. I'll call the company tomorrow. Feeling happy today! Flib

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@flib

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@flib Wonderful news!
I take the clear Lungs
Extra Strength.
Blue Label
It says nothing about relieves congestion.
Don’t forget to order the Broncolin cough syrup to have on hand. Awesome stuff!
Keep up the great report! Jan

Liked by kristiemlove

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@flib

@janovr My fourth day on Clear Lung, I believe. Very little coughing today and the most energy I've had in a long time. Thank you. This has given me some hope. I'm taking 2 pills every 4 hours. I tried to find the one with the relieve congestion on the label; couldn't. I'll call the company tomorrow. Feeling happy today! Flib

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@flib Hi there. This post of yours made my day! I always feel badly for you when you are not doing well. So happy to hear that you are getting that stubborn cough under control & that you have some energy. You are another good testimony to the benefits of Clear Lung.

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@sounder27

No not on antibiotics. Because of afib the macrolides are out. Would a Himalayan salt inhaler be similar to the sodium chloride? Also what about doxycycline?

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@sounder27 Hi. Click on my photo icon and read about my treatment plan. It included doxycycline and ciprofloxacin. I had a negative sputem test after 6 months on those two. I was clear of mac after 6 months on those. Then, I got MAI a yr later. Then, at 6 month testing, that was negative. Have been negative since 2014 of any mac. I did, however, get pseudomonas in 2016. Was put on inhaled tobramycin. After 30 days on that, it got rid of the pseudomonas. I have been negative for all bugs since 2016. I am on a low dose antibiotic maintenance plan to this day. It is a prophylactic (preventative) measure to treat the bronchiectasis.

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@windwalker

@flib Hi there. This post of yours made my day! I always feel badly for you when you are not doing well. So happy to hear that you are getting that stubborn cough under control & that you have some energy. You are another good testimony to the benefits of Clear Lung.

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Thanks, Terri. Another good day. Not as thrilling as yesterday's energy but a pretty normal day. That is, I could breathe and run errands and make a meal. Yippee!

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Hi all. I was just reading about biofilm and bacteria and the place for phages. I know of a gentleman whose dr is looking into it for him and another who it worked for, very interesting .juhttps://www.microbiologyresearch.org/docserver/fulltext/micro/130/8/mic-130-8-2059.pdf?expires=1549056187&id=id&accname=guest&checksum=B3C5CF9F284CD61FC5CEAE6747F47B8Dst Lets hope this becomes a treatment.

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I am new to this site. Just found it this morning. Two days from now I begin the 3 antibiotic routine – Monday Wednesday and Friday. I looked up on Google how people taking this medication manage. I'm not sure how to manage this mycobacterium page. My name is Bev and I live on the Gold Coast, near Brisbane Australia. It is wonderful to hear what other people with this issue have managed.

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would love to more about phages and what they are and what they do

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@bevmac

I am new to this site. Just found it this morning. Two days from now I begin the 3 antibiotic routine – Monday Wednesday and Friday. I looked up on Google how people taking this medication manage. I'm not sure how to manage this mycobacterium page. My name is Bev and I live on the Gold Coast, near Brisbane Australia. It is wonderful to hear what other people with this issue have managed.

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Hi Bev: I have been dealing with MAC/MAI for 8 years. Did the meds for 18 months two different times. I am an expert on taking the drugs by now. Going on them again. I have very few symptoms with my disease luckily except for fatigue. Here is my humble advise. When I went to the drugstore and first bought all those pills it was scary. I lined them up on my island and thought- okay guys, we're in this together and we're going to knock this thing. Attitude is everything I believe. I also gleaned advice off of these sites and it worked. I took Acidopholus probiotic everyday that I ordered online (patients swear by it) and a vaginal probiotic to prevent yeast. These drugs kill the good, bad and ugly. Your good bacteria need replacing. Always eat something in the morning before pills. If you go into this stressed, it will add to the side effects. Go into it determined!! The endorphins will mitigate it. I have had a happy life with MAC- travel, built at house, moved to another city, and still cook for all the holidays. Good luck!

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