(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

@alleycatkate

Hello @wal6578 . I understand your concern. I have been diagnosed with bronchiectasis as well as MAC. Originally my local pulmonologist said…the cure can be worse than the disease. We were to take a wait and see approach. Since that time, I discovered this group and found that inhalation of a 7% saline solution is a good protocol for clearing phlegm and, I believe, keeping the bug down. Since I had a mistrust of my local Dr, I also went to Mayo for a second opinion and for information that I had not received. (extensive) It was so very worthwhile for my peace of mind and for staying on top of this health issue. I too have a mild case of both with little symptoms other than excess phlegm, a little shortness of breath and some fatigue. I cannot tell you how good it was to get advice from someone that I trusted…along with the inclusion of advice to nebulize 7% saline, a suggested acapella for clearing the airway and attention to actually ridding me of my years of acid reflux which can aspirate into the lung. He said no need for drugs and possibly I may never need them. Anyway…I think you would benefit from a second opinion. I have peace of mind and the future is not so scary to me. He has me stay on top of my disease with yearly X-rays and sputum tests…and always have a script for a 2 week antibiotic in case of a flare-up. I hope you are in a similar place. I would certainly seek a second opinion, if only for peace of mind and to check the pain in your chest. Also, I have learned on this site that there can be a natural conversion of MAC. Wow! This site is a great source of info. Best of health and luck to you. Kate

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alleycatkate — I read with interest your post and would like to ask which Mayo's and which doctor you are seeing — if you can share.

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@auntnanny …Hello Aunt Nanny. I am sorry to report this but Dr. Leventhal at the Mayo clinic is retiring in August… They have a group in pulmonology so you could probably call to find who is the MAC specialist. I was unhappy to hear the news and I know several others on this site are probably unhappy too. Kate

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@alleycatkate

Hello @wal6578 . I understand your concern. I have been diagnosed with bronchiectasis as well as MAC. Originally my local pulmonologist said…the cure can be worse than the disease. We were to take a wait and see approach. Since that time, I discovered this group and found that inhalation of a 7% saline solution is a good protocol for clearing phlegm and, I believe, keeping the bug down. Since I had a mistrust of my local Dr, I also went to Mayo for a second opinion and for information that I had not received. (extensive) It was so very worthwhile for my peace of mind and for staying on top of this health issue. I too have a mild case of both with little symptoms other than excess phlegm, a little shortness of breath and some fatigue. I cannot tell you how good it was to get advice from someone that I trusted…along with the inclusion of advice to nebulize 7% saline, a suggested acapella for clearing the airway and attention to actually ridding me of my years of acid reflux which can aspirate into the lung. He said no need for drugs and possibly I may never need them. Anyway…I think you would benefit from a second opinion. I have peace of mind and the future is not so scary to me. He has me stay on top of my disease with yearly X-rays and sputum tests…and always have a script for a 2 week antibiotic in case of a flare-up. I hope you are in a similar place. I would certainly seek a second opinion, if only for peace of mind and to check the pain in your chest. Also, I have learned on this site that there can be a natural conversion of MAC. Wow! This site is a great source of info. Best of health and luck to you. Kate

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Thanks so much for your teply

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@sounder27

Thanks so much for your teply

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Alleycatkate. Thanks for your reply. It’s giving me the push I need to get that 2nd opinion

Liked by alleycatkate

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@sandykayhud

I have been following this site for many months but this is my first time to respond. I have taken the big 3 for 2 years. It did clear up my MAC but it soon returned. My dr is now wanting to put me on the med Arikares. Has anyone taken this med? It seems to have a lot of side effects and I am not sure if that is the route I want to go? Anyone familiar with this?

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@sandykayhud I was on Arkarice for a year and it was fantastic, only side effect was loss of voice and bit of a sore throat in the beginning and I would inhale just b4 bed, rince my mouth after inhaling and suck on sudafed which all helped alot. To me Arkarice was great , the big 3 diddnt get rid of my MAC but Arkirice gave me negitive sputums. All the best. Heather

Liked by suzyqueue, anniepie, rits

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@alleycatkate

@auntnanny …Hello Aunt Nanny. I am sorry to report this but Dr. Leventhal at the Mayo clinic is retiring in August… They have a group in pulmonology so you could probably call to find who is the MAC specialist. I was unhappy to hear the news and I know several others on this site are probably unhappy too. Kate

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alleycatkate…… thank you for responding. I have heard great things about Dr. Leventhal (Florida, right)? I use Dr. Moua at Mayo's in Rochester. I was wondering where your doctor is. Thank you

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@alleycatkate

Hello @wal6578 . I understand your concern. I have been diagnosed with bronchiectasis as well as MAC. Originally my local pulmonologist said…the cure can be worse than the disease. We were to take a wait and see approach. Since that time, I discovered this group and found that inhalation of a 7% saline solution is a good protocol for clearing phlegm and, I believe, keeping the bug down. Since I had a mistrust of my local Dr, I also went to Mayo for a second opinion and for information that I had not received. (extensive) It was so very worthwhile for my peace of mind and for staying on top of this health issue. I too have a mild case of both with little symptoms other than excess phlegm, a little shortness of breath and some fatigue. I cannot tell you how good it was to get advice from someone that I trusted…along with the inclusion of advice to nebulize 7% saline, a suggested acapella for clearing the airway and attention to actually ridding me of my years of acid reflux which can aspirate into the lung. He said no need for drugs and possibly I may never need them. Anyway…I think you would benefit from a second opinion. I have peace of mind and the future is not so scary to me. He has me stay on top of my disease with yearly X-rays and sputum tests…and always have a script for a 2 week antibiotic in case of a flare-up. I hope you are in a similar place. I would certainly seek a second opinion, if only for peace of mind and to check the pain in your chest. Also, I have learned on this site that there can be a natural conversion of MAC. Wow! This site is a great source of info. Best of health and luck to you. Kate

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Thank you for responding. I am not a medication taker so hearing this made me feel better. I have to check with my insurance but I definitely will check into the Mayo Clinic.

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@wal6578

I was diagnosed with Bronchiectasis about a month ago after 15 years of clearing my throat and bringing up sputum and being told it is just post nasal drip no worries. I was put on Amoxicillin for 14 days and Everything has gone away. No more clearing throat, cough, sputum, chest tightness. However I was waiting to see my dr for follow up to let him know that I still had a full pain when deep inhaling on left side. He called me yesterday to tell me that they discovered MAC and he is referring me to an infectious disease specialist and I will be on antibiotics for 6 months to a year. At first I thought no biggie until I read all the horror stories. I have none of the symptoms of MAC. No cough, fever, have never experienced fatigue, no diarrhea, no weight loss, I love food and very much enjoy eating, no night sweats, chills. I don’t get it. Your post made me feel better about the meds and side effects. When I was researching I thought if I am not experiencing any ill effects then why do I want to take something that will make me ill.

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https://www.nationaljewish.org/ntmvideos2016
Please listen to dr Daley’s lecture ❤️

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@wal6578

I was diagnosed with Bronchiectasis about a month ago after 15 years of clearing my throat and bringing up sputum and being told it is just post nasal drip no worries. I was put on Amoxicillin for 14 days and Everything has gone away. No more clearing throat, cough, sputum, chest tightness. However I was waiting to see my dr for follow up to let him know that I still had a full pain when deep inhaling on left side. He called me yesterday to tell me that they discovered MAC and he is referring me to an infectious disease specialist and I will be on antibiotics for 6 months to a year. At first I thought no biggie until I read all the horror stories. I have none of the symptoms of MAC. No cough, fever, have never experienced fatigue, no diarrhea, no weight loss, I love food and very much enjoy eating, no night sweats, chills. I don’t get it. Your post made me feel better about the meds and side effects. When I was researching I thought if I am not experiencing any ill effects then why do I want to take something that will make me ill.

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Pls listen to Dr Daley’s https://www.nationaljewish.org/ntmvideos2016

Liked by pfists, anniepie

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@heathert

@sandykayhud I was on Arkarice for a year and it was fantastic, only side effect was loss of voice and bit of a sore throat in the beginning and I would inhale just b4 bed, rince my mouth after inhaling and suck on sudafed which all helped alot. To me Arkarice was great , the big 3 diddnt get rid of my MAC but Arkirice gave me negitive sputums. All the best. Heather

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Thanks for your response. Was your loss of voice for a prolonged period of time? I am already having lots of voice problems due to damage to my esophagus from radiation treatments. I have had speech therapy and my voice still comes and goes. So you can see why I am hesitant about the side effect of the Arkarice. Are you still negative for the MAC? Thanks for the help….Sandy

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@judyhodgern

https://www.nationaljewish.org/ntmvideos2016
Please listen to dr Daley’s lecture ❤️

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Judyhodgern. This was so very informative. Thank you

Liked by anniepie

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Hi @sandykayhud The voice problem was bad for a week(I had no voice for 3 days so took a break) then started getting better, it was always there a bit but not a problem most the time. Take care

Liked by anniepie

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@heathert

Hi @sandykayhud The voice problem was bad for a week(I had no voice for 3 days so took a break) then started getting better, it was always there a bit but not a problem most the time. Take care

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Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

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Thanks for that info @anniepie, love knowing that people are working on a cure for us. Lets hope SPR720 is successful in becoming a medication approved.

Liked by anniepie

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@anniepie

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

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@anniepie
This SPR720 is something to keep our eye out for.
It is a drug that you would take in combo with others right? I will look for more articles on it.
Thanks!
Shari

Liked by anniepie

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