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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

sounder27 | @sounder27 | Jun 26, 2019
In reply to @colleenyoung "Hi @sounder27, Thanks for your private message. I am responding to you here so that others..." + (show)
@colleenyoung

Hi @sounder27, Thanks for your private message. I am responding to you here so that others like @jkiemen can also benefit from the information and those who have been treated at Mayo Clinic Rochester can add to my information -- although I don't think I can top all the great advice shared by @auntnanny! Who else has been to Mayo Rochester?

Mayo Clinic pulmonologists are part of an integrated team of highly specialized medical and surgical experts who work together. Whichever doctor you see benefits from the collective knowledge of the Mayo's MAC expertise. Here is the contact information for Mayo Clinic http://mayocl.in/1mtmR63

See the Visiting Mayo Clinic group for more helpful tips about hotels and staying in Rochester. There is a wealth of first-hand recommendations and experiences from members here:
- Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
- What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

You can also contact the Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

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Thank you so very much. I appreciate your response and auntnannys as well.

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wal6578 | @wal6578 | Jun 27, 2019

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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3 replies
sandykayhud | @sandykayhud | Jun 27, 2019

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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1 reply
alleycatkate | @alleycatkate | Jun 27, 2019
In reply to @wal6578 "I was diagnosed with Bronchiectasis about a month ago after 15 years of clearing my throat..." + (show)
@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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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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3 replies
auntnanny | @auntnanny | Jun 27, 2019
In reply to @alleycatkate "Hello @wal6578 . I understand your concern. I have been diagnosed with bronchiectasis as well as..." + (show)
@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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alleycatkate | @alleycatkate | Jun 27, 2019

@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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1 reply
sounder27 | @sounder27 | Jun 27, 2019
In reply to @alleycatkate "Hello @wal6578 . I understand your concern. I have been diagnosed with bronchiectasis as well as..." + (show)
@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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1 reply
sounder27 | @sounder27 | Jun 27, 2019
In reply to @sounder27 "Thanks so much for your teply" + (show)
@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

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heathert | @heathert | Jun 27, 2019
In reply to @sandykayhud "I have been following this site for many months but this is my first time to..." + (show)
@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?

Jump to this post

@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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1 reply
auntnanny | @auntnanny | Jun 27, 2019
In reply to @alleycatkate "@auntnanny ...Hello Aunt Nanny. I am sorry to report this but Dr. Leventhal at the Mayo..." + (show)
@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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