(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

@windwalker

@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?

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Your suggestions have spurred me to consider becoming more disciplined in my approach to my multi faceted problems. It seems one is responsible for the other like a cascade of physical effects that influence the others. Sometimes it’s difficult to find the point of origin and begin there to improve the big picture. Thank you for pointing out the place to begin the improvements and encouraging me to action on my own behalf. I am grateful for finding this forum to share our experiences regarding our methods and products that improve the quality of our day to day coping with all the health issues that we share.

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@kristiemlove

Is it the fluid extract for Adults and Children or the Honey syrup herbal supplement? Ordering now along with the cough drops.

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@kristiemlove … sorry for the delay!
The great Broncolin honey syrup with Propolis . All natural. Too, the cough drops are great!
Jan in Fl

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@windwalker

@sounder27, It sounds like your GERD may be the culprit behind your lung issues, which in turn is hampering your ablation. Have you had time toread up on how to control acid reflux?

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@windwalker … Wanted you to know Barb, Eva and I met for lunch today near Orlando. It was great to meet face to face with other MAC/Bronc
patients. If you live near Leesburg, Clermont , Orlando contact me @janovr. We plan to meet again in several months for lunch
and share new ideas. Jan

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@janovr Jan, that is wonderful! At least there is one silver lining to this disease; we are creating new friendships. I live in S,C., but if I ever get down your way again, I will look you up. I have one member, @nannette, who lives 40 mins from me. We see each other occasionally and do lunch. There is a member visiting my area for a winter vacation that I plan to meet as soon as she and I are over our colds. It is so nice to be with other people who understand our limitations. Just yesterday, I met with a long time friend of mine yesterday, and had to explain my limited energy AGAIN to her. She acted annoyed that I couldn't just pack up my house and move all at once. Well, I am annoyed with her that she has to keep asking me why I don't have energy. Geeze!

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@janovr

@windwalker … Wanted you to know Barb, Eva and I met for lunch today near Orlando. It was great to meet face to face with other MAC/Bronc
patients. If you live near Leesburg, Clermont , Orlando contact me @janovr. We plan to meet again in several months for lunch
and share new ideas. Jan

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@janovr What is Eva's @name? I don't know which member she is. Thnx!

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@janovr

@kristiemlove … sorry for the delay!
The great Broncolin honey syrup with Propolis . All natural. Too, the cough drops are great!
Jan in Fl

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@kristiemlove Did you get the Broncolin at a regular drug store or do I need a prescription?

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@windwalker

@janovr What is Eva's @name? I don't know which member she is. Thnx!

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@windwalker
Eva Ritt

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@janovr I didn't mean her real name, but the one she uses to chat on our site. The name after the @.

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@katemn Hello! New to the site. Just read you were on 5 antibiotics for 18 months back in 2011! What is your diagnosis since then? Are you keeping the MAC under control? I just started on the 3 antibiotics for 12 months regime currently in vogue and I hate to think this will have to be repeated every few years for the rest of my life. I am the typical NTM (nontuberculous mycobacterial lung disease) patient, having had previous pneumonias, have bronchiectesis, am over 65, a woman who lives near the coast and loves to garden – and breathe the air, darn it! Diagnosed with MAC 10 years ago but was put on only 1 antibiotic for 4 months. Since then, whenever I have a flare-up, no one until now has said go to the Infectious Disease Consultants and get on a the 3 antibiotic regime! Mayo clinic doc said if I start coughing excessively to take Levaquin. Ended up taking almost monthly! Not good idea. VISIT: ntmfacts.com They say a delay in treating with the recommended therapy could lead to severe consequences. In a study of 40 NTM patients who did not receive treatment due to minimal symptoms, 97.5% experienced disease progression over an average of 6 years! This is radical! This is what happened to me!! I was even hospitalized with double pneumonia 3 years ago and all they did was fill me with every antibiotic they could try…never setting me up for the right therapy.
Maybe my doctors thought it was just not been bad enough, but I think it's a mistake not to grab it by the horns at the outset. Many gals posting here seem to be trying everything else but. They shouldn't wait. Get your bronchoscopy!! Be patient, MAC takes min or 6 weeks to grow. My samples were sent to the National Jewish Hospital in Denver – one of the only hospitals to really specialize in the disease. Read their site also!
The regimen doesn't come without side affects:
1. Azithromycin could cause some hearing loss. Get tested at the outset to establish a base line.
2. Ethambutol could affect color vision. Get tested regularly for that too.
3. Antibiotics are known to kill all bacteria, bad and good. Vital to take a strong probiotic the night before.
4. Monitor closely – monthly cultures of sputum
5. Sign up for updates for the latest information at NTMFacts.com/Impact
I am banking on getting rid of the bacteria this year. But may take two! That's ok…don't want to cough anymore!! Good luck everyone!

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@hsletter

@katemn Hello! New to the site. Just read you were on 5 antibiotics for 18 months back in 2011! What is your diagnosis since then? Are you keeping the MAC under control? I just started on the 3 antibiotics for 12 months regime currently in vogue and I hate to think this will have to be repeated every few years for the rest of my life. I am the typical NTM (nontuberculous mycobacterial lung disease) patient, having had previous pneumonias, have bronchiectesis, am over 65, a woman who lives near the coast and loves to garden – and breathe the air, darn it! Diagnosed with MAC 10 years ago but was put on only 1 antibiotic for 4 months. Since then, whenever I have a flare-up, no one until now has said go to the Infectious Disease Consultants and get on a the 3 antibiotic regime! Mayo clinic doc said if I start coughing excessively to take Levaquin. Ended up taking almost monthly! Not good idea. VISIT: ntmfacts.com They say a delay in treating with the recommended therapy could lead to severe consequences. In a study of 40 NTM patients who did not receive treatment due to minimal symptoms, 97.5% experienced disease progression over an average of 6 years! This is radical! This is what happened to me!! I was even hospitalized with double pneumonia 3 years ago and all they did was fill me with every antibiotic they could try…never setting me up for the right therapy.
Maybe my doctors thought it was just not been bad enough, but I think it's a mistake not to grab it by the horns at the outset. Many gals posting here seem to be trying everything else but. They shouldn't wait. Get your bronchoscopy!! Be patient, MAC takes min or 6 weeks to grow. My samples were sent to the National Jewish Hospital in Denver – one of the only hospitals to really specialize in the disease. Read their site also!
The regimen doesn't come without side affects:
1. Azithromycin could cause some hearing loss. Get tested at the outset to establish a base line.
2. Ethambutol could affect color vision. Get tested regularly for that too.
3. Antibiotics are known to kill all bacteria, bad and good. Vital to take a strong probiotic the night before.
4. Monitor closely – monthly cultures of sputum
5. Sign up for updates for the latest information at NTMFacts.com/Impact
I am banking on getting rid of the bacteria this year. But may take two! That's ok…don't want to cough anymore!! Good luck everyone!

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@hsletter Hi Helen, I just read your post. I do not post that often myself, but sadly I do know that the founder of this site, @katemn, has passed away, I think it was last year. I am one of those patients with MaIC that has known I have had it for a least 8 maybe 10 years. I have managed up till now to stay very active, have never had pneumonia, but bronchiectasis is getting worse, and I have lots of mucous production and coughing. I was due to start the big 3 mid Jan, but had to once again postpone starting because of a serious shoulder issue that my require surgery. (I have bilateral shoulder replacements and now one of them has failed and seized up, and I may reguire a revision). I just could not face going through major surgery with my system run down with 3 toxic antibiotics, and opening me up to being more susceptible to surgical infection in the joint.
I will start the journey of the big 3 as soon as I get this shoulder sorted out, because I like you are keen to try to get rid of this nasty ongoing thing. My biggest fear is the fear that the big 3 are so toxic and may not even work, and once on, we are on these and other antibiotics for life. Good luck with your journey. It seems like there are more and more of us, 65 plus females with Bronchiectasis and Maic. Keep posting, take care. Jo.

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@joanney

@hsletter Hi Helen, I just read your post. I do not post that often myself, but sadly I do know that the founder of this site, @katemn, has passed away, I think it was last year. I am one of those patients with MaIC that has known I have had it for a least 8 maybe 10 years. I have managed up till now to stay very active, have never had pneumonia, but bronchiectasis is getting worse, and I have lots of mucous production and coughing. I was due to start the big 3 mid Jan, but had to once again postpone starting because of a serious shoulder issue that my require surgery. (I have bilateral shoulder replacements and now one of them has failed and seized up, and I may reguire a revision). I just could not face going through major surgery with my system run down with 3 toxic antibiotics, and opening me up to being more susceptible to surgical infection in the joint.
I will start the journey of the big 3 as soon as I get this shoulder sorted out, because I like you are keen to try to get rid of this nasty ongoing thing. My biggest fear is the fear that the big 3 are so toxic and may not even work, and once on, we are on these and other antibiotics for life. Good luck with your journey. It seems like there are more and more of us, 65 plus females with Bronchiectasis and Maic. Keep posting, take care. Jo.

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Hi Jo
I know several women who took the big three and they are off the antibiotics. If this is a private post I will send you my email so I can tell you more. Just cut and paste your note you just sent me. I think I can help you.

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@spencersok

@kristiemlove Did you get the Broncolin at a regular drug store or do I need a prescription?

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@spencersok I bought them on amazon. Received 'Next Day'

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