(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

@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 — this forum site automatically goes to the OLDEST message when you sign in. To get the latest 2019 threads in this forum go to the bottom of the 2011 message from @katemn on the front page. On the left side you will see the page numbers. On the right side you will see a box with | oldest to newest | in it. Use the small down arrow in this box to select | newest to oldest | instead. The recent posts will all come up then — your recent post along with recent messages from other people.
Good luck with your treatment. You are right, the longer people with coughing and phlegm symptoms leave this illness untreated the worse it usually gets (as that study showed — 95% of cases!). So, in my experience anyway, it's best to get onto the treatment as early as possible. The antibiotics do have risks, and do need to be monitored, but most of the common side effects can be managed. I agree it's essential to take a strong broad spectrum probiotic every day, but to work properly it needs to be taken with high fibre powder such as Inulin powder — you can order this online. We also need to continue with strong probiotics even after we finish the 1 or 2 years of antibiotics to help our weak immune systems. Again, all the best to you, Annie

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@america

Hi Janice! I live in the Tampa area! I am going to Mayo Clinic next week. I will let everyone know how my testing go. I hope I will be tested negative but we’ll see. I wish you well. Rita

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@america hey, good luck Rita!

Liked by america

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Hello! I'm form Quebec sorry i don't write well English….but i try.. i have Mac for 1 years and i just began take 3 antibiotics at m november after one month i stop to take Clarithromycin because the lever ensymes were to high…i still waiting for other antibiotics…
But the thing i want share is my mother went to the hopital because she had pulmonary embolism " and the doctor find the mycobacterium like me
They told us it is no contagious…it is true… it is very special both having the same bacteria…
Do you known persons have the same at the family's
Thank you

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@lisesoleil

Hello! I'm form Quebec sorry i don't write well English….but i try.. i have Mac for 1 years and i just began take 3 antibiotics at m november after one month i stop to take Clarithromycin because the lever ensymes were to high…i still waiting for other antibiotics…
But the thing i want share is my mother went to the hopital because she had pulmonary embolism " and the doctor find the mycobacterium like me
They told us it is no contagious…it is true… it is very special both having the same bacteria…
Do you known persons have the same at the family's
Thank you

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@liseleleil this bacteria is environmental and no doubt family members are exposed to the same things. It is everywhere … air, water and soil . If your immune system is compromised you are more susceptible . I had pneumonia 3 times in a 12 month period. Sputum tested after the 3rd time!…found this bacteria.😩 Hang on!

Liked by Brenda R.

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Hi, thanks i known the bacterias are in environmental but it is special then my mother got the sames of me after one year diagnosis me. She have 80 years old and she don't want the traitements because she see me how i feel badly somes times…but she will meet a doctor who will help her to change the idea…i hope…we will see…
Thanks again.

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@lisesoleil

Hi, thanks i known the bacterias are in environmental but it is special then my mother got the sames of me after one year diagnosis me. She have 80 years old and she don't want the traitements because she see me how i feel badly somes times…but she will meet a doctor who will help her to change the idea…i hope…we will see…
Thanks again.

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@lisesoleil I could not take the meds. Tried for 3 months and lost 40 lbs. That was 4 years ago.
so far so good!
Jan

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@lisesoleil

Hi, thanks i known the bacterias are in environmental but it is special then my mother got the sames of me after one year diagnosis me. She have 80 years old and she don't want the traitements because she see me how i feel badly somes times…but she will meet a doctor who will help her to change the idea…i hope…we will see…
Thanks again.

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@lisesoleil Hi there. You can click on my picture and read about my treatment plan. There are other inhalable medications available now also. Be sure that both you and your mom have a suseptibility test done to see what will work on your particular strain of mac.

Liked by anniepie

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@sounder27

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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@sounder27 I know what you mean. I remember when I first found this site. It was a Godsend. I have never known such a wonderful group of people as the members we have here.

Liked by america, yaggi01

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@lisesoleil

Hi, thanks i known the bacterias are in environmental but it is special then my mother got the sames of me after one year diagnosis me. She have 80 years old and she don't want the traitements because she see me how i feel badly somes times…but she will meet a doctor who will help her to change the idea…i hope…we will see…
Thanks again.

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@lisesoleil Hi, Lise – My husband & I both have bronchiectasis from different causes, but only I have contracted MAC. He got a different infection. Our daughter also has bronchectasis, but currently no lung infection.
We are a family with 3 generations that have bronchiectasis – our University will be studying my daughter, brother, husband and me to see if they can identify any genetic link.They say it is unusual, but not totally unheard of.
I am tolerating the 3 antibiotics, but when my mother had MAC in her 80's she was unable to take any of them. The infection is very slow to grow in most people, so hers was not treated, and it did not cause her death a few years later – it was from a different illness.

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Thanks you, for sharing your story….it helps me to understands…

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@sueinmn

@lisesoleil Hi, Lise – My husband & I both have bronchiectasis from different causes, but only I have contracted MAC. He got a different infection. Our daughter also has bronchectasis, but currently no lung infection.
We are a family with 3 generations that have bronchiectasis – our University will be studying my daughter, brother, husband and me to see if they can identify any genetic link.They say it is unusual, but not totally unheard of.
I am tolerating the 3 antibiotics, but when my mother had MAC in her 80's she was unable to take any of them. The infection is very slow to grow in most people, so hers was not treated, and it did not cause her death a few years later – it was from a different illness.

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My twin sister and i both have this they said mine was gone a year ago after using antibitics for 18 months now they saiy it hss returned i refise to use the antibitics sgain as i gained 40 piunds using it it doesnt cure anything and creates stomach issues also im lookimg for an alternate treatment

Liked by Brenda R.

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@america

Hi Janice! I live in the Tampa area! I am going to Mayo Clinic next week. I will let everyone know how my testing go. I hope I will be tested negative but we’ll see. I wish you well. Rita

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@america Hi Rita! How did your Mayo visit go?

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Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again… I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days …. I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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@america

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again… I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days …. I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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@america Oh Rita, I am sorry your news was not good. I hope that your pseudomonas goes away as quickly and easily as mine did. Hang in there Rita, conquering mac takes a long time. Sending you a BIG cyber hug !

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@america

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again… I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days …. I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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I have thst also is it part of mac how are they treating u?

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