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.

america | @america | Mar 2, 2019
In reply to @janovr "@hsletter Hi Helen, I live in Clermont. Barb lives in Leesburg. Eva did not say where..." + (show)
@janovr

@hsletter Hi Helen, I live in Clermont. Barb lives in Leesburg. Eva did not say where she lived. I have only lived here 8 months so am not very familiar with city names yet. I have heard of Longwood. Haha
We plan to meet again in several months and would love for you to join us!
BTW.... NTM is what we all have too! The cough drops were just the same as the cough syrup name.
Stay well! Jan

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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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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 2, 2019

@america Per your Mayo trip; Break a leg! (as they say in show business).

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bevmac | @bevmac | Mar 2, 2019
In reply to @hsletter "@janovr Hello Jan. Where do you, Barb and Eva live in Central Florida? I am in..." + (show)
@hsletter

@janovr Hello Jan. Where do you, Barb and Eva live in Central Florida? I am in Longwood and would like to meet you all! In meantime, I notice people are referencing various acronyms for our disease: MAC, NTM, MAI, MaIC, etc. I must do more research. My IDC doc, Jennifer Hitt in Altamonte, is calling what I have NTM (Nontuberculous Mycobacterial Lung Disease), which I guess is the general term? btw, they treat 45 patients with this in that office alone! Had no idea it was so prevalent!
I just ordered the Broncolin cough syrup with Propolis, thank you for that! Which of the cough drops do you recommend?

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@janovr. I have a 2nd doctor into natural medicines, apart from the lung specialist. She put me on 400 mls celery juice, 30 mins before food and a supplement called SAMe and a vitamin B12 injection. I stopped coughing within 3 days after 7 months violent coughing. As of a month ago, I am now one month into the 3xantiobiotics and so far no side effects. I am also taking probiotics she prescribed morning and night on days I am not taking antibiotics. I am sleeping well. I am 75, exercising, and snoozing afternoons with a good book. I live on the Gold Coast Australia. My lung doctor is aware of the supplements I am taking.@

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1 reply
migizii | @migizii | Mar 2, 2019
In reply to @bevmac "@janovr. I have a 2nd doctor into natural medicines, apart from the lung specialist. She put..." + (show)
@bevmac

@janovr. I have a 2nd doctor into natural medicines, apart from the lung specialist. She put me on 400 mls celery juice, 30 mins before food and a supplement called SAMe and a vitamin B12 injection. I stopped coughing within 3 days after 7 months violent coughing. As of a month ago, I am now one month into the 3xantiobiotics and so far no side effects. I am also taking probiotics she prescribed morning and night on days I am not taking antibiotics. I am sleeping well. I am 75, exercising, and snoozing afternoons with a good book. I live on the Gold Coast Australia. My lung doctor is aware of the supplements I am taking.@

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@migiziiThat sounds like an interesting way to approach your symptoms especially as your lung doctor seems open to having complentary medicine being involeved😊

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anniepie | @anniepie | Mar 4, 2019
In reply to @hsletter "@katemn Hello! New to the site. Just read you were on 5 antibiotics for 18 months..." + (show)
@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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anniepie | @anniepie | Mar 4, 2019
In reply to @america "Hi Janice! I live in the Tampa area! I am going to Mayo Clinic next week...." + (show)
@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!

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lisesoleil | @lisesoleil | Mar 4, 2019

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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1 reply
janovr | @janovr | Mar 5, 2019
In reply to @lisesoleil "Hello! I'm form Quebec sorry i don't write well English....but i try.. i have Mac for..." + (show)
@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!

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lisesoleil | @lisesoleil | Mar 5, 2019

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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3 replies
janovr | @janovr | Mar 5, 2019
In reply to @lisesoleil "Hi, thanks i known the bacterias are in environmental but it is special then my mother..." + (show)
@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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