(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!

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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:
- 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.

Joanne | @joanney | Mar 1, 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!

Jump to this post

@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.

Helen | @helem | Mar 1, 2019

In reply to @joanney "@hsletter Hi Helen, I just read your post. I do not post that often myself, but..." + (show)

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.

kristiemlove | @kristiemlove | Mar 1, 2019

In reply to @spencersok "@kristiemlove Did you get the Broncolin at a regular drug store or do I need a..." + (show)

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

Helen L/Orlando | @hsletter | Mar 2, 2019

In reply to @janovr "@windwalker ... Wanted you to know Barb, Eva and I met for lunch today near Orlando...." + (show)

@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?

Helen L/Orlando | @hsletter | Mar 2, 2019

In reply to @helem "Hi Jo I know several women who took the big three and they are off the..." + (show)

@helem Good to hear there are people off of antibiotics. What regime do they follow now?

Helen L/Orlando | @hsletter | Mar 2, 2019

In reply to @joanney "@hsletter Hi Helen, I just read your post. I do not post that often myself, but..." + (show)

@joanney Thank you for replying to my first post! Such a shame you have to have more shoulder surgery. Hoping you will be able to control the coughing while you are recovering. Perhaps try the Broncolin Honey Syrup with Propolis which has been recommended?

janovr | @janovr | 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 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

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)

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

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

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

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)

@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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