(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.

nick52 | @nick52 | Apr 29, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

@egayle187. That confirm exactly what my pulmonary specialist said. Acid stomach can cause Bronchiectasis. By taking care of the acid stomach you are also reducing the risk of damaging your lungs and catching MAC. I feel a good part responsible for rhe stomach

acid is the liver either because it is congested or because you had your gallbladder removed. Eating an acid free diet helps the liver to digest better the food we put in our stomach make it better or worst. Milk Thistle is a good detoxifierand I take some

after an acid meal for control and the probiotic from Dr Ohirrah also helps my digestive system and I am able to eat more acid food now but with moderation. When I stop Dr Ohirra probiotic symptoms (mucus) come back. Thanks for sharing , i am glad to hear

that you feel much better and you seem to be in control. Those organism like the MAC live and nourishes themself in an acid environnement. The same with candidas. Have a lovely Sunday! Nick52

Terri Martin, Volunteer Mentor | @windwalker | Apr 29, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

@rmason, Hi Roxanne. I am so glad that some folks stepped up to answer your question. I couldn't contribute as I have not ever done 'The Big 3 ' antibiotic treatment. I was so glad to hear that your sputem test was done properly i.e. the three consecutive day samples. Hardly any doctor gets that right. Where did you see a doctor that instructed you to get three samples?

Terri Martin, Volunteer Mentor | @windwalker | Apr 29, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

@rmason, Roxanne, can I ask what state you live in and what your occupation is/was?

lauriefrancis | @lauriefrancis | Apr 29, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

@nick52 how do you take milk thistle?

rmason | @rmason | Apr 30, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

It was a pulmonologist at Mercy Springfield MO

rmason | @rmason | Apr 30, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

I am a registered dietitian and certified diabetes educator-work full time in a Peds endocrinology clinic

Jo Ann K | @jkiemen | Apr 30, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

What were the daily meds that you had to go onto?

Jo Ann K | @jkiemen | Apr 30, 2018

In reply to @josephene "Hi...I am just butting in here - but have been on the big 3, plus IV..." + (show)

What did you do after that?

rmason | @rmason | Apr 30, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

Rifampin,Zithromax, and ethambutol

Jo Ann K | @jkiemen | Apr 30, 2018

In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)

That is what I am currently taking, on month 6.

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