(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 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

@ Sophie i wonder if you are taking all this med for the MAC problem. My doctors says a lot of people live with this small organism and are not sick. If you are not sick because of it why would the dr give you all that med. unless I misunderstood what you

said. I had the MAC and never took medication because it wasn’t affecting me that much. Now I do not have it! I am very careful with all medication because they can make you sicker. Nick

nick52 | @nick52 | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

@suzie2017 be careful with medication it can make you sicker. I had the MAC (it is a small microscopic organism that can colonize or multiply. My infectiologue told me that some people can live with it all there lives without being affected some have breathing

problem if it multiply. He didn’t give me any medication because I didn’t have much symptoms. They give med when it is as a last ressource. Be careful. Mayo Clinic seem to treat everyone with the big 3 not my infectiologist. I had the MAC now I don’t. As

he said it can go away. I have used alternative medicine when I had synptoms. Nick

Sophie | @sophie1019 | Apr 17, 2018

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though...

Jo Ann K | @jkiemen | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

I am taking the Meds because they tell me and show me changes. I really hope they work. I feel bad at times when I hear about the relapses. I want to get rid of it and am really trying to follow the directions from Pulmonary. It is nice to hear about success stories too.

jengelage | @jengelage | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

What kind of alternative medicine did you use when you had symptoms. Are there alt meds that are effective??

charlie999 | @charlie999 | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

Hi Nick. Thanks for the positive post. I do not take the big three or other prescription drugs. Alt meds only. Could you please post your successful alt meds. Thanks so very much. Charlie

Suzie2017 | @suzie2017 | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

You have a good attitude. I sure hope they work for you.

Suzie2017 | @suzie2017 | Apr 17, 2018

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

D0 you have COPD?

Suzie2017 | @suzie2017 | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

Nick, I am glad that your Mac went away. My husband has symptoms such as fatigue and weight loss but he has had those symptoms for about 2 years and Mac was just discovered last month.

nick52 | @nick52 | Apr 17, 2018

In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)

@jengelage it depends what my symotoms were Jen if I had shortness of breath I was using Clearlungs to clear my lungs. I also had 2 bronchoscopy in 4 years that I had the MAC . My pulmonory dr did the first one one few years ago when the lab result came with

the MAC and did another one (bronchoscopy) in october 2018 and the result was MAC free! If I have a lot of sputum I was taking Milk Thistle in liquid from Hubnër. I also started a professionnal probiotics from Dr Ohirrah (i feel this was the results for my

MAC or the bronchoscopy can clear the MAC.) All I can tell you is find out exactly what is not working good. I read that Acid stomach can reflux to your lungs ( I do not remember how it is called) he said yes that can affect the lungs so that is why I started

my liver detox with Milk .thistle after every meal. Alternative medicine is not the same for everyone. It depends of your symptoms. I would suggest to read a lotbecause you are the only one who knows your symptoms so read about all our interconnected organs,

liver, heart, lungs and you know your symptoms and try those if it helps. I love Dr Balch book Nutritional Healing. As of today I wouldn’t think I have lung problem cause I feel great! No sputum, no shortness of breath! Thank God! Be positive and believe

in you and the Divin that you will find your solution! I’ll keep you in my prayers