(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.

boomerexpert | @boomerexpert | Jan 5, 2018

In reply to @boomerexpert "@windwalker yep...feeling good! And you?" + (show)

@windwalker Sounds like you're experiencing some adrenal fatigue (happens when fighting infection and just with age...) - I just started taking the supplement ashwaganda...make sure it's pure and from a reputable source...costs about $20 for a 60 day supply to support adrenal health...take it daily, give it a few weeks, and see how you feel...

nick52 | @nick52 | Jan 5, 2018

In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)

Dear Irene,

With bronchiectasis my doctor recommended “ distilled water” . That is too risky drinking tap water.

Jo Ann K | @jkiemen | Jan 5, 2018

In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)

I have been boiling my drinking water. I have well water. I thought I read in one place well water was less contaminated with MAC than city water. Had to do something with "pink film"

nick52 | @nick52 | Jan 5, 2018

In reply to @boomerexpert "@windwalker yep...feeling good! And you?" + (show)

Dear Windwalker,

Check the spot of the lungs on your feet. It is located on top of your feet above your toe. All the flat area above your toe or the palm of your feet. Have you tried Gonko Biloba for energy?

heathert | @heathert | Jan 5, 2018

In reply to @boomerexpert "@windwalker yep...feeling good! And you?" + (show)

Hi @nick52 what do you look for above your toe in the flat area,, if you have lung problems? Bruising?

nick52 | @nick52 | Jan 5, 2018

In reply to @boomerexpert "@windwalker yep...feeling good! And you?" + (show)

Ashwaganda is also recommended in Dr Balch book. He says it is medically used for stress, immune support, memory, enhancement, ostheoarthritis, aging, anemia and fatigue. It’s an excellent stress hormone balancer” . It is worth to try!