(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 | Dec 28, 2017

No doubt I'll be there someday...perhaps soon...sigh...

Terri Martin, Volunteer Mentor | @windwalker | Dec 29, 2017

In reply to @boomerexpert "No doubt I'll be there someday...perhaps soon...sigh..." + (show)

@boomerexpert , Let's hope it's not soon! Are you feeling alright?

Terri Martin, Volunteer Mentor | @windwalker | Dec 29, 2017

In reply to @joan912 "Interesting article on NTM : https://pharmaphorum.com/views-and-analysis/nontuberculous-mycobacteria-emerging-public-health-problem/" + (show)

@joan912, Hi Joan! That was an interesting article. I haven't looked up the treatment guideline of the British Thoracic Society yet. The article seemed a little oxymoron to me when it states there should be guidelines to adhere to in treatment plan, but then states doing gene sequencing in order to do individualized treatment. That is what I hate about this disease! Nobody can agree on the proper way to treat this! I feel like I cannot guide anyone in the way of what treatment they should get, (not that I should be doing that), because I don't even know myself. It is so frustrating! Also, I wondered if Japan's MAC incidence is highest because they use public baths? I was there 7 yrs ago and went to a public bath, and they had like seven or eight different kinds of baths to get into, and you could go from tub to tub. Just a thought. Thank you for contributing that article. Did you look up the British treatment guidelines?

joan912 | @joan912 | Dec 29, 2017

In reply to @joan912 "Interesting article on NTM : https://pharmaphorum.com/views-and-analysis/nontuberculous-mycobacteria-emerging-public-health-problem/" + (show)

No, I haven't looked up the guidelines. I'd be curious to see what they are.

boomerexpert | @boomerexpert | Dec 29, 2017

@windwalker yep...feeling good! And you?

joan912 | @joan912 | Dec 29, 2017

Though this is treatment for TB, I can see that it would have usage in treating MAC: http://indianexpress.com/article/lifestyle/health/new-substance-may-help-combat-tuberculosis-5004271/

irene5 Irene Estes | @irene5 | Dec 29, 2017

In reply to @joan912 "Though this is treatment for TB, I can see that it would have usage in treating..." + (show)

That would be wonderful! Thank you for sharing that info.

heathert | @heathert | Dec 29, 2017

Hiya I have also read about 6% acetic acid for 20-30mins for some of the mycobacteria but not others,I guess we just need to make sure the information is from an experiment on a reputable site. So much info out there, hard to know which is correct, to be on the safe side I will go for 10 for now. However I also am concerned about killing all the good bacteria which keep the bad in check. Confusing!

Jo Ann K | @jkiemen | Dec 29, 2017

In reply to @joan912 "Though this is treatment for TB, I can see that it would have usage in treating..." + (show)

Wow, now we have to wait until it gets through clinical trials. I hope that they start soon and put in on a fast track. We all need to keep watching for these things and keep telling out MD's

nick52 | @nick52 | Dec 31, 2017

In reply to @heathert "Hiya I have also read about 6% acetic acid for 20-30mins for some of the mycobacteria..." + (show)

If you are worried about bacteria take probiotic to replenish your “flore bacterienne” it is a safe way. To be safe take it few hours in between treatment. Check Dr Balch book!