(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.

Katherine, Alumni Mentor | @katemn | Jun 23, 2016

In reply to @heathert "Hi mimi68 was there any new information for us?" + (show)

Hello Mimi,
If anyone hears where we can get a written transcript I'd really be interested in this! I am one of those "Visual Learners" so that would be most helpful for me! Best to all! Katherine

Katherine, Alumni Mentor | @katemn | Jul 1, 2016

Hello All, just a heads up .. I will be on a trip from July 11 and return July 25. I would ask you to keep an eye out for any new person posting and give them any help and support you possibly can .. AND of course continue to give each other the wonderful help and support you already do! Sending you all a Big Hug .. and don't forget .. I'll be here until July 11!

heathert | @heathert | Jul 4, 2016

In reply to @colleenyoung "Re Clinical trials in MAC, I found this one that is being conducted by Principal Investigator..." + (show)

Sorry to hear that Paula but great that your old MAC has deminished. Have you been on the same 3 antibiotics for the last 8 years or have they been changed? Hope your doc can gets this sorted asap for you.

Sophie | @sophie1019 | Jul 7, 2016

In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)

I was diagnosed with MAC on july 5 2016. I dont feel bad at all but kinda freaked out regarding the side effects of the meds. Cried and cried until spmeone prayed for me and i know i have to think positive to be healed...

Katherine, Alumni Mentor | @katemn | Jul 7, 2016

In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)

Welcome Sophie, I am glad you have found our Forum .. I feel confident you will find a LOT of good information if you can find the time to read through the posts going back to the beginning. Plus you will find many kind supportive people who are here walking the same journey you are on .. we are all in this together. Personally I have been off the antibiotics since May 2014 . . so as you said .. THINK POSITIVE! You have a great attitude .. you just keep it up and you will be just fine! Sending you a hug! Katherine

JanetJ | @justjanet | Jul 7, 2016

In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)

Hi Sophie, You are right to think positive! I was diagnosed with MAC and Bronchiectasis in beginning of March and didn't see a pulmonologist until mid-April. I also feel fine at this point so I probably won't be starting treatment at this time but I will discuss it with Doctors that specialize in this in August when I go to a clinic here that treats just Bronchiectasis and also MAC or NTM. I think the most important thing you can do is research. Its scary at first but focus on the success stories - there are many of those too. And by success, I mean learning to live with this disease, to accommodate it, to work around it. And find doctors in your area that know a lot about this. You need an infectious disease specialist along with your pulmonary doctor. What state are you in? Katherine is absolutely right - read all the past posts on this board. You will learn so much. You are not alone in this! Hang in there. Janet

Sophie | @sophie1019 | Jul 11, 2016

In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)

Did you have any side effects with your meds? Any eye problems????

Lisa Y | @tutti | Jul 12, 2016

In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)

I haven't started the meds yet. My Dr told me it could affect my hearing but, it shouldn't bother my eyes. What mycobacterium do you have? Do you have abscessus?

Sophie | @sophie1019 | Jul 13, 2016

In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)

No I don't have that. Just the non tb mac. So far I'm doing okay on the meds. Had a little diarrhea, which the doc told me about but that went away. My doc told me that any side effects should occur within the 1st 30 days, if any, then everything should go smooth.<br><br><br><br>

mimi68 | @mimi68 | Jul 13, 2016

In reply to @mimi68 "Thank you for your response and concern. I wondered about another test that would be faster,..." + (show)

I asked my pulmonologist about doing a bronchoscopy and he said he didn't want to as it was too invasive. I have finally been able to get 3 sputum tests into the lab, the last one being today. I should have the results around the beginning of October. I still have no symptoms, and hope that continues. I can see from reading many of the posts that there are lots of people really suffering from the disease and the treatment, and I certainly feel for them all. I hope a better and more user-friendly treatment will be found soon. If my tests come back positive, I will see an infectious disease doctor who is familiar with MAC for a 2nd opinion before going on the treatment.