(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.

Kay Strand | @kaystrand | Dec 28, 2016

Annie
I started the big 3 in late July and continued my BP meds. I take 4 as I've had high blood since I was 20 and it's through the roof without meds. The Rifampin makes it go up, so I'm constantly monitoring. I have to exercise and gets lots of sleep. I've lost weight since I started the meds, nausea on and off. I TRY to eat lots of veggies (had boiled dinner and salad for dinner- 7 servings in one meal).

What were u taking for MAC ? Maybe it didn't absorb w the BP Med? Ask them, as u should be able to stagger all your meds and not take together. It's a pain to take all this stuff, it bothers me if I let it. But the choice for me is having cavitary MAC grow, and that keeps me on track taking my drugs;-)

Take care Annie (that's my daughter's name! She's an angel.

Kay S

Terri Martin, Volunteer Mentor | @windwalker | Dec 28, 2016

In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)

Hello! In response to Linda's question about elevation being a factor in lung function: Yes, it does. I lived in Tucson, Az. for 20 yrs. I moved to Hilton Head, S.C. in 2012. My oxymeter reading was 90-91 while in Tucson; since the move to sea level, it is now 95-97. -Terri

cathyt | @cathyt | Dec 28, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

I have Mac too. I live in Lake Mary, Fl

Terri Martin, Volunteer Mentor | @windwalker | Dec 29, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

Hello Cathy! Are you having it treated? If so, how? Terri

Terri Martin, Volunteer Mentor | @windwalker | Dec 29, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

I am beginning to think something weird is going on that so many women have MAC these days.

Terri Martin, Volunteer Mentor | @windwalker | Dec 29, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

Hello, I highly recommend the Mayo Clinic in Jacksonville. That is where I go. Terri

cowboy1997 | @cowboy1997 | Dec 29, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Colleen how can I move all of my Mayo Clinic posting to a different email address. So I can read them at a time that suits me? Thanks!

krz4ua | @krz4ua | Dec 29, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

Marie, I am also new to MAC. I am currently taking Azithromycin, Rifampin, and Ethambutol plus I just finished 14 injections (twice a week) of a VERY VERY painful Amikacin Infectious Disease says I will be on meds for 18 months or longer.
Last April (2016) I felt as if I had Pneumonia with a persistent hacking cough (having had it a few times in my life). Primary doc gave me antibiotics but made no recommendations. A week later I was in the emergency room where they took an x-ray then a CAT scan and many blood test. After the CAT Scan they came back and said both upper lungs were filled and made a followup visit with a critical care pulmonary specialist. I live in Trinity, Alabama (no were close to a major MAC research hospital) The specialist scheduled a bronchoscope where he took biopsies and did a saline wash of my lungs. He determined through the biopsy that I have MAC and have been on daily meds since July 2016. He then recommended I see an Infectious Disease specialist who seems to know more about MAC. BUt, one of the resources I have used the most and has answered many of my questions are the forums like this one and the National Jewish Hospital patient portal. Recently they added the MAC conference videos for 2016 these and others have been very helpful for me. My account currently will not let me post the link at National Jewish Hospital search for ntmvideos2016

Colleen Young, Connect Director | @colleenyoung | Dec 29, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Hi @cowboy1997
Here's how to change your email address:
1. Go to Account Settings https://connect.mayoclinic.org/account/
2. Enter the new email address.
3. Scroll to the bottom of the page and click "Save Profile".

While you're on Account Settings page, you may wish to tick the check box that says "ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST." That way you'll only get the information you're interested in.

Colleen Young, Connect Director | @colleenyoung | Dec 29, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

Welcome to the MAC group, @krz4ua. We look forward to getting to know you.
Here is the link to the videos you referred to https://www.nationaljewish.org/ntmvideos2016

New members can post links once they have been a member for 10 days or have made 3 or more posts on Connect. This is a safety precaution to prevent "spammers" on Connect. We look forward to seeing more posts from you on Mayo Clinic Connect.