(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.

lindam272 | @lindam272 | May 30, 2018

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

Terri, Do you remember what the eligible function scale was? Linda

nick52 | @nick52 | May 30, 2018

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

@windwalker good info Terri!

Terri Martin, Volunteer Mentor | @windwalker | May 30, 2018

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

@lindam272 No, Linda, I do not. I am sorry, but that was too many years ago.

Jane S. Brown | @macjane | May 31, 2018

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

You always have great answers. I feel guilty for my depression when I see how positive others can be. Jane Brown

Jo Ann K | @jkiemen | May 31, 2018

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

I feel your pain. I am right there with you.

boomerexpert | @boomerexpert | May 31, 2018

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

@macjane that's the depression talking...don't listen...

Terri Martin, Volunteer Mentor | @windwalker | May 31, 2018

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

@macjane, Please don't feel guilty about being depressed. You are entitled to your feelings. It may be that you are still mourning the past, when you weren't fighting disease. I am pretty sure that all of us have felt the same way at some point, and still do. It gets old trying to fight a tenacious disease. It absolutely wears you down. All we can do is hang in there and keep fighting. Don't give up. I am proof that one can get better to a point that you can enjoy life again. Remember, five years ago I was told to plan for a double lung transplant. You should see me now!

toni68 | @toni68 | May 31, 2018

In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)

@nick52 I eat all of these foods,no wonder why I feel like I'm so very sick 24/7 Thank You Toni

toni68 | @toni68 | May 31, 2018

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

@tutti Idon't know if it goes by state ,but my husband did that and they made him wait 2 yrs.we live in louisiana I also know some that went to soc. sec. and fought it, and won. I would apply for it . Toni Ann

Jo Ann K | @jkiemen | May 31, 2018

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

I do feel like I am in mourning. I miss not having to think about MAC every day. Being on the meds makes it harder to ignore. I had my post 6 months on meds CT yesterday and get results tomorrow. I have been panicking the last 2 weeks and am just a basket case. I am afraid he will tell me its not working. He is not very subtle or eases into stuff. Prayers would be welcome.