(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.

jillnc | @jillnc | Mar 21, 2017

In reply to @katemn "@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us..." + (show)

Okay I added a discussion, hopefully I did it correctly 🙂

beatitnow | @beatitnow | Mar 21, 2017

Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on Clarithromycin last week, and I started on Rifampin this week. (@katemn...I started on this one because I have to get my baseline vision test this week before I start Ethambutol). So, my first day of Rifampin was yesterday (Monday), I took it at 6:00am. At 1:15 am this morning (Tuesday) I had a pretty bad headache...I managed to get a little more sleep, but I still have the headache this morning. Questions:

1) Has anyone else had a headache as a side effect of Rifampin?
2) If so, did that side effect go away after your body adjusted to the medicine?
3) I just called Walgreens to see if I am okay taking Tylenol or Naproxen. My head usually responds better to Naproxen. They said I was okay taking it short term. Did anyone else have to take either Tylenol or Naproxen for a little while on the 3 drugs?

Thank you for your help, if you can! Amy

jillnc | @jillnc | Mar 21, 2017

In reply to @beatitnow "Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on..." + (show)

I did not have headaches that I recall from the meds. Before and while on the antibotics I did however take 2 extra strength tylenol almost daily for unexplained fevers. I now am able to take 1 aleve (Naproxen I believe) for my fevers instead of the tylenol (and still on the antibotics) I feel it might help me better with any joint aches if I have them. So not sure why the pharmacist seemed to indicate they are okay for short term, unless it's just they are harsh on your stomach.

Colleen Young, Connect Director | @colleenyoung | Mar 21, 2017

In reply to @katemn "@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us..." + (show)

Perfect! Thank you, Jill.

Everyone, see Jill's post here:
- Tips for first dr visit and tests/appt schedules http://mayocl.in/2moDCnT

Add your tips. 🙂

21042 | @21042 | Mar 21, 2017

In reply to @beatitnow "Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on..." + (show)

Hi Amy, this is Kathi. Yes, i did get terrible headaches in the beginning, but they've mostly subsided after about a month. I'm now on the 3 meds about 2 1/2 months. Nausea is mostly gone now , and i did lose about 12 pounds. I find the worst part now is fatigue. I'm not used to it as i've always been so active. My doctor said that may get some better as time goes on. I had a good- sized mass on the right lung two months ago that my doctor suspected was a glob of MAC, but when i got the second CT scan after two months, it was about two thirds gone, so no biopsy is necesary. She and my husband and I are so happy with that news. It sure was a rough ride in the beginning, but my advise to any one is don't give up. It does get better. I'm living proof! Oh yes, I took tylanol for headaches. It worked pretty well. Kathi(21042)

lindam272 | @lindam272 | Mar 21, 2017

Amy, Rifampin is the most difficult of the 3 for me. I did get headaches while taking them and took an Excedrin or 4 ibuprofen to find relief. Typically I took the ibuprofen when some other parts of my body were hurting as well and Excedrin if I only had a headache. I expect the "short term" idea is because of the side effects of taking long term and potential damage to organs. I don't seem to have as many headaches these days - 3 months into taking the meds. Linda

Kay Strand | @kaystrand | Mar 21, 2017

In reply to @katemn "@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us..." + (show)

Jen Taylor good for you. I go to Mayo Mn too. I see Dr Aksimets associate and she's good. There are 5 MAC docs that work w Aksimet. I think they are all on floor 18.There are helpers everywhere (hallways to tell you where you're going) and it's professional and caring. They move you quickly along most of the time. My doc gives me plenty of time with her, I bring written questions. Many usually. Don't be afraid to ask and take notes - you will get great care and the right treatment there. Wishing you the best. Kay Strand

boomerexpert | @boomerexpert | Mar 21, 2017

In reply to @beatitnow "Hi everyone. This is Amy. I wrote a couple weeks ago saying I was starting on..." + (show)

Yes, Aleve is Naproxyn, and anti-inflammatory...I take for my RA...works very well, and not quite as hard on the bod as Tylenol. I also take something for the stomach to keep acid reflux away...

boomerexpert | @boomerexpert | Mar 21, 2017

In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)

It's easy to engage in what's called catastrophic thinking - in your case, that you'll never get better - with all we go through...I know better and it still hits me once in a while. You will improve and eventually get your life back. Knowing that will get you through.

Katherine, Alumni Mentor | @katemn | Mar 21, 2017

@beatitnow, Amy I am so glad you found this wonderful supportive group of people! Aren't they GREAT! @jillnc .. Jill, @21042 .. Kathi , @boomerexpert .. Boomer, @lindam272 .. Linda .. thank you SO much for jumping in to help Amy! YOU are what makes this community what it is .. such a thriving caring place that welcomes newcomers on this MAC journey that we are all on .. so NONE of us have to ever feel so alone again! Helping others as we have been helped .. even if we are just ONE step ahead of them! "Playing" it forward! Hugs to all! Katherine