(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.

anniepie | @anniepie | May 25, 2021

In reply to @sueinmn "Not that I am aware - it doesn't seem to have any effect on my BP..." + (show)

Thanks Sue. One piece of good news!

heathert | @heathert | May 25, 2021

In reply to @anniepie "An open question to anyone who has been on Clofazimine meds for MAC/MAI: Did you ever..." + (show)

@anniepie I got the staining from the big 3, so I go to the dental hygienist every 6 months and she cleans it off for me. Take care Heather

anniepie | @anniepie | May 26, 2021

In reply to @heathert "@anniepie I got the staining from the big 3, so I go to the dental hygienist..." + (show)

Thanks Heather @heathert -- I hope the staining with Clofazimine is no worse than Rifampin.
Hugs to you
Annie

bnthorson | @bnthorson | May 26, 2021

In reply to @anniepie "An open question to anyone who has been on Clofazimine meds for MAC/MAI: Did you ever..." + (show)

I have only been on Clofazimine for 3 months. My skin is a slight bit darker but have not noticed my teeth darkening. I do have a number of crowns. I’ll keep you posted.

heathert | @heathert | May 26, 2021

In reply to @bnthorson "I have only been on Clofazimine for 3 months. My skin is a slight bit darker..." + (show)

@bnthorsen, mine darken between the teeth, it is not very visible at first, my hubby notices it more than me. Take care Heather

heathert | @heathert | May 26, 2021

In reply to @anniepie "Thanks Heather @heathert -- I hope the staining with Clofazimine is no worse than Rifampin. Hugs..." + (show)

@anniepie it is not too bad, more annoying, it comes between the teeth. Take care Heather

bnthorson | @bnthorson | May 26, 2021

In reply to @heathert "@bnthorsen, mine darken between the teeth, it is not very visible at first, my hubby notices..." + (show)

Thanks for the heads up! Take care!

janeta | @janeta | May 26, 2021

In reply to @bnthorson "I have active MAC and Bronchiectasis currently on meds, big 3 plus clofazamine. I use inhaler,..." + (show)

Do you mind being specific about which meds you use in your inhaler and neb? There are a number of meds that come in either of those forms. thx!

bnthorson | @bnthorson | May 27, 2021

In reply to @janeta "Do you mind being specific about which meds you use in your inhaler and neb? There..." + (show)

I use albuterol in my inhaler and 3% saline in my nebulizer 2x day . I also use the vest twice daily after the nebulizer and inhaler. Don’t know why I am only using the lower percentage of saline. I will ask my pulmonologist when I see him next week.

anniepie | @anniepie | May 27, 2021

In reply to @bnthorson "I have only been on Clofazimine for 3 months. My skin is a slight bit darker..." + (show)

Thanks for your reply @bnthorson. Yes the Clofazimine suntan, laugh -- glad it is only that on my skin too.
I've been on Clofazimine for around 18 months now. The teeth stain has begun to be more noticeable in the past 6 months,
I think I will get a new mouth/teeth mold made so I can use special whitening crean from my dentist -- it's worth a try. I will let you know how it goes.
(PS. It's a good idea to get an ECG / EKG of your heart rhythms after taking Clofazimine for around 12 months, It gets rid of potassium and magnesium from the body and that affects some people's QT heart rhythm).
Good luck

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