(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.

america | @america | Mar 8, 2019

In reply to @boomerexpert "@america do you trust your docs implicitly?" + (show)

Yes I do! He’s a great doctor. My only regret is that I’m almost 5 hours away so I can’t be there as often.

boomerexpert | @boomerexpert | Mar 8, 2019

@america great...then he will continue working with you to find meds that are both effective and tolerable!

Sue, Volunteer Mentor | @sueinmn | Mar 9, 2019

In reply to @america "Yes I do! He’s a great doctor. My only regret is that I’m almost 5 hours..." + (show)

@america For half of the year, my doc is over 24 hours away. I knew that going in, so we developed a care plan that included getting to know his nurse & check-ins/questions by phone & email with either of them. It is working well for me.

catherine123456 | @catherine123456 | Mar 10, 2019

In reply to @blc "I found this discussion while researching side effects for the meds prescribed for MAC, and possible..." + (show)

The side effects should subside over the next month or so. If not talk to your doctor he can change and try other ones.

america | @america | Mar 10, 2019

In reply to @sueinmn "@america For half of the year, my doc is over 24 hours away. I knew that..." + (show)

Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being closer would help but for now I’ll do what I need to. This disease is lot more complicated than I thought.. this group has helped me in many many ways. But it’s scary having one vocal cord, Sjogrens, RA, restless leg syndrome and so much pain daily. I do get discouraged from time to time. I am thinking about moving because in the Tampa area I think it’s infested with Mac. I would love any thoughts on this. Thanks again Rita.

Sue, Volunteer Mentor | @sueinmn | Mar 10, 2019

In reply to @america "Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being..." + (show)

@america Hi Rita,
I would think very hard about moving to avoid MAC (or any other single germ) - I have now learned that MAC is everywhere, even in our home water supplies, etc. I don't know if anyone could give you a definitive answer on where to go to completely escape it.
Most of us on this group have multiple health issues, the trick lies in figuring out how to live as well as possible without getting sick(er.) I personally focus on what I CAN DO, even if I cannot do it every day, and on staying as strong as possible through good diet, supplements, exercise and attitude. That can be pretty hard on bad days, then I try to give myself a pep talk, or talk to a friend or family member who will buoy me up. Good luck with your treatment for MAC, if the side effects don't subside, or grow worse, get in touch with your doc. Sue

catherine123456 | @catherine123456 | Mar 10, 2019

In reply to @sueinmn "@america Hi Rita, I would think very hard about moving to avoid MAC (or any other..." + (show)

Yes defiantly do not move to avoid MAC. The bacteria that causes it is everywhere and in every home. Mostly only people with a low immune system or other lung problems will develop MAC. My doctor is still trying to figure out where I may have contacted it.

lainey | @lainey | Mar 10, 2019

In reply to @catherine123456 "Yes defiantly do not move to avoid MAC. The bacteria that causes it is everywhere and..." + (show)

I do agree with all the above, but feel I must add a bit to this discussion. I also live in the central Florida area ( not far from Tampa) I have bronchiectasis, asthma, several other health issues but still cleared from MAC since 2016- thankfully. Just for the record - there is absolutely no question that living in a hot, humid environment puts me at a much greater risk for exacerbations. It is a constant struggle to stay healthy here. I go to Colorado and North Georgia as often as is possible. I am careful wherever I am because it is true that you can get MAC anywhere, but it is easier to build up a resistance and maintain a stronger “defense” in better climates than here. I wish it wasn’t like that - all my children live closer to my home in Florida. I am strongly contemplating a move. I am trapped indoors with dehumidifiers, air cleaning devices, double the amount of airway clearance and pulmonary therapy, etc., etc. Just sayin’ ... Don’t rule moving out as a viable consideration

sounder27 | @sounder27 | Mar 10, 2019

In reply to @lainey "I do agree with all the above, but feel I must add a bit to this..." + (show)

Can anyone tell me what pseudomonas is? It has been mentioned several times and I wonder how it is related to Mac and bronchiectas.

sounder27 | @sounder27 | Mar 10, 2019

In reply to @windwalker "@america Oh Rita, I am sorry your news was not good. I hope that your pseudomonas..." + (show)

I’m not sure how to address a question to a specific person here and I sometimes feel like I’m butting in with an unrelated question. But I am wondering if anyone can explain pseudomonas and how it is related to Mac and bronchiectasis.