(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.

pfists | @pfists | Feb 7, 2019

In reply to @boomerexpert "@irene5 MAC TB is found in birds but there is no evidence is can be transmitted..." + (show)

The first questioned my pulmonologist asked me when I presented ill is if I had been around birds or hot tubs trying to determine the source of my illness. Then I had a scope that showed what I did have. There are numerous diseases spread from bird droppings. Histoplasmosis is one of them and others ones too. Maybe not MAC
But people with Bronchectasis need to be aware of the numerous sources of disease.
I had Narcodia twice from soil, pseudomonas several times from I assume water. I'm not sure of the source of the Mycobacteria Abcessus that I had for a year and half. But for myself I know I need to be careful because of all the different things that have shown up in my lungs.
Take care all!
Shari

alleycatkate | @alleycatkate | Feb 7, 2019

In reply to @boomerexpert "@cindyrue @america one doc's opinion on birds is not overwhelming evidence of a problem...many docs have..." + (show)

@boomerexpert Straight from the heart!! Once an animal advocate, always one! Yah. I so agree about serious consideration when contemplating getting “rid” of a family pet on just hearsay or possibly bad advice. I have recieved completely erroneous advice in the past from Doctors that were uninformed.

pfists | @pfists | Feb 7, 2019

Yes @alleycatkate @boomerexpert
@america
Consider the source of Dr advise! Hopefully you have a great Dr you trust that you can check with.
Then do your own due diligence and check it out with TRUSTED sources on the internet.

Shari

america | @america | Feb 7, 2019

I made a lot of changes in my home since I was diagnosed. I love hot tubs and hot showers! I love the plants in my home! I love to entertain and go out to dinners! I love having all my grandkids and kids over! I love to to go on cruises and vacations! But for the past year I am more of a home buddy. I gave up all my house plants, stop taking hot showers and don’t get in a hot tub. Don’t and can’t entertain or going out to dinners. I can’t go on a cruise or take much of a vacation. I can’t have my family over because the kids are always carrying something like a cold or virus. But I’m happy to have some really good day! Some may not be good but I try to make the best of what I can do. I think getting Pseudomonas was a horrible experience because it fast growing and it made me so sick. I am doing much better and I think the the Tobramycin has knocked that out. I will know better next month. I hope and pray that I will be tested negative. But hope is good. About my bird I will let everyone know what my doctor knows about it. But for now one day at a time. Hugs Rita.

anniepie | @anniepie | Feb 8, 2019

In reply to @pfists "@alleycatkate America I think the best advise is to run it by your Dr. like you..." + (show)

@pfists @america Yes the research literature on environmental sources of MAC etc show some animals and birds can be vectors carrying the disease -- but this is UNCOMMON. It is much more likely that we got our MAC, MAI, Abscessus from breathing in steamy water from showers, or from tap water or potting mix, sphagnum moss or other soil -- wet or dry, and occasionally from house dust. But it is a lot less common to get it from animals or birds and the animal often shows signs of sickness.
So love the bird -- it is most likely to be fine -- but with normal hand washing and maybe don't kiss it.
Hugs from Annie

Terri Martin, Volunteer Mentor | @windwalker | Feb 8, 2019

In reply to @boomerexpert "@irene5 MAC TB is found in birds but there is no evidence is can be transmitted..." + (show)

@boomerexpert , @america, @pfist, @alleycatkate @irene5, According to the link that @pfist posted from the CDC; birds can transmit mac to humans. If you go to that link and click on 'Diseases' it comes up. I would think it would be some birds in the wild.

Terri Martin, Volunteer Mentor | @windwalker | Feb 8, 2019

In reply to @sueinmn "Pop, and nasal secretions. After much exploration I believe my MAC came from soul contaminated by..." + (show)

@sueinmn Hi. I had wanted to get chickens myself, but won't because I fear their droppings.

Terri Martin, Volunteer Mentor | @windwalker | Feb 8, 2019

In reply to @pfists "The first questioned my pulmonologist asked me when I presented ill is if I had been..." + (show)

@pfist I had a client once who kept and bred numerous birds in his home. They were allowed to fly freely about the house at all times. He had many diff species of birds. He developed a severe lung infection that he couldn't shake and his GP couldn't figure out why it wouldn't clear up. I suggested that he see a specialist and mentioned it may be from all of the birds. He couldn't believe that that could be a possibility.

irene5 Irene Estes | @irene5 | Feb 8, 2019

In reply to @windwalker "@boomerexpert , @america, @pfist, @alleycatkate @irene5, According to the link that @pfist posted from the CDC;..." + (show)

Interesting!

america | @america | Feb 8, 2019

In reply to @windwalker "@boomerexpert , @america, @pfist, @alleycatkate @irene5, According to the link that @pfist posted from the CDC;..." + (show)

Hi guys we got Zeus our bird form Pet Smart! He was a baby and had all his shots and was never in the wild. But I read when they can get you sick if they’re sick. It’s good until we get to the bottom of it all. I went on my last cruise in 2017 and I spent one hour in the morning and one hour in the evening in the hot tub and loved it. But I started feeling more and more tired and sick! Then I found this group and got so much knowledge of my disease and with Terri, windwalker’s help I got to Mayo last year. That’s when I found out I had pseudomonas:( and must have been the tot tub. But I am doing a lot better now with the Tobramycin even though I had to stop using it for now. After all my testing is done in March I’ll know for sure. With all the help and information from this group I am feeling quite positive about life and where we go on this journey. Much love to all Rita.