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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@cmcclure the danger is if you also have a pulmonary disease like bronchiectasis then you are more at risk catching bacteria according to my infectiologist. You are exposing yourself to danger for yourself with those patients. The only way you know if you
contracted a MAC is by having a bronchoscopy and they send it to the lab for a perfect result. Sputum is not accurate! If you had a Ctscan then they would know if you have a pulmonary disease/bronchiectasis . It is the only way to find out. Regularly xray
don’t detect that problem. Make sure you were properly diagnosed! Nick
As a teacher I worked with children with aids, hep B, MRSA, and other infectious diseases and skin conditions which included measles, chicken pox, fifths disease, impetigo, staph, lice, and scabies. The only difference is that legally I didn’t have a right to know - .except for the obvious ones. A dear friend told me to look at every child as if he/she had aids and to act accordingly. I too was spit on, bit, and had my beautiful front teeth knocked out. And this was all by angry kindergarteners. The point with MAC is that there is no research to confirm person to person contagion. So basically no one can say you are safe to work with those people. It is your choice when you chose that kind of job. An adoption agency once asked my vet to write a paper saying my GSD wouldn’t bite. He said he couldn’t guarantee even a little teenie dog wouldn’t bite. Point being until there is proven research that MAC is contagious we all have to accept that we have some kind of propensity for it and move on to how we are going to, hopefully, kick it out of us!
Please bare with me ( and my typing) allow me to be more candide. Bacteria are always evolving 20 maybe 30 years ago this would be called TB period. I am looking to set president. Are there no studies that follow health care workers or number them or something that for fact state there is a higher incidence of this infection in this occupation? Seriously narrow it down who has the highest infection rate besides.. HIV or other with comorbidities. If it is the health care worker that doesn't smoke isnt immune comprimised etc then why? For me the answer is simple play at the beach and you will come home with sand in your hai,r pants and shoes ect. play else where and chances of getting of coming home contaminated with sand .. very low. Hell I may have just came up with my argument analogy
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1 ReactionYou are right - and yes we have talked on this forum about incidence of MAC among people in certain professions. I think someone was gathering that data. Getting data for this would be great. But MAC is everywhere. The majority of people have the bacteria because it is everywhere. The difference is when you become infected with it. I spoke about this before I think. You can swab your arm and a friend’s arm and my arm and we will all have many bacteria including staph. But we are not infected with staph. My adopted son on the other hand gets staph infections frequently. MAC is like that. I am infected with it, and it has made me very sick. My fellow teacher friends may have it but aren’t infected with it. I understand what you are saying about bacteria because MAC and TB are both mycobacteria. But TB is proven to be contagious person to person and MAC isn’t. I’d settle for a decent, not so toxic, cure. At least TB has that!
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2 ReactionsI can add that we alI know that this is an opportunistic disease. It will strike when one is weakened. Maybe you had a cold that lasted longer than normal. It could have gained a foothold then. These bacterial are everywhere, in every environment. It does seem like more nurses get it, but they are always around diseases and can be overworked, stressed. The only environment where it seems to be more pervasive is someplace with steam, open baths, steam rooms, showers, etc.
Hospitals are notorious for having MAC in their water systems. I worked at several hospitals for a number of years as a an aide and then as a nursing student before becoming a teacher.
@cmcclure , Hello. I have been keeping track of infected members occupations. It is roughly 85% were nurses or in the healthcare field. Second to that are teachers. I see two elemenys those two have in common. They are: both get exposed to many people with illness and germs, the other is that commercial cleaners are used creating stronger bugs. In some cases, super bugs. But, mainly, I think repeated exposure and immune systems put into overload. These are ONLY my thoughts, not fact.
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3 Reactions@cmcclure I take it I can add you to my list of healthcare workers who has MAC? I am collecting data. Thank you.
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1 Reaction@irene5 I am pretty certain that I got mine from our outside hot tub.
@jkiemen I agree, Jo Ann. The majority of our members on the site worked in healthcare.