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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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Yes - nectar thickness
I’ve tried a gel called simply thick and a powder mix ( can’t remember brand name)
@lainey. What about if you leave it a little more liquids to get use to it. I use the same and I like the gel. It is not like drinking clear water and it feels like you can’t satisfy your thirst but you kind of get use to it. The powder is thicken use the
CLEAR but I prefer the gel. Have you had the xray video deglutition Lainey?
@lainey. What about if you leave it a little more liquids to get use to it. I use the same and I like the gel. It is not like drinking clear water and it feels like you can’t satisfy your thirst but you kind of get use to it. The powder is thicken use
the CLEAR but I prefer the gel. Have you had the xray video deglutition Lainey? Nic
hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself... It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.
MAC is not transmitted person to person...we get it from the water and soil...spending time in a hot tub would do it...
@ cmcclure i will tell you what my infectiologist told me. A lot of people do have a MAC but they don’t know before it start to bother them. The MAC is inactive until something triggers it to be active. There is many more people who has it than known but
has never been diagnose. My doctor says it is not contagious and can not be transmitted to another person. Maybe the stress you live at work has a lot to do with it but how can you prove that? That is a good question? Since Dr doesn’t know the reason it
is based on a MAYBE we contracted a MAC working in a garden or did you contracted the tuberculosis when you were young or....or.... Drs don’t know! Do you have bronchiectasis? Do not stress yourself it will be worst! Our prayers will be with you to guide
you toward health!
Nic good luck! Do not hesitated to ask your questions! All questions are good because we all have our own experience!
Maybe from the water. But I believe there are allot of us in health care that have it.
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1 ReactionYou are absolutely right. But you know what I recently discovered? There has not been one incidence of MAC from an “outside” hot tub. I will try to remember where I read that. Every incidence of MAC has been from “inside” hot tubs. I am guessing it is because of the aerolized water in a closed space. Anyway I thought that was interesting.
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1 ReactionOkay here i undertsand it is not person to person.... At these hospice patients would spit, throw feces pull there traches out and spit across my bow. I bathed these pateints in showers .My point isnt to address person to person contact only to stop abdication of responsibility.. So they (powers that be) either need to say there is a very low probability OR sign the sheet that says I can continue to work with any and all pateints this includes maternity ward, burnward, transpant, and chemo pateint... something has to give. Thank you all I need ..something has to give.