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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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Thanks I going to the doctor today. I hope he can figure what’s going on. Thanks Rita
@anniepie @heathert in my case doc decided against medication based on symptomology...I'm asymptomatic so no meds needed
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1 Reaction@boomerexpert @heathert , Hi there, I am curious when you say “asymptomatic”. My dr and I will need to decide soon whether to start Big 3 or not. I’ve had MAC avium in lungs diagnosed in 2016, and now m. Abscessus has moved into my lungs (already in sinuses.) currently I’m asymptomatic, except for flu-like body aches and fatigue. Historically, I’ll have aches, quickly followed by fever, exacerbation. But I’m “stalled” at extreme aches for the past 7 days! Keep wondering if abscessus has disseminated to my blood or digestive system, or what in the world this could be? Taking Tylenol and trying to fit through it and not miss work, but it’s tough. I have GERD and DDD, but no other co-morbidities. I’m in touch with my dr. at Stanford and will see ID doctor in January, but just wondering are these tremendous aches part of the m. Abscessus? Thanks for any thoughts
@brigby I don't as yet have abscessus so can't provide info on that, but sounds like you are symptomatic...I have none...no cough...no flu-like body aches...etc. so truly asymptomatic thus not in need of treatment at this time...
@brigby sorry I am unable to help as I have not has absessus. I have been achy on and off but thought it was my medication or anxiety doing it. I hope you can get this sorted soon.
@boomerexpert Well then that’s great, you go, girl!!
@heathert thanks to you both for your responses. God Bless and keep you!
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1 Reaction@pkayh, Pat, everything you wrote here sounds just like me; right down to the painting and cooking. And, gratefully, my husband loves to cook also.
@xfirerose @america @boomerexpert @jkiemen I hope Rita and others you have found a way to treat the oral thrush in the mouth an throat. Yes it seems we really have to stay away from the drugs that interact with our MAC meds. Please let us know how you are going now.
I looked up some natural alternatives that might help, and checked them against the Big 3 to make sure they are okay:
1. swabbing inside the mouth with pure, virgin coconut oil (caprylic acid is the active ingredient)
2. yogurt swabs of the oral area/ (needs to be plain yoghurt)
3. use vinegar diluted in water (start with very dilute, using a lot more water) -- sip this from a cup and gargle or swish around in your mouth for a while, then spit out.
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1 ReactionI was diagnosed with MAC last month. I am on meds 3 times a week. Sometimes I feel terrible. So tired and sleepy. I don't know how I'm going to do this for a year.