(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.

@xfirerose

@america, I have had a battle with thrush in my mouth and throat. It finally took a round of two antifungal drugs to finally get rid of it. I also have CVID and I am on antibiotics frequently. These and steroids start my thrush infections. When it is in my throat I gag and have a hard time swallowing.

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Thanks I going to the doctor today. I hope he can figure what’s going on. Thanks Rita

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@heathert

hi @anniepie It is difficult getting a dr who knows lots about this. I think if your scan shows alot of MAI then they will want to treat with the big 3, however if your MAI is minimal they will look at other methods or a wait and see approach. I hope you can get this sorted. This is a great forum, we are very lucky. Hugs Heather

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@anniepie @heathert in my case doc decided against medication based on symptomology...I'm asymptomatic so no meds needed

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@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

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@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...

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@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.

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@boomerexpert

@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...

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@boomerexpert Well then that’s great, you go, girl!!

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@heathert

@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.

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@heathert thanks to you both for your responses. God Bless and keep you!

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@pkayh

Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc. I am in a stock club, too. I do go once a week to a painting group, but I don't seem to paint at home. The trouble is, even though these activities involve sitting, you always have to get up and get something. It's the same with cooking. Fortunately, my husband does most of the cooking. I have to spend a lot of time with my breathing activities - Vest machine, nebulizer, Acapella, cleaning equipment, exercise (I force myself to go to the Fittness Center, but it exhausts me). But I fear if I don't I will be able to do less and less.

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@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.

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@america

Thanks I going to the doctor today. I hope he can figure what’s going on. Thanks Rita

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@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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I 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.

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