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jammer (@jammer)

Just found out I have mycobacterium abscessus!

MAC & Bronchiectasis | Last Active: Apr 12 6:29pm | Replies (118)

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@flamelilly7

I have just recently been diagnosed with MAC. I have a lovely Infectious Diseases doctor but when he told me I think my mind was trying so hard to grasp what he'd said that I didn't really hear anything else he said and I couldn't think of any questions to ask him. Of course I have so many questions now. I'm hoping someone will be kind enough and honest enough to answer my questions, especially the first one.
(1) What does end stage MAC/NTM look like. Do we suffocate to death?
(2) I haven't started my treatment yet because I'm terrified of the side effects. The anti-biotics I have are Azithromycin, Ethambutol and Rifampin. Could anyone please tell me if they have been on these and what being on the treatment is really like.
(3) Does anyone really get completely healed from this disease?
If anyone would answer with anything I would so appreciate it.
Flamelilly7

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Replies to "I have just recently been diagnosed with MAC. I have a lovely Infectious Diseases doctor but..."

It’s scarey when u first get diagnosed..knowledge is power..the more you get the less anxious you will feel..I was on the big 3 two years ago, and tolerated it well…MAC is not a death sentence..we can still live productive lives, implementing airway clearance, nebulizing 7 percent saline, Aerobika etc..we grieve the loss of our health initially, but in time you will feel better💕

Good Afternoon, Flamelilly,
Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your question.

Whenever I get bad news in the doctor's office, especially if it about something I never heard of before, my first reaction is often to panic, and get what my daughter calls "brain freeze" no idea what to ask, what to do… that happened to me 3 years ago, now I try to help others travel this road.

First – DEEP Breath! – Literally and figuratively – for the most part MAC and the Bronchiectasis that usually goes with it – is by and large a condition we LIVE with – not something we die from. There are NUMEROUS treatments used, individually and in combination.

Here in the discussions of MAC/NTM and Bronchiectasis, nearly all of us started just like you. In addition, many of us were quite ill for months or years before the right diagnosis, because so many care providers are not well-versed in it as a fairly rare condition. On Connect you will find dozens of people happy you help you with information and encouragement, many who have done a lot of research and study.

From your questions, I am guessing you are suffering from extreme shortness of breath and coughing – these are treatable, sometimes with airway clearance and inhaled meds, sometimes with antibiotics, sometimes both. The question about a cure – that irritating term "it depends!" If you have Bronchiectasis, COPD or another lung disease, it won't be cured – just managed. MAC is hard to "cure" because it is everywhere, and tends to sneak back in, but treatment can knock out a majority of the infection, and with other strategies it can be managed without antibiotics, sometimes for long periods.

You can read more about my journey here, and in some of my posts: https://connect.mayoclinic.org/member/00-b4b2c4df9c7bfa4e138993/. You can use the search box and type MAC and Big 3 to read about the antibiotics. They are not fun, but manageable for most people.

We can answer you better if you share a little about your health and your journey with us. I look forward to hearing from you as you travel this road.
Sue