Cila, I'm so sorry you are so nervous. I know it is so overwhelming when you read everything on the internet. It really scared me at first. I know I'm one of the lucky ones since I don't need treatment. I really feel for you. I think this message board will be a godsend for you. Everyone sounds so helpful and supportive. You're not alone in this. Any one of them will answer questions you have about medicines or how to deal with side effects or which Drs. to see. Just reading some of the older posts can actually help. While some people struggle, many others do well or find ways to cope and they learn from each other. Ask questions. Someone is sure to have an answer or will point you in the direction so you can get the answer.
Hugs,
Janet

Hello.  I'm on a 3 antibotic treatment for MAC. One of the things I've learned from here is get a good probiotic.  I asked 2 different pharmacists and they both said florastor.  I have to take one in the morning and one at night so far.  I've also noticed when I eat greasy food I get more indigestion and looser stools...so trying to stay away but somedays it's hard.  I'm also trying to eat a container of yougert a day too.  I  also started 1 in the am and the other 2 in the evening but it made me feel nausea.  So now I take 1 and each meal and that has helped...as long as I eat enough food at that meal. Tomorrow will be 2 weeks that I've been taking them (along with a small medicine cabinet of other rx for other things - reflux, hashimotos, allergies, sjogren's,  joint pain).  I think so far I've done okay compared to others.  I'm just waiting for the day my fevers subside so can stop taking tylenol 🙂  good luck to you and you will make it through.  I tell myself 'everything is temporary'...it'll get worse or it'll get better (I always hope for better but life is a journey) and only one person (in my mind and heart) knows when the temporaryness (if that's a word) will end and a new one begins.<br>

Cila, I am SO sorry you are feeling this way. I know in the beginning I was really afraid also. But in the beginning I felt really alone because there was no Forum or support system like this Forum available at that time! Keep coming back here .. there are really good people here who are or who have been on this same shared journey.

Personally I took 4-5 antibiotics for thirty months for my MAI/MAC .. AND NOW I have been stable since May 2014!! I am happy .. healthy .. living a lovely live! Trust me .. there IS life after the antibiotics! It is REALLY important that you NOT fear this .. REMEMBER "Knowledge is POWER"! Take charge of this! When you can .. read over the other pages of posts here on this Forum .. there is a LOT of knowledge .. information .. AND support there. Remember .. we are here for you. Reach out .. we will be here!
Sending you a BIG hug! Katherine

I like your philosophical approach to this situation. And as a microbiologist who also suffers from MAC I must always remind myself about just how fortunate we are that there are antibiotics today to help us control this infection. Not long ago, folks were not so lucky.

Thank you Liliane, I really like to live by what I call my "gratitudes" .. reminding myself of all the things I have to be grateful for! Maybe it is just because someone smiled at me that day .. or because the sun shone today .. or just whatever! I absolutely believe in that old saying that "happiness is an inside job" .. and that each morning when we wake up we can make a new decision to be happy that day! It may sound hokey but I believe it.

You are so right .. we are SO blessed that there is a TREATMENT to stabilize our MAI/MAC .. we can get help!! Just today my husband saw his Cardiologist for his heart issue .. Afib. He is taking a newer medication called Eliquis which has almost zero side affect for him. Whereas his mother ended up in a nursing home for 17 years with a severe stroke. So sad .. had this or even an older medication been available back then so much sorrow would have averted for his family. Frankly, those of us with MAI/MAC would have SEVERE lung issues without the antibiotic treatment available to us today with the tools our doctors have now. Thank you Modern Medicine!

http://www.maclungdisease.org/frequently-asked-questions
I have found this University of Texas article very informative. Hope you all like it!

Liliane, this is just FANTASTIC! What a GREAT article! One area I am REALLY going to email Dr. Aksamit on is the one on MAI/MAC being curable. Hmmm .. did I misunderstand him or just what!! I thought I understood him to say you could "stabilize" it but not cure MAI/MAC. Because of the importance of accuracy on this Forum I am going to forward the article to him and clarify my understanding.

Thank you SO much for this article .. I think it would be just great for each new person to read it .. it answers so concisely SO many questions and concerns. Truthfully it might be overwhelming for some people in the beginning to read it .. but in time it would be invaluable .. again .. thank you so much for the information! Hugs to you! Katherine

It is a good website. The cure thing is confusing. If you look at the article - under the question "Is there a cure for MAC?" they say the cure rate is 90%. But, further down under the question "Will the disease cause an early death?" they say, and I write this verbatim "Although MAC may be "cured"..... Because they put the word cure in quotes that to me is saying it technically isn't cured, but is probably like you've said Kate, stable. But, it will be good to hear what Dr. Aksamit says. Janet

Thanks Catherine, I read the article and I have bronchiectasis from ace reflux I think. I started the med last week and I don't know what to do about sleeping. I only sleep about 3 hrs and most of the I'm awake. It seems like my body forgot how to sleep. I think that is another problem I'm dealing now. I use to take any kind of sleeping pills but now I'm on MAC med I'm afraid to take them. I'm just scared about this disease. Reading all your post help me calm myself down. Thank you so much for all you post.

Hi Janet, Dr. Aksamit replied .. but I am waiting for his authorization to quote him .. don't want to do it without his ok .. he is just a great guy! (Love your Photo! .. It is nice to place a face to our names!)