It has been a terrible situation. Very long story. However, after my U of L doctor didn't know what to do he was sending me to a ID doctor that never called back to set me up an appointment. After several phone calls and my trying to continuing running our businesses I went to my local family doctor and said could you help me if I gave to you information of dr. and then I could be tested her with you and you could be advised as to what to do next. She said yes to help me I traveled to a conference in Maryland and gave her all the information. She treated me with the same med big 3 for the remainder of 18 months then when it looked like I was all better she took me off. We didn't really know what to do. I thought maybe I should have been tested before I stopped but she said if you don't feel sick just stop so I did and Last November it came back. I have taken advise from this forum and have made appt with Mayo Clinic and have consulted with my local clinic and they said they will support me. However, if I have to go back to Mayo Clinic several times to get better I will. Dr Timothy Aksamit, Md is who I have the appointment with on March 1, 2017. I live in Indiana he is in Minn. but I want to live!! Amen!I so appreciate this group! God Bless everyone. Donna 

@donut, Oh Donna, THANK HEAVEN you are FINALLY getting to Dr. Aksamit. TRUST that you are getting to "mecca" ... AND to one of the kindest .. loveliest men I have ever encountered .. frankly I just love him .. SO grateful I found him after I was diagnosed with MAC in 2007. You ARE going to LIVE .. KNOW that .. TRUST that .. KNOW that everyone on this Forum will be here for you every step of the way .. you found us .. we will not leave you.

I just CANNOT read "then when it looked like I was all better she took me off" without getting SO angry! Doctors take an oath "DO NO HARM .. that ALSO MEANS .. if you are NOT qualified with ENOUGH knowledge to TREAT A DISEASE .. REFER IT OUT TO SOMEONE WHO IS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is just unconscionable that she took you off the antibiotics WITHOUT twelve months of negative sputum samples. Sorry but it makes me SOOOO mad! Well off my high horse! Just glad you have an appointment .. you WILL live! Hugs! Katherine

Thank you again for your kind support. May God Bless, Donna

<br><br><br><br><br>Hello! I am SOOOO glad you chose to go to the Mayo. You will definitely get <br>proper care there! Let us know how it went for you. Hugs, Terri M.<br> <br><br>

MAC no cough. I am also at Mayo with Dr Aksamit, after being at NJ Denver. He is very kind and understanding. No frightning prognosis.

Fflowhplar...am curious what made you switch from NJH to Mayo? Terrid

NJH did not give a feeling of self confidence.<br>I had a episode whilst blood drawing and they had no emrgency room facility.

Hello @fflowhplar, Welcome! What is your first name .. more personal. What is your diagnosis? You are SO lucky to get into Dr. Aksamit .. he is so darn busy and popular! You are so right .. he is the kindest .. nicest man .. I have been going to him since 2007 and have found him to be so compassionate. Are you starting on the antibiotics yet? Keep us posted .. we have all walked this walk! Hugs to you! Katherine

How is treatment different at NJ compared to Mayo Clinic? Waiting for sputum results, haven't been diagnosed with MAC yet but my Cat Scan wasn't good. No cough just so tired and terrified. Told at NJ that they wouldn't give me the drugs.

<br><br><br><br><br>They cannot give you the drugs until you get test results back. Those <br>cultures need several weeks to grow, and then they need to do a culture study to <br>determine which drugs will work. Please keep us posted on your test results. We <br>have all been in your shoes of feeling terrified. You will be ok. Jump each <br>hurdle as it comes. We are here for you. - Terri M.<br> <br><br>