← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Replies to "I would love to add to this discussion or chat with either of you. I was..."

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

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

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.
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.

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

Also want to add that I have been living with MAC for 11 yrs. I feel the
best I have in all of these yrs thanks to treatment from the Mayo Clinic.