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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with another more serious infection during a bronch.
I was on 3 to 6 antibiotics for 8 years. After 2 years I no longer tested positive (sputum) for the MAC.
After surgery to remove the lobe with the other, more serious infection, I have neither.
Good nutrition, daily EXCERCISE via workouts on my tread mill to keep lungs clear, have been key. Basically, I never let it interfere with my life. Yes, sometimes I was tired particularly after my morning 'cocktail' of meds, but my husband was good at gently coaxing me on, and I would eventually get over the 'hump' and enjoy an active day.
Also key, get an adjustable bed. They are expensive, but necessary so that you don't sleep flat, I waited years, and found I should have followed my Dr.s instructions immediately. Also, eat light at night.
but really, the huffing, puffing excersize 4 days a week, keeps the lungs clear and seems to have been (and still is) my biggest help other than the meds.
Replies to "I was dx'd with MAC in 1998. During the diagnosis process I was subsequently infected with..."
JS you are an inspiration. Who is your doctor and where do you live? I live in Indiana. I am looking for a knowledgeable doctor. Praise God!!!
@donut .. Donna did you ever get an answer on this question? Still interested? We started a new discussion .. why don't you repost it there?! Hugs! Katherine
https://connect.mayoclinic.org/discussion/good-mac-doctor/
@katemn, you ok haven't seen a post from you since April 13? I have been doing research and writing my appeal for my pain medicine so i havent had time to write any thing on mayo connect. You were takeing a sputum sample in for evaluation. I'm just glancing at names and dont see yours. I Hope you and you husband are alright. I'll keep checking back. You are missed!!!!!
Becky
Thanks for sharing. My wife has MAC and had been treated with 3 different times of antibiotics and was well. After 2 years we stopped and unfortunately the bronchocopy shows MAC after 4 months. Doctor put her again on the same 3 antibiotics with a possibility of surgery. Where we could such a surgery please . We are living in Dibai UAE. Thank you and god bless you
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you caught something during the bronch? I wonder if I got either the lung fungus or the nocardia from my bronch?