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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
p.s. For those on this Forum who have known me for a while .. just saw Dr. Aksamit last week .. AND I am STILL in remission .. AND instead of quarterly or bi annual visits .. I can NOW go to one a year!! YEAH!!!!
Of course with the admonishment that if I have increased symptoms etc I am to contact him .. BUT I intend to continue my NordicTrack and yoga .. be happy and live my life!! Again .. YEAH!!!
Replies to "p.s. For those on this Forum who have known me for a while .. just saw..."
Hello there! Glad you found this Forum .. it is a great source of<br />
information and support!<br />
<br />
Personally if I was sitting in your shoes .. I would go back to the same<br />
Doctor who diagnosed you with MIA/MAC in 2012 .. discuss your symptoms .<br />
and request a "SPUTUM CULTURE". With a sputum culture which takes about<br />
two months .. they will be able to tell if any MAI/MAC cultures grow from<br />
the sputum .. the number of colonies .. the type of colonies .. and then<br />
based on your symptoms plus probably an Xray and/or an MRI your Doctor will<br />
decide a course of action. In my opinion it is like a puzzle a well<br />
qualified MAI/MAC Pulmonologist puts together with all those factors .. to<br />
decide on just what course of action to take. It is complicated and I have<br />
been blessed with an outstanding Pulmonologist at Mayo Clinic who has<br />
walked me though this journey since 2007 .. bless him!<br />
<br />
Good luck on YOUR journey. Keep us posted on how things go .. we will be<br />
keeping you in our thoughts!--<br />
*Hugs!*<br />
* Katherine*<br />
There is a site called Inspire it is thru . They have many topics but many<br />
Mycobacterium topics and followers<br />
[image: American Lung Association] <br />
Living with Lung Disease<br />
Lung<br />
infections and diseases support group and discussion community<br />
<br />
- AMERICAN LUNG ASSOCIATION <br />
- HELPLIN <br />
Hello Dixer, you are SO right! It is helpful to explore any/all credible<br />
resources to help us understand our disease .. and find support on our<br />
journey. I also follow the American Lung Forum. Below is the link in case<br />
you might find it helpful. It is important to only seek out credible<br />
resources .. too much misinformation or outdated information out there ..<br />
be careful what you read!<br />
<br />
Take care on this journey .. but know we are all on it together!<br />
<br />
<br />
https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/alternate-therapies-for-mycobacterium-avium/?page=last#replies<br />
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I was diagnosed with MAI/MAC in 2012 and have never received treatment, since I had no symptoms. I recently had pneumonia and since then have a relentless highly "productive" cough. What symptoms signal active MAI? I'm wondering if this is it?<br />