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Jun 15, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Jen, I was seen at Mayo with good insurance.  They kept sending me a statement that my insurance still owed $2,000.00 for my care (this was after I paid my portion).  I called insurance company and they said they always had problems with Mayo billing.  After two years Mayo sent me a check for I believe at least $1500.00 they said I had overpaid.  Go figure.  Good luck.Linda
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Jun 7, 2017 · 2017 NTM & Bronchiectasis Physician/Patient Conference in MAC & Bronchiectasis

PS:. The point of this”diatribe” is agreeing that this should be a reportable disease as you said. I write to the CDC but doubt anyone reads my messages.
Hugs

Jun 7, 2017 · 2017 NTM & Bronchiectasis Physician/Patient Conference in MAC & Bronchiectasis

I’m jumping in here, have not rsvp’d here, mostly with Katemn on another site. I had symptoms of MAC since think 2009, but wasn’t diagnosed until 2011, got the old asthma diagnosis. Was treated with the big three for 5 years and have been culture free for 2 years, off meds one year.
The reason for this diatribe is your mention of a registry. In my vast reading I read about the COPD Registry it has included
MAC/?NTM patients. While in Midwest was SOO fortunate to get an appointment to with Dr. Aksamit and they enrolled me in their data base. I have another rare disorder, and they have formed a strong registry. The disorder is fibromuscular dysplasia, quite interesting (fmdsa.org). A patient, Pam Mace, is the executive director, and it has become an international organization. Have other cardiac issue so don’t have the energy to pursue further information re starting a registry, but the executive director can be reached at the site if anyone has the energy.
Love to all, Linda

Jun 6, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

There are too many posts with this system you've changed to.  The previous way was so much better!! I love this website,  but it's taken over the net .  Thanks so much for all your work, commadere, and Information and I look forward to changes…
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Jun 1, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I may ask about the alternating meds in the future.

May 26, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I take another med that had to be incerased while on the antibiotics.