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Fri, Apr 26 9:24am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@tdrell Keep me posted on what you find out. Would it help if more of us also contact the company?

Thu, Apr 25 11:03am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@spencersok @pfists @mariierod123 @angiejohnson I had my follow-up after the Lung Biopsy. Said it was a Granuloma. Now I have to wait for the Cultures, try a video swallow study and visit to ID. I am going to start making arrangements to see if I can get any improved coverage for National Jewish or for Mayo in Rochester.

Thu, Apr 25 10:43am · Nitrous Oxcide? in MAC & Bronchiectasis

@jammer Nitric Oxide is in clinical trials for use in MAC Lung infections and some studies have been done in Cystic Fibrosis. One company is studying inhaled Nitric Oxide Gas, the other an inhaled powder form.

Wed, Apr 24 8:49am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@tdrell For the Lung Biopsy, I had IV sedation through the chest. I had to lay on my abdomen and they went through my back. I went to work the next day. The Nitric Oxide study in Canada was a 10 pt study. I don't know the result of it. I keep checking the web site and sending them emails for updates on the progress. The company is Ait-Pharm check https://www.centerwatch.com/clinical-trials/listings/159841/non-tuberculous-mycobacterial-pneumonia-inhaled-gaseous-nitric-oxide/

Tue, Apr 23 9:53am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@mariierod123 It is a little sore. Coughed up a little blood which they told me was to be expected. I am at work today. Nitric Oxide is also used for Pulmonary Hypertension. If we get to try it some time, we should all have good Pulmonary Artery Pressures too.

Tue, Apr 23 7:12am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@angiejohnson Had my Lung Biopsy yesterday. Now more waiting for results.