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5 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@ginak I can't get the site to open for me. I am looking for study center near zip of 53121. Nothing opens

Thu, Mar 7 7:13pm · Extreme fatigue in MAC & Bronchiectasis

@mariierod123 I wasn't either, it just came on suddenly and thought I had pneumonia and then was diagnosed with this darn thing.

Thu, Mar 7 7:10pm · The big 3 antibiotics for MAC in MAC & Bronchiectasis

@megan123 I had that happen after I completed by first year. I had some sudden pain that then turned to an ache for a few days. I am now on month 16 and have now started getting nausea for the last month after all this time.

Thu, Jan 31 8:13pm · Nitric Oxide study in MAC & Bronchiectasis

I wanted to tell you all that I got a call on Monday from the company that is pursuing the Nitric Oxide study. They are currently working with the FDA but hope to have their Pilot Study ready for enrollment of subjects in the 4th quarter of this year. They plan to call me when they are ready to enroll subjects. I will keep you all posted.

Wed, Jan 16 5:23pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@ann0616 Kind of sounds like what I had happen. Generally healthy until a sudden case of pneumonia. Just completely out of the blue. It scars the heck out of you. I am the same age and also live in Wisconsin about 20 miles from Lake Geneva. I am seeing Pulmonary in Milwaukee at St Luke's and had another opinion at Froedert. I was diagnosed in 2015 and started treatment in 2017. My first dose was Nov 30, 2017. I have had several CT's along the way. Each time I have one I go into panic mode because I am scared. I have a CT scheduled for March to see if I can stop the meds. Now I developed a UTI so dealing with that. Nothing like being on and additional antibiotic and trying to find one that is not contraindicated with the BIG 3. (Azitromycin, Ethambutol and Rifampin) By the way I was thinking I may have been exposed when I went to a conference at the Monona Terrace as I was in the small closed room where they had the hot tub for a while.

Wed, Jan 16 5:15pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@macjane I have not taken it. Can they change you to something else? Why do you take it?

Thu, Jan 10 8:48pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@1065408 I believe both Clarithromycin and Azithromycin would interact with most Antiarrhythmic medications because of the QT interval prolongation effect. Is it constant or intermittent? I think the only way they would be able to use something else would be to have you start one like that in the hospital while they can monitor you and determine if the interval stays in a reasonable range. Maybe Azithromycin would be preferred over Clarithromycin but still would need to be monitored closely. There are other similar medications like Propafenone and Sotalol, Tikosyn but they have the same risk. But you would have to see a Heart Rhythm MD called an Electrophysiologist to help out with this.