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Thank you for sharing your experience. Traction BE was the initial read but the second more specific read was diffuse cylindrical BE. I am in the DC area. There is a clinic at UVA for BE and also PCD. I did read a study that was done with NJH that showed some of their patients with BE were heterozygous for PCD or alpha 1 anti trypsin. I am heterozygous for both. I definitely think I have some risk factors at the very least. So I think I am off to UVA. Thanks again.
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@annalaine interesting re study of BE patients heterozygous for PCD. Can you provide a link or citation for that study? I also had a couple single gene hits for PCD, but like you was told there needed to two copies to be diagnostic. I also have no history of lung infections. None of my doctors have shown any interest in looking further at PCD.
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Thank all of you for the most informative discussion here.
I am currently seeing a pulmonologist at Mayo Clinic, Rochester, MN
who finally gave me very specific details on Airway clearance with nebulizing 7% saline while using a an Aerobika device. I also begin the nebulizing with Albuterolto open the bronchial tubes.
I was diagnosed over a year ago with BE and MAC from docs in Duluth , MN, Essential Health and after coughing up some blood a couple of times started the Big 3 antibiotics 6 months ago which I would like to get off of now that my sputum is showing negative for MAC.
Has anyone been able to get off of the antibiotics if you are doing saline airway clearance regularly or do I strictly have to take them for a year after a negative result?
Thank you all for your very helpful experiences!
Has anyone stopped