Going ON Holiday

-- that title is just an expression -- I am getting a Big Three holiday courtesy of my new ID doctor whom I saw on Tuesday, March 29th, 2011 -- this will be followed up on May 13th and I am, of course hoping the holiday can be permanent. The chances are that we will try some other pharmacological treatment to be selected after there is further analysis of my sputum specimens. He is sending them to National Jewish--the initial studies were done at Meridian and for some unknown reason they were unable to comply with the ID doc's wishes for additional testing.(The current ID specialist has privileges at Meridian and many other local hospitals but is on the staff at OHSU medical center in Portland and is involved in number of research studies on NTM and bronchiectasis.) I have been on the ethambutol/rifampin/clarithromycin thrice weekly routine treatment since 2005, if my memory is correct.The usual time of use is 18 to 24 months established jointly by the two main professional societies involved in respiratory/pulmonary diseases.Stopping the regimen is based on having negative sputum counts for a year otherwise one might continue the meds indefinitely but few do so and fewer though have hemoptysis issues. I have had consults in the past with other ID specialists about continued use and both were reluctant to have me stop the meds. At my request my Mayo pulmo agreed to an attempt to eliminate them in November of 2008, but progression was evident in lab workups so he recommended I resume the regimen which I did. The progression hasn't been halted as evidenced by CT and the sputum count raising up to 4.6 from 3. So it seems time to try something else, clofazamine is the only drug mentioned -- not sure how I feel about using this orphan drug which was pulled from the general market in the past and permission to use must be granted by FDA which requires the usual bureaucratic maze of red tape paper work. The scuttlebutt is that not many medical offices want to deal that. My main reason for the long use of the Big Three was the possibility that it reduced the number of hemoptysis episodes so I will be careful to track that- which is one reason I am using this blog to enter info, it will serve as a journal of sorts. As to my emancipation -- I feel unmanacled!