Terri thanks for your interest. My various organisms were susceptibility tested at NJH and Mayo last year. Azithromycin and ethambutol were effective against my MAC and my sputum samples have been negative since last summer. Arikayce was effective against both pseudomonas and klebsiella.

The testing for NTM requires that the sample be "washed" of all other bacteria prior to culturing. So, it is too late to test for these other bacteria with this specimen. I am waiting to hear what Dr Mcshane wants to do about future testing, i.e. will my samples be tested at U of Chicago or will I send them to Texas.

I first saw my new doctor at the University of Chicago in 2010 for a second opinion with respect to my shocking diagnosis of copd and bronchiectasis. Her opinion was that I was receiving optimal treatment from my Northwestern pulmonologist. Because all of my other doctors were, and are, at the more convenient Northwestern campus, I stayed there until the radiologists who interpreted my many ct scans reported that my nodules were indicative of mycobacteria. My Northwestern pulmonologist disagreed with the radiologists and said it was the bronchiectasis spreading. When she refused to test my sputum, I made an appointment for treatment with my second opinion doctor at the U of Chicago. At my first appointment with her, she gave me a specimen cup. When the test came back 7 weeks later positive for MAC in November 2018, she immediately referred me to an ntm expert, Dr Mcshane, who recently left Chicago for Tyler.

My pulmonologist is not an ntm expert and has no interest in becoming one. She is, however, a copd and bronchiectasis expert and, as a full Professor, teaches those diseases and mentors students in the U of Chicago Medical school. She told me that she will treat my underlying diseases but, if it doesn't work out with Mcshane in Texas she can refer me to an infectious disease doctor at the U of Chicago. She said that was her usual practice with patients who test positive for an ntm and that is what she did in referring me to Mcshane.

I'm sorry this is so long but I believe you have the wrong impression of me. The bottom line is that due to Dr Mcshane's treatment, I have been negative for all the crud that has shown up in my specimens since last summer. It is really bad luck for me that she left before my year of negatives was up. Rita

Thanks again, Terri, and Sue as well, for your interest and support. You're the BEST!

I talked to Dr. McShane in Texas yesterday and she reassured me that she will treat my bacteria from there. The concierge at Tyler has contacted U of Chicago and Dr McShane's records with respect to me are being sent. I hope she will have all the test results, including ct scans and the bronchoscopy as well as her notes. Everything from the year I saw her here. I am so very glad to be her patient because she is such a great doctor and we have a wonderful rapport. We are in agreement with respect to everything, including my water aerobics in an indoor pool, my use of tap water and that my U of Chicago pulmonologist has no interest in treating lung bacteria.

I was anxious to hear what Dr. McShane would say with respect to my stopping Arikayce at Christmas. She said that I was right to stop and she does not want me to take it again. However, she wants me to continue the oral antibiotics until June, one year after the first negative. She had said that I might be able to stop earlier but has decided that she wants me to have the full treatment so long as I am tolerating the drugs.

I will be sending my sputum samples to her in Texas and will send one for that second test that wasn't ordered in Chicago. She said that, after two weeks at Tyler, she knows that the lab receives samples from all over but she doesn't know the procedure. She will find out and let me know.

As for going to Texas, I told her that, if she believes it is necessary, I will come. But I don't want to!

It was wonderful to talk to her again. Rita