Thank you Katherine. I will get to work on this!
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Thank you Colleen. I contacted mayo clinic in Jacksonville but was told they are not taking any more Medicare patients for at least a year. I am so disappointed! I am so desperate to find a good doctor for my husband.
I am new to this forum, and I am researching treatments for my husband. He has severe COPD and was diagnosed in December 2015 with MAC. He was taking ethambutol, rifabutin and azithromycin from December until the end of June and was doing pretty well. We were in Florida at the time and drove to NJ at the end of June. Two weeks later his condition worsened and he was diagnosed with mycobacterium abcessus. He has been on IV amikacin 500 mg every 12 hours and imipenem/cilastatin 1000 mg every 6 hours, and azithromycin 500 mg daily for seven weeks, one more week of IV to go. The infectious disease Doctor said he will continue the azithromycin and will add Bactrim when the IV ends next week. We will be returning to Florida, hopefully in three weeks. We live about 30 miles north of Palm Beach. We like his pulmonary Doctor, but he doesn’t have a lot of experience with this type of infection. We are considering consulting with doctors at Mayo Clinic in Jacksonville, FL or at Cleveland Clinic in West Palm or in Westin, Fl. Can anyone recommend a doctor? It would be wonderful to have a doctor we feel confident in. We have yet to find someone. ( Prior to the MAC diagnosis, he had been seeing a pulmonologist at Univ. of Pennsylvania. CT scans showed some nodules that were increasing in size over time. He felt that bronchoscopy was too risky due to the condition of my husband’s lungs, but referred us to a radiation oncologist at Penn. My husband had radiation for “presumed malignant neoplasm” in his right lung in November 2014. We saw the pulmonologist and the oncologist again a year later and CT scans showed some new nodules. They said it was cancer, never suggested doing sputum cultures, even though we said my husband seemed to have an infection with increased mucus and cough. We went to Florida, and a few weeks later he was diagnosed with MAC! ). As you said, Kathryn , it’s important to do your homework. I wish we had gotten a second, or third opinion before my husband underwent radiation on his already damaged lungs.