My daughter is 20 years old with cystic fibrosis and mycobacterium abscessus. We have just completed our 2nd round of IV meds. Six months of Amikacin and Primaxin along with oral Zithromax. She started out on Amikacin and Tygacil but was unable to tolerate the Tygacil. Our first round of treatment was Amikacin, Cefoxitin, and Zithromax, but she had an allergic reaction to the Cefoxitin after being on it awhile and we had to stop. She was culture negative for a few months afterwards so we did not treat further until she started to be culture positive again this past spring. We see Dr. Wallace in Tyler, Texas. She has not had a positive culture now since May.
I don’t have any answers but just want you to know you are not alone in your frustration with this disease. I know exactly how you feel.