Hello Terri and others – this is Pam in Sudbury, MA I have just met someone who has recently moved to the Boston area and she is dealing with some serious issues with her MAC. I told her I would reach out to my group at Mayo to see if any of you have any experience with the following:
She was diagnosed with MAC last year and began the 18 month treatment. But as of a few days ago, her doctor called to say that the MAC is still there (she has been on the meds for 12 months now). She knew something was not right as her lungs were really hurting, especially at night. She has never coughed with her MAC; she just has searing pain that moves around in her lung area. She thinks it is Intercellulari, but she is not 100% about that. The last test was sent to NJH. She says that nothing will make her cough ( she has tried saline, etc.) so she feels the infection is very deep. She is going to try the vest soon. While I help her find a new doctor here, she has no idea what she is supposed to do at this point. Here are my questions:
Has anyone had the MAC come back while taking the 18 month regimen of meds?
Has anyone had the symptoms she has with no cough but serious lung pain?
Can anyone suggest a new “route” to take? She is very scared. She has already signed up for a phone consult with Jewish. I would be most grateful if any of you can address my questions so that I can pass on something to give her hope. Thanks so much, Pam