Thank you, yes! that was my gut reaction to my pulmonologist’s recoil at me having an infectious disease dr. followup. I’d like to change my pulmonary but I am going to a large state university hospital group of doctors/specialists so I’m not sure how I can switch out. I think
once i have the
pulmonologist’s treatment and then have the appt. with the ID doctor, I will know if i should switch over to them for the supervision of treatment. I was initially diagnosed with lymphoma, then suspected bone marrow cancer, and then suspected lung cancer. I have had 1 major neck lymph node removed which came back “reactive”, 2 broncoscopies with lung samples taken, 4 CT and 1 PET scans, I now have granulomas and lesions in my lungs and liver and spleen, every blood test know to mankind has been taken and finally 6 sputum cultures. Only 1 culture came back as positive and it was for “chimaera” strain of mycobacteria. This has been going on well over 2 years. I have always been healthy, had yearly checkups, chest x-rays, and am very active, thin, and eat healthy. I had to be exposed via soil or water as I retired and moved rurally and garden, take care of farm
animals…..etc. I’ve read the horror stories of side effects as well as the prediction of only a 30% cure rate. Even scarier is you can get MAC again after being cleared of it.
I didn’t have any known
immunity issues.
The fatigue and cough and widely fluctuating body temperature have been the worst of it for me, although my blood work has been questionable at times-iron level crashed, etc.
I don’t think I’ve fit the typical MAC profile of symptoms or an immunocompromised body condition when I was infected. I guess it just goes to show how important it is to have the right doctors do the right testing to find it because the diagnosis should not take over 2 years. Did the diagnosis of MAC lung disease come as a shock to everyone else? Was it even something you had heard of before??
I appreciate being part of this discussion and group and know I will learn so much from everyone else on the unexpected journey. Thank you all for being here and sharing.