@tdrell Yes, Terri, you are right about that. I wrote it that way because some newly diagnosed may not know what NTM is.; all they have been told is they have MAC. I wanted Elisse to know that the NTM foundation is for MAC so that she can get some resources.

Theresa, (@windwalker), A question:
Why is it important to see both a pulmonologist and an Infectious Disease doc?
I am a bit confused as to who will help coordinate my care. (My primary care Dr? Pulmonologist? ID Dr?)

I am in Lexington, KY. The University of Kentucky Medical Center does a lot of research and is considered to be a great place for rare or unusual diseases. I called last week to see if they had an I.D. Dr. I could work with and unfortunately they are booking pretty far out because of a shortage if ID docs right now. May end up having to go to Louisville. Dr. Escalante at Rochester Mayo recommends starting Big Three in the next 2-3 weeks. Best, Carolyn

Good morning Carolyn! It is recommended to see an infectious disease doctor because they are generally more knowledgeable about mycobacterial infections than some pulmonologists and GPs. Think about it, they specialize in in little bitty germs that make us sick. I wish I had seen an I.D. doctor back in 2001. ALL of the pulmonologists I had seen over the years; not a one did a sputem test to see what I had! I went to the 'best' doctors in two major cities. They told me I had asthma (which I didn't) and bronchitis, so only had a week's worth of antibiotics. This cost me precious lung tissue. Going years with infection left me with only 44% lung function. I am dangerously close to needing a lung transplant. I did not get treatment for MAC until 2013! That is why it is so important to see an I.D. doctor. It really makes me angry about all of the years I mis-spent hacking non-stop and unable to do much because of being so short of breath.

Hi Bonnie! I think you will like your experience at the Mayo Clinic. It is a well run institution. They will test you all day long, (sometimes over several days) and at the end, all test results are read, you will meet with the doctor, you get a diagnosis and treatment plan all in the same day.

Your lips to Gods ear! I hope there is a plan of action. And I am so looking forward to this. Thank you so much.

Terri, I am so sorry you had to pay such a heavy price for ignorance about MAC!! I am scheduled to see a local I.D. doctor a month from today. I am in regular communication with my primary care doc & pulmonology nurse.

@cld120 Carolyn, I am glad to hear that you have an appt with an I.D. dr. Please keep us posted.

@bonniewhite56 Hi Bonnie! I hope you had a good visit with Dr. Leventhal today. What did you think of him?