Hello Nelisabeth, Welcome! I am SO glad you have found our Forum. You are being tossed from pillar to post by the medical community .. you MUST take control of your life and your health! You can do this by educating yourself on your disease .. .. read past pages of this Forum .. you have already been told you have a form of Mycobacterium. You have been too many places/too many doctors/too many drugs. Remember "Too many cooks spoil the broth!" No MORE!

If I was sitting in your shoes here is what I would do:
1. CONTACT BOTH THESE DOCTORS YOU MENTIONED (see below) .. ASK FOR THE "RECORDS DEPARTMENT". TELL THEM YOU WANT A COPY OF "ANY/AND ALL MEDICAL RECORDS INCLUDING OFFICE NOTES". Ask them what you need to do to get these copies. TELL THEM "ANY/AND ALL MEDICAL RECORDS" .. YOU ARE SPECIFICALLY LOOKING FOR SPUTUM CULTURE RESULTS! Usually you have to sign a form. If they will email you that form and allow you to sign it/scan it/email it back .. that is the quickest way to go. If they cannot .. or you are unable to do it .. ask them to mail the form to you ASAP! Start keeping a notebook of EVERY medical contact you make: name of person you spoke to/employee or extension number/date/time/phone number. If you do not get this form in a reasonable period of time .. FOLLOW UP with another phone call!

HAVE THESE RECORDS MAILED directly to you! Tell them you are getting a second opinion BUT have found the medical records get lost at the medical facility and you want ALL the records in your OWN hands so you can hand them DIRECTLY to the doctor .. no chance of them getting to the wrong doctor/wrong department etc. Be ASSERTIVE! Tell them it is for ongoing care .. do NOT agree to pay for them .. speak to a Supervisor if necessary. If they insist you pay .. then have them mailed to a local doctor you trust .. call first and get permission .. then you can later pick them up yourself for getting that important second opinion. These records will show what strain of Mycobacterium you have plus details.

test. (they also did one in hospital but said nothing about it.) Six weeks later, Dr. Pulmonary called me to come in .... told me i had Macobacterium Nebraskan " (I wonder if this was: Mycobacterium nebraskense)
https://www.ncbi.nlm.nih.gov/pubmed/22308639
2. RESEARCH for an INFECTIOUS DISEASE DOCTOR. Call .. ask them "How many MAC patients have you treated in the past 12 months?" You want someone who KNOWS our disease! Tell them your history .. q quick recap of what you have told me. Develop a quick outline .. tell them it is URGENT to be seen ASAP .. GET THAT APPOINTMENT ASAP!
3. By this time you should have gotten your records in your hands .. go to that appointment. Request another sputum test REQUESTING a test to find out WHICH antibiotics will work against the particular stain of Mycobacterium you have. Request a Ct scan to show just where the mycobacterium is in your lungs .. PLUS to establish a baseline for the future.

YOU SAID: My N.P. said she did not think a CT/wcontrast would tell if pneumonia or MAC and my bloodwork did not call for CT. MAC IS DIAGNOSED EITHER FROM CONSECUTIVE SPUTUM TESTS OR A BRONCOSCOPY. The CT scan with contrast however WILL show what/where the lung damage is. Blood work will NOT diagnose MAC!

4. Do NOT even think about your surgery until you get this issue straightened out.

Nelisabeth, don't give another thought to where/how/when you got MAC .. it matters NOT! Right now" put your energy into what you can control and let go of what you can't control!" Right now get started on 1 through 4 items above .. AND do not see any more doctors pumping you with drugs without testing your sputum to see which ones will kill the bugs! I had this happen to me in 2003 with pneumonia .. before I knew better to REQUIRE they culture my sputum to see which antibiotics would work against WHICH bug! The doctor pumped me with 5 rounds of antibiotics and 3 rounds of steroids. I was SO sick! Unless you are urgently sick and need an Emergency Room .. do the above 1-4 .. and IF you get taken to the Emergency room .. have the above printed out .. and REQUIRE they follow the guidelines I've set above.

Good luck to you .. PLEASE keep us posted .. let us know how you are doing in this tough time. Sending you a Hug!
Katherine