When I responded to you Terri, I neglected to mention that my husband has been on Prednosone pack 10MG and also Cefuroime Axetil 500 MG ever since his Bronchoscopy on 5/15/18.

@joan912 Hello Joan. Do you mind if I ask how your husband's appt with Dr. Aksamit went at the Mayo?

@suzie2017 Suzie, I looked up the med your hubby is taking 'cefuroime axetil'. It is a broad spectrum antibiotic to kill bacterial infections. If you find that your husband is not improving on it, you can ask his dr to possibly switch him to moxyfloxcin. It is substantially stronger and it is one they use to treat mac. I had read that it is a good one to substitute the cefuriome with. I am glad he is on prednisone, that should help with the inflamation he probably has going on in his lungs. Oi hope that he gets to feeling better soon.

Unfortunately Dr. Aksamit was sick that day so we didn't get to see him. We saw another physician who prescribed many tests, but since we were paying out-of-pocket, it was going to cost too much. We ended up just returning home.

@joan912 Oh no! That sounds disappointing. Does your husband have Medicare? I wish he could have gotten a consult at least by another physician. Had you taken his recent records with you?

@joan912 I am so sorry that it played out that way. Something doesn't sound right.

No, neither of us is eligible for Medicare. Kaiser wouldn't approve the referral. We took all the records and CT Scans. The physician we saw did do an initial consultation and evaluation. She wasn't sure that the MAC was still active but wanted to do another CT Scan, which made sense. She thought some of my husband's symptoms might be caused by something unrelated to MAC, therefore the extensive tests, which would have cost a lot more than our initial payment.

Thank you Terri. My husband does seem to be getting better as far as the amount of blood he is spitting up in his phlem. Last evening there wasn’t any blood showing. I am amazed that he feels as good as he does. Yes, we have an oximeter to keep tabs on his oxygen level. He is normally around 93 when he is on oxygen and then he goes in to the mid 80’s when he is off. I take his temp AM and PM for the ID Doctor and it has really been running low. Off and on around 95.8 - 97.8. He continues to eat well. I am glad to hear that you have gained some of your weight back. Do you also feel better? Are you continuing on antibiotics or do you have your Mac under control. You are great to respond to everyone.

@suzie2017 Thank you. I am glad to hear that he is perking up.Aside from the pinched nerve in my back; I feel great. My energy level comes and goes. I haven't coughed in two years. (I used to cough non-stop for years) I decided to take a break from all meds because I feel so good. I stopped taking my antibiotics in February. My doctor does not know this yet. I go for a sputum test in a few weeks. I just want to get an idea if the infection is really gone at this point. After my tests, I plan to go back on my antibiotics as a preventative measure. My doses are small and no side effects. I felt like my body was asking for a break.i even stopped my heart meds. I have found that now that my lungs are clear, my heart isn't being taxed and I no longsr have the arrhythmias. I will start back on my nebulized saline tonight. That is one thing each and every one of us should be doing daily. I just got tired of the daily grind of scheduled meds and 4 hrs of inhaled treatments. I must be doing pretty good. My oxygen level is now 97. It had been 90 for 10 yrs. It will drop to 86 and lower when I climb stairs or exercise.

It is absolutely wonderful that you are feeling as good as you are. If you feel real good, you don’t cough and your oxygen level is better, why would you choose to go back on your antibiotics? My husband takes about 16 prescription drugs plus his antibiotics that will run out in a few days. I often have wondered what would happen if he stopped taking them. However, we are not going to try to find out. Due to him spitting up bloody phlem, his heart doctor took him off plavix. I was surprised. Today his phlem has less blood in it. He told me today that he might look good and seem good but he does not feel good. He said his mind is all mush. I think that is the alzheimers. He does not express himself well so it is hard to find out what is causing him pain.