(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.