@cathyt, Hello Cathy. I became the new mentor to this group recently; Katherine thought I'd be a good one. Will give it my best. I have been reading past older posts and noticed you have not posted in awhile and was wondering how you are doing? We care about our members; past and present. I look forward to hearing from you. - Terri

Hello @dixer - I've written before on here, and my husband would like a second opinion, preferably flying to the Mayo Clinic or to NJH. I've contacted both (though I contacted Mayo in Phoenix - it may make more sense to go to Rochester?). I'm waiting for NJH to call back to set up a conference with the nurse. Based on the result of the conference, they will decide if it makes sense to set up an actual appointment, which, I was told, will take 6 weeks. The benefit of NJH is that there is no up-front cost until after the conference. Mayo said it would cost $650 (non-refundable), plus extra costs for any other treatment. I do not know how long it will take to get an appointment with them. My guess is that the cost will be about the same for both places, but the important thing is that my husband can be seen by someone who has extensive history with NTM and bronchiectasis. I do not believe that the physicians at Kaiser do have this experience.
For NJH, who would you recommend? I see that there's a Dr. Dailey who appears to be the head of the dept. For Mayo Rochester or Arizona, who would members recommend? I saw a Dr. Akamit (sp) at Rochester seemed to be the expert there.

dixer I went to NJH....both Mayo's and NJH are specialists in NTM.....
I went to Mayo's in Rochester for other things over the years last going 14 years ago....
I was comfortable and asked for Dr Gwen Huitt at NJH...she like Dr Daley are infectious Disease specialists....they all work with a team of NTM specialists....who after nurse gets information from you...think of phone interview ,...takes over an hour...no cost...then send records when they tell you to...then those are reviewed...then they call to set up appt.....
Payment there seems secondary to getting clients care....all care was free from their beginning in 1899 to 1968.
I have traditional medicare and an excellent suipplement....and paid nothing for my care for 7 days of testing.and appts.
if you decide to go to NJH and want to choose a DR...watch the videos on Youtube from the NTM conferences in 2015 and 2016 from workshops for clients with NTM given at NJH....you will see the doctors present and see which ones seem to be your "type"
also...consider possibility of attending this years workshop all day Saturday October 21st.... although after a few months those programs will be posted no doubt.
one other advantage to NJH...there are alot of planes going there...whereas l doubt that for Rochester.....
if you are driving...then you have more flexibility. tdrell

Thank you, @tdrell. I'm not yet on Medicare - that's till a few years off. I do have insurance through work, but Kaiser would have to refer us to another specialist, and I've already asked about that, so that means out-of-pocket. My husband has already been diagnosed with MAC, as two sputum samples indicating the infection, and he has two CT scans (one from March, then second in May). He's mainly looking for a second opinion. I don't know if that will require extensive additional testing, or simply an appointment with a doctor. Perhaps he could do a conference call.
I will look for the NJH YouTube videos.
I will need to fly from San Jose, CA to Denver, and, you're right, there are a lot of flights going there. I have been tracking the costs of flights to Rochester, and now it's $279, which is not bad.

@debbiec hi just read your posting I also live in Florida in Boynton Beach and recently diagnosed where do you live ? I’m not on any meds I feel fine but nervous about what I have and if and when I cough let me know where you live and do you go to support group I heard about in Ft Lauderdale ?

I too have rheumatoid arthritis and was on Humira for 13 years. Had to stop it in 2019 when I was infected with haemophilus in my lung. Now I am infected with something else, mac so far is negative. They are still testing. I stopped the methotrexate now too. Make sure you have a pulmonologist who understands BE. No need for a visit to a special facility if you have that.