Cid120,..wow! You certainly have been diligent and thorough trying to find best route for treating the enemy !!
Have you considered trying even yet another opinion ....albeit also top notch...National Jewish Health in Denver ?
Tdrell

@tdrell, I will certainly consider going to Denver to National Jewish Health. I know samples from my bronchoscopy late last May were sent there. I have heard it is one of the best. I need to re-read some past notes. You have gotten good care there?

Cid120....I went there in NJH in January 2017 for a second opinion for the MAC that showed up on bronchoscopy which was done locally in city north of Milwaukee Wi. I had had a cough daily 5pm to 9pm for 2 years. My pulmonologist sent me to infectious Disease Dr who would have immediately put me on the big 3....I told her "No.....I am getting a second opinion" at National Jewish.
The outcome of the 7 day visit over 2 weeks at NJH in Denver revealed
-no reason to treat MAC which had not caused lung infection based on CAT scan and sputum specimens done at NJH.
-indeed I was silently aspirating the MAC from my stomach due to my GERD. Hence found on bronchoscopy....our water in SE Wisconsin has NTM in it!
Dr Huitt gave me Gerd guidelines
- I was also tested to confirm my 30 year Asthma....a Methocholine Challenge test...I do not have asthma.
-also had sleep study overnite there...now on CPAP.
I am on Medicare with a supplement.
I had no bills from my time at NJH.
Tdrell

@tdrell, I will print this and share with my new ID Dr who is considering a "wait and see" approach. Many thanks!!

@cld120 Hi Carolyn. My gosh, I have never seen so many conflicting opinions in all of my life! It is enough to make your head spin. The Big 3 does have positive effects for some people. They are harsh medications; I guess it would have to be to deal with the tough bacteria that we have. My doctor 'has the wait and see approach' also. I am just praying that the new inhaleables come out next year and give us better options. Please keep us posted.

Terri @windwalker , I am 59 years old & thought I was on my way to 14 months on the Big Three UNTIL we added Ethambutol to the Zithromax & Rifampin mix. After just two doses, stabbing skull pains, wavy/unfocused visual disturbances convinced me otherwise. Docs were shocked at my quick, dramatic reaction. Off all MAC meds for at least two months. May not go back on them in spite of a MAC colony in one lung. Sure not gonna risk my vision!

@cld120 Hey Carolyn! What's up with you these days???

Hi Terry....thank you for this valuable information...it’s good to post this periodically for patients that are on the big 3, including myself..

@megan123 Hi Jennifer. Please use @name of the person you are replying to so that your reply connects to that conversation. This reply is floating, therefore I do not know which info you are finding valuable. Thanks!