@123ling, Thank you Ling. Wishing you continued good health as well! Hugs!

windwalker and all.....finally have a new computer.....reading over a lot of the comments, Terri and all others....don't be fooled by the euphoria from the "bursts" that they are ordered in...be aware!
Meanwhile I have a one year follow up apt at NJH ..January 29th 2018.....will be curious to see what their opinion is.....l was told my MAC that was found locally with bronchoscopy was a result of my GERD (sound familiar) and if l work on that....all will be fine...no meds needed,
Hmmmm so a month after that...Feb l acquired a respiratory infection....cough and mucus galore that in spite of treatment with steroids and antibiotics continues 10 months later.
I requested 3 sputums be done for NTM /AFB from local pulmonologist....no signs of MAC but one grew "aerobic actinomycetes" which had no AFB. So onto the local ID doctor who asked a zillion questions and did testing for all kinds of weird things since l acquired the respiratory infection on a two week visit to Arizona. He also sent the above bacteria for more testing,,,,,,and said to return in 3 months which l did last week,
the culture was sent to Un of texas in tyler....their Mycobacterium/Nocardia Research Lab where they further tested the specimen and called it
Tsukamurella Species. and listed the meds it was resistant sensitive to.
I told the ID doctor l would be back to NJH for their opinion....he wants to treat with big 3 antibiotics
CAT scan of chest done at NJH in November showed all stable except l now have "thickened bronchial walls" which apparently can be from inflammation (not bronchiectasis) possibly chronic bronchitis.
I began CPAP in April ......one question that has arisen....could the latest bug be from the equipment....the water reservoir....l have a $300 ozone cleaning machine ....one doctor commented that it does not work on all bacteria.....
another question for NJH....maybe they will culture the machine and tubing ,etc
so folks as we all know....more questions ....maybe answers???? Have a great holiday season....stay away from illness and don't over do
tdrell

@tdrell Oh goodness! What a year you've had! I sure hope that NJH can figure something out (besides GERD diagnosis). Best of luck at your appointment. Who is your doctor?

@tdrell
Reading over your post today the word narcodia popped out at me.
Several years ago I was diagnosed with narcodia. I live in Minnesota and haven't travelled out of Minnesota. I was diagnosed with it before ever being diagnosed with mycobacterrium.
It's pretty rare to my understanding was about 50 people in the USA a year get it.
I was treated for 8 months with sulfa because at that time I had no symptoms.
Then about a year later I was diagnosed again with it and had some major symptoms, my guess was I never really got rid of it the first time. They had done the susceptibilty tests and I was put on a Iv of rocephin for 6 weeks while I inhaled amakacin and took clarithamiacin by mouth. After 6 weeks I quit the Iv and continued the others. I felt better after a month of those. I had no side effects from the clarithamiacin for a year.
They do CT scans of your brain because the nacodia can spread there.
Also I saw where you were taking steroids. Just a note on that my pulminologist wants me to take it only at the lowest amount possible. He has me on one puff now of inhaled steroid a day now. I have taken tablets if I get in big trouble. But he pointed out that they weaken your immune system quite a bit so that these bugs can get ahold in your lungs. Be sure to run this by your Dr. first.
Take care.
Shari

Jenblalick....thanks for your good wishes....Dr Gwen Huitt is my main Dr at NJH. Tdrell

She is my doctor also. You're in good hands. Best and let me know how your check up goes.

Pfists....thanks for sharing....this whole thing is aggravating....I will be curious to see what NJH comes up with as an answer.....as I after 3 years keep coughing and having mucus tdrell

Pfists....I have so many questions for NJH....I won’t be satisfied with the GERD answer... tdrell

Hi @jenblalock I am doing well at the moment. Had my 3 clear sputums but decided to carry on with the meds as long as I can.

@tdrell On that note. I just had a consult with my GI doctor after a 24 hours PH test and a motility test she said I had VERY mild GERD and she doubted that I would be aspirating. While my doctor at NJH said she is 100% sure it's caused by GERD. No one can be 100% sure so that puts me off.