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

@david1952, Hi David, I think this is a question for your doctor .. AND when you have an answer PLEASE share it with us because I think it would be a really good thing to know. I have wondered the same thing. I cough up a LOT of sputum but have really only judged it by how much "yellow" which I have figured meant some type of infection. I think for me I have been so focused on my MAC that I have not spent enough or ANY time talking to my Dr. Aksamit about the Bronchiectasis Only recently when someone mentioned "dry Bronchiectasis" did. I become aware of it .. googled it and learned more about it. Much better I think because "dry" does not become a new breeding ground for mycobacterium to grow.

We can all share information we learn about Bronchiectasis!. Remember Paula shared:
@Paula_MAC2007 Paula RE: Bronchiectasis -- I subscribe to "Bronchiectasis News Today". Lots of good info. Main site: https://bronchiectasisnewstoday.com/
Sample Weekly Digest you can sign up for: http://us5.campaign-archive1.com/?u=52c64784d386bd00ea57ee792&id=33155d084e&e=551e0ae719
You can easily get past issues of the Weekly Digest:
http://us5.campaign-archive2.com/home/?u=52c64784d386bd00ea57ee792&id=d9df0e1c03

Hugs to all!

Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI......multiple tests. My local pulmonologist sent me to local ID doctor in OCtober......but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks.....

I do not show indications of the infection hence do not require treatment.

The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much...I dont have the typical NTM symptoms....fatigue,chills,weight loss,fever....only the cough and mucus.
The final outcome after tests and analysis:

-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ....weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think.....had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell

Hi Kate thank you so much for your reply and encouragement. I do know that this forum is a wonderful asset to all of us suffering the same disease/ infection. I live in Richmond Virginia so the Jewish in Boulder and the Mayo are so very far from me. I'm just trying to hold steady right now. Doesn't seem to be growing . My CT the other day wasn't very remarkable.   Honestly that gave me confidence. I never have any mucus when I cough up the blood it's usually just blood a couple of tablespoons I haven't heard anyone else mention blood... it ends as quickly as it begins these little episodes. Ninety-nine percent of the time my cough is totally unproductive. Usually it's just a dry cough I think mostly associated with post nasal drip. I am not averaging once a month coughing blood I went over 3 months having no episodes..  it's the stress of the unknown..Sent from Yahoo Mail on Android

I'm sorry must of missed this earlier but what does NTM stand for?  GGSent from Yahoo Mail on Android

NTM is non tuberculin mycobacterium. Irene

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Thank you!

Tk u so much for your info. I will look into a second opinion asap

Thank you all for tour support. I mustbif read the post wrong as it said "CAN I CALL YOU Diane" i guess i was. It thinking clearly and undertiod wrong. She was implying to refer to me as Diane. Can I blame it on MAC?

On another note, i undertand people have weight loss, is it a lot? I would nit mind losing some pounds.

Yes there is. I have both. Irene