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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
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
Replies to "Folks here is my report after my 6 day workup at National Jewish Health for MAC..."
So then what do they attribute the mucous to? Has that subsided?
My dear Terri! I am SOOOO happy for you .. you are just a terror when you get started .. you are unstoppable! I am SO proud of you .. and SO happy for you!! ALL A PART of you doing your 'due diligence' .. educating yourself .. being your best advocate .. I am so proud of you!
The ONLY question I have is .. will there be ANY follow up? Sputum tests on a semi annual basis that will be cultured? Because ' 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.' The MAC found at that time may be 'stable' .. but my understanding is it can colonize at any time based on many factors .. that MAC did not magically disappear .. so I just hope you have ongoing sputum cultures that verify you are STILL 'stable'
I also have GERDS and sleep with a bed elevated .. it is a great idea! My husband has sleep Apnea .. just make sure to keep the equipment properly cleansed .. that air goes right into the lungs. Make sure you let us know how the culture report come out!
I just am SO happy for you! Thank you for all the good information and letting us know how things went! I am sending you a BIG hug! Katherine
Linda, because our posts are in time sequence .. wish they were not! Wish the posts were all together related to a particular question or post .. that said .. WHO were you asking this question of? Best to start with a name so the person knows who the question is being asked of. Katherine
Sorry Katherine. That was in response to Terri's check up results. Linda
Thank you Linda!
Someone posted that he or she went to a doctor at Mt Sinai Hospital in NY who seemed knowledgeable about MAC. Please mention the doctor's name again.Many thanks.
Congratulation Terry, I'm so happy for you. I'm so glad you don't have to take the 3 meds. I have bad GERD and the meds I'm taking seems not helping. I have the bronchiectasis and MAC also the acid reflux. On meds for 6 months now. I wonder now come to think of it that could happened to me too. Anyway, I'm glad you don't have the MAC. Cila
Hi @cila I also had terrible gerd I was on 2 omeprazole a day and sometimes it diddnt help but now I have been GERD free for a few months and off the meds for GERD, my gastro said I have probably broken the cycle or adjusted to the MAC meds,which is great so hang in there, hopefully it will get better.
fantastic @tdrell great news!
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I'm sorry must of missed this earlier but what does NTM stand for? GGSent from Yahoo Mail on Android