regardless of its cause, and most likely docs will be unable to distinguish the cause of your reflux as MAC or the hiatus hernia, I agree that d/c'ing your reflux med is unwise. If it's not working well or causing unwanted side effects (which happened to me w/omeprizol) try another med...

Agree that hypothetically, anecdotally, they're connected. I also give great weight to the opinion of someone like Dr. Aksamit. Neither changes the fact that until clinically proven we're all still guessing... just as NJH first stated increasing water heater to 140 then after more research learned that can cause a heat-resistant form of MAC so corrected it back to the usual 120-130, even the best are left with guessing and hypothesizing without the research dollars to know with greater certainty.... Water....soil...GERD...hot tubs... I'm sure Doc Aksamit would agree that we can't prevent the spread of it without research...

God willing there will be some bright researcher out there who will find an antibiotic or antibiotics to cure us and also invent a vaccine for everyone else. Irene

Its a very tricky situation, when we take GERD meds it stops our acid production, and acid is what will kill any MAC bacteria which reaches our stomach so if theres less acid it doesnt kill the bacteia. Nothing is easy with this MAC unfortunatly. Heres to a quick easy cure soon for all of us!

@gaylejean, Gayle, based on the experience of others on our Forum .. I might suggest you at least elevate your bed :
Prop up the bed. When you stick blocks under the head of your bed and raise it 6 to 8 inches, gravity will prevent the acids in your stomach from flowing into the esophagus during the night. Tight waistbands can aggravate your GERD symptoms. Wear looser clothing, especially at night. My thinking per the above is raising your bed could at least be help .. then just be VERY vigilant! NO ONE knows just how any of us got our MAC .. GERDS is just ONE suspected way.

But as @windwalker .. Terri says below . . PERSONALLY I would NEVER stop with that medication without discussing it with my MAC doctor .. because a Terri says .. GERD can be "silent". Hope this information helps! Hugs! Katherine

@windwalker .. Terri .. good answer .. sensible. thanks for jumping in! Hugs! Katherine

Heathert, your comment re GERD meds stopping stomach acidity therefore MAC bacterium getting into stomach...usually thru drinking water are not destroyed by acidity and therefore if stomach contents ( which contain live MAC) thanks to GERD is aspirated into lungs...they may set up house in the lungs.
The final summary of my workup at NJH contained the instructions to wean off taking Nexium ( so I will go back to having acidic gastric juices) and use tums etc periodically if needed. Terrid

@tdrell, Terri and @heathert .. I am confused.

Heathert 'your comment re GERD meds stopping stomach acidity therefore MAC bacterium getting into stomach...usually thru drinking water are not destroyed by acidity and therefore if stomach contents ( which contain live MAC) thanks to GERD is aspirated into lungs...they may set up house in the lungs.'

Terri, are you saying NJH said NO Nexium .. even though they told you you got MAC via silent aspiration .. I found your quote "Denver * 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 plus silent aspiration during day into my lungs." ...SO .. Terri, I don't get it WHY they now want you to STOP the method of dealing with the severe GERD.

Hope I'm not stepping on toes .. just want to understand it better for our pages. Hugs to you both! Katherine

Katherine I was surprised to read Dr Huitt instruction on the summary I was sent 2 weeks after I left NJH. Nothing was said to me while I was there re cutting out Nexium.She wrote that I should phaseout taking Nexium over a 4 to 6 week period unless I had ulceration...and could take Tums and ? If I had heartburn as I did this.
I assume her rationale is to restore acidity in my stomach to kill MAC as I drink water containing MAC. So when I aspirate stomach contents into my lungs...there will be no live MAC.Terrid

@tdrell, Terri, you know I am BIG on 'due diligence' .. being your own best advocate .. SO if I was sitting in your shoes I would:
1. sit down .. write out a logical sequence .. your diagnosis .. her summary .. your thoughts etc
2. copy her summary
3. request a clarification/reasoning/purpose .. of "Denver * 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 plus silent aspiration during day into my lungs." AND now you STILL HAVE SEVERE GERDS .. AND they want you off GERDS MEDS????
4. Mail it: PERSONAL ATTN TO: ...

Personally Terri I like things in WRITING .. the doctor has to THINK about what is in writing. THEN give it 2 weeks. If no answer .. you HAVE kept copies of everything. Step 2 .. photo copy EVERYTHING .. label it SECOND REQUEST .. THIRD REQUEST .. UNTIL you get a satisfactory answer!! It is YOUR body!!

I went through thirty months of antibiotic treatment .. ALL THE WHILE on GERD medication. Until/unless you get a GOOD explanation .. DO NOT give up! It is YOUR body! You go girl! Hugs! Katherine