1. < MAC & Bronchiectasis

24 Hr PH test for GERD - question for those who have had this done

Posted by Jen_b @jenblalock, Sep 2, 2017

Tuesday morning I'm going to have a tube inserted for 24 hours to test for GERD. I went to National Jewish who diagnosed GERD as the cause of my bronchiectasis and cavitary lesions. I'm getting this test to confirm this diagnosis. Anyway, I am wondering if I should take someone to drive me home afterward. There is no anesthesia used so I should be able to drive myself, right?

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pamelasc | @pamelasc1 | Oct 2, 2017
In reply to @tdrell "Ling123....l have had GERD for so many years l cannot recall what life was like prior....and..." + (show)
@tdrell

Ling123....l have had GERD for so many years l cannot recall what life was like prior....and have been on Nexium for that time and am trying to wean off it since it is showing to have a long list of evils on the body....also NJH said it Nexium... decreases acidity in stomach which the acid helps destroy the NTM I swallow in WIsconsin water....hence when l have reflux/aspiration from stomach to lungs....the NTM just go into lungs more alive...does that make sense???
tdrell

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Terri - thank you... I found my post and your answer. When your oxygen got low that time you almost had a panic attack, what was it? Was it below 80? Did the airline try to assist you? Pam

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Terri Martin, Volunteer Mentor | @windwalker | Oct 2, 2017
In reply to @tdrell "Ling123....l have had GERD for so many years l cannot recall what life was like prior....and..." + (show)
@tdrell

Ling123....l have had GERD for so many years l cannot recall what life was like prior....and have been on Nexium for that time and am trying to wean off it since it is showing to have a long list of evils on the body....also NJH said it Nexium... decreases acidity in stomach which the acid helps destroy the NTM I swallow in WIsconsin water....hence when l have reflux/aspiration from stomach to lungs....the NTM just go into lungs more alive...does that make sense???
tdrell

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@pamelasc1, Pam, mine dropped to about that. Between 80 & 84. I felt oxygen starved and began to panic. My husband just rubbed my arm and kept telling me to take deep breaths, etc. I did not ask for assistance. That happened during the highest altitude of the flight. I have sworn to never fly again without oxygen.

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Terri Martin, Volunteer Mentor | @windwalker | Oct 2, 2017

@pamelasc1, Pam, that happened like three years ago, so I am not totally sure of how low my oxygen dropped. I only remember that it was frighteningly low.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 5, 2017
In reply to @tdrell "Ling123....l have had GERD for so many years l cannot recall what life was like prior....and..." + (show)
@tdrell

Ling123....l have had GERD for so many years l cannot recall what life was like prior....and have been on Nexium for that time and am trying to wean off it since it is showing to have a long list of evils on the body....also NJH said it Nexium... decreases acidity in stomach which the acid helps destroy the NTM I swallow in WIsconsin water....hence when l have reflux/aspiration from stomach to lungs....the NTM just go into lungs more alive...does that make sense???
tdrell

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@ling123, Ling, do you think you may have contracted your MAC infection from your local water source?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 5, 2017
In reply to @tdrell "Ling123....l have had GERD for so many years l cannot recall what life was like prior....and..." + (show)
@tdrell

Ling123....l have had GERD for so many years l cannot recall what life was like prior....and have been on Nexium for that time and am trying to wean off it since it is showing to have a long list of evils on the body....also NJH said it Nexium... decreases acidity in stomach which the acid helps destroy the NTM I swallow in WIsconsin water....hence when l have reflux/aspiration from stomach to lungs....the NTM just go into lungs more alive...does that make sense???
tdrell

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@tdrell, Hi Terri. Do you think you contracted your MAC infection from your local water source?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 5, 2017
In reply to @windwalker "@pamelasc1, Pam, that happened like three years ago, so I am not totally sure of how..." + (show)
@windwalker

@pamelasc1, Pam, that happened like three years ago, so I am not totally sure of how low my oxygen dropped. I only remember that it was frighteningly low.

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@pamelasc1, Hi Pam! How did your search for an oxygen concentrator go?

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ling123 | @ling123 | Oct 5, 2017
In reply to @tdrell "Ling123....l have had GERD for so many years l cannot recall what life was like prior....and..." + (show)
@tdrell

Ling123....l have had GERD for so many years l cannot recall what life was like prior....and have been on Nexium for that time and am trying to wean off it since it is showing to have a long list of evils on the body....also NJH said it Nexium... decreases acidity in stomach which the acid helps destroy the NTM I swallow in WIsconsin water....hence when l have reflux/aspiration from stomach to lungs....the NTM just go into lungs more alive...does that make sense???
tdrell

Jump to this post

@windwalker Terri, so far there is no definitive answer. I just saw my pulmonary doctor today. He has ordered a CT scan so he can compare the results with the first one that I had in 2014 when I had the scare of coughing up large amount of blood and diagnosed with MAC. I did have a chest X-Ray before my appointment with him and he thought the image of my lung looked pretty normal from the X-Ray. In my previous visits with him, he thought I could have gotten MAC from either the water or the soil as I do work in the garden doing planting, or trans planting, or mulching in spring and fall. But on today's visit, he said he had talked to another doctor and came away with the impression that it was likely that I got it from the water. I also asked him about the possibility that I may have GERD. He said based on my first CT scan in 2014, it is unlikely that I have GERD. But that doesn't mean that I might not have some level of acid reflux without outright symptoms. He said that if I got MAC from water I drank, it might have been aspirated into my lungs due to acid reflux through the night. He suggested that I stay away from tap water a couple of hours before bed to try to prevent that from happening. But he still thinks that the possibility of getting MAC from the soil cannot be excluded at this point.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 7, 2017

@ling123, Hello Ling. The reason I was asking about it is because Wisconsin has one of the highest incidence of MAC. I am wondering if you can get an accurate water test result from your water utility? I looked up your municipal water supplier, and like all others, they are happy to show exact numbers for heavy metals and chemicals, but not for the mycobacteriums. I looked up the water supplier for @tdrell in West Bend, Wis. also. I cannot remember which one had it stated; but, one did state that the mycobacteriums could effect those with low immune systems. If either of you wish to look into it further, the hotline number for the EPA is 800-426-4791 and report to them that there is a serious problem there in Wis. If you need data to back you up on that, I think NTM.org has numbers. The Madison Utility hotline number is: 800-426-4791. @tdrell , there is a number for your municipal water plant too: 262-335-5040 ask for Travis Thull. I'd start by asking for actual mycobacterium identification & counts. I am putting this out there because it is a start to bring this to light to bring attention to it. Wisconsin is a hot pocket for this and it should be addressed. I will dig through my paperwork to see who we can talk to at NTM. I don't know about the rest of you, but I feel like we need to be soldiers at this point.

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2 replies
ling123 | @ling123 | Oct 7, 2017
In reply to @windwalker "@ling123, Hello Ling. The reason I was asking about it is because Wisconsin has one of..." + (show)
@windwalker

@ling123, Hello Ling. The reason I was asking about it is because Wisconsin has one of the highest incidence of MAC. I am wondering if you can get an accurate water test result from your water utility? I looked up your municipal water supplier, and like all others, they are happy to show exact numbers for heavy metals and chemicals, but not for the mycobacteriums. I looked up the water supplier for @tdrell in West Bend, Wis. also. I cannot remember which one had it stated; but, one did state that the mycobacteriums could effect those with low immune systems. If either of you wish to look into it further, the hotline number for the EPA is 800-426-4791 and report to them that there is a serious problem there in Wis. If you need data to back you up on that, I think NTM.org has numbers. The Madison Utility hotline number is: 800-426-4791. @tdrell , there is a number for your municipal water plant too: 262-335-5040 ask for Travis Thull. I'd start by asking for actual mycobacterium identification & counts. I am putting this out there because it is a start to bring this to light to bring attention to it. Wisconsin is a hot pocket for this and it should be addressed. I will dig through my paperwork to see who we can talk to at NTM. I don't know about the rest of you, but I feel like we need to be soldiers at this point.

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@windwalker Thanks for the info, Terri. I will look into this.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 9, 2017
In reply to @windwalker "@ling123, Hello Ling. The reason I was asking about it is because Wisconsin has one of..." + (show)
@windwalker

@ling123, Hello Ling. The reason I was asking about it is because Wisconsin has one of the highest incidence of MAC. I am wondering if you can get an accurate water test result from your water utility? I looked up your municipal water supplier, and like all others, they are happy to show exact numbers for heavy metals and chemicals, but not for the mycobacteriums. I looked up the water supplier for @tdrell in West Bend, Wis. also. I cannot remember which one had it stated; but, one did state that the mycobacteriums could effect those with low immune systems. If either of you wish to look into it further, the hotline number for the EPA is 800-426-4791 and report to them that there is a serious problem there in Wis. If you need data to back you up on that, I think NTM.org has numbers. The Madison Utility hotline number is: 800-426-4791. @tdrell , there is a number for your municipal water plant too: 262-335-5040 ask for Travis Thull. I'd start by asking for actual mycobacterium identification & counts. I am putting this out there because it is a start to bring this to light to bring attention to it. Wisconsin is a hot pocket for this and it should be addressed. I will dig through my paperwork to see who we can talk to at NTM. I don't know about the rest of you, but I feel like we need to be soldiers at this point.

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@ling123, Ling, when I was looking up your water supplier, I also poked around the visitors site for your city. Madison looked like a beautiful city. It looked like it would have a lot of cultural events there also. Do you enjoy living there?

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