Question about reflux & late diagnosis

J

Juliet

New member
Oh yeah. I can relate. I had doctors suspect I had an ulcer. I was popping Tums for decades. Back in the 80s I was DXd with Bronchectasis. Irritable Bowel syndrome went undiagnosed for a very long time (I have vivid memories of issues with that as a kid!) I've been on prevacid for about 4 years now and they (CF gastro doc) recently added Nizitadine to the mix. I've had pneumonia over 13 times and bronchitis hundreds of times. I had chronic sinus infection for about 3 straight years. I've had post nasal drip for decades. Allergies, you name it... At one point they thought I had sarcoidoisis. I even had sinus surgery a few years ago (which did help quite a bit I might add). My sweat tests when I was a teenager were in the 'none' to 'borderline' range. I had a MAC infection (took 18 mos of ABX to get rid of those buggers!)

Nobody thought I had CF because of my age, the fact that I'm overweight and I wasn't presenting with 'classic CF symptoms'. (Whatever the heck that means!!) Then in March, at age 43, came the CF diagnosis based on genetic testing. Looking at my genetic results I should have classic severe CF, but I don't. Go figure.

I do believe the link between the acid reflux and the coughing however! If I forget to take my meds for reflux and things flare up, I definitely cough more at night (or when lying down) and feel the irritation just breathing in the acids. But my regular morning clear out the lungs cough is there and has always been there and doesn't really change with the reflux treatment one way or the other.

Sorry to babble on so.... But hope it helps. ~Juliet

PS - I was never tested for sleep apnea.
 
J

Juliet

New member
Oh yeah. I can relate. I had doctors suspect I had an ulcer. I was popping Tums for decades. Back in the 80s I was DXd with Bronchectasis. Irritable Bowel syndrome went undiagnosed for a very long time (I have vivid memories of issues with that as a kid!) I've been on prevacid for about 4 years now and they (CF gastro doc) recently added Nizitadine to the mix. I've had pneumonia over 13 times and bronchitis hundreds of times. I had chronic sinus infection for about 3 straight years. I've had post nasal drip for decades. Allergies, you name it... At one point they thought I had sarcoidoisis. I even had sinus surgery a few years ago (which did help quite a bit I might add). My sweat tests when I was a teenager were in the 'none' to 'borderline' range. I had a MAC infection (took 18 mos of ABX to get rid of those buggers!)

Nobody thought I had CF because of my age, the fact that I'm overweight and I wasn't presenting with 'classic CF symptoms'. (Whatever the heck that means!!) Then in March, at age 43, came the CF diagnosis based on genetic testing. Looking at my genetic results I should have classic severe CF, but I don't. Go figure.

I do believe the link between the acid reflux and the coughing however! If I forget to take my meds for reflux and things flare up, I definitely cough more at night (or when lying down) and feel the irritation just breathing in the acids. But my regular morning clear out the lungs cough is there and has always been there and doesn't really change with the reflux treatment one way or the other.

Sorry to babble on so.... But hope it helps. ~Juliet

PS - I was never tested for sleep apnea.
 
J

Juliet

New member
Oh yeah. I can relate. I had doctors suspect I had an ulcer. I was popping Tums for decades. Back in the 80s I was DXd with Bronchectasis. Irritable Bowel syndrome went undiagnosed for a very long time (I have vivid memories of issues with that as a kid!) I've been on prevacid for about 4 years now and they (CF gastro doc) recently added Nizitadine to the mix. I've had pneumonia over 13 times and bronchitis hundreds of times. I had chronic sinus infection for about 3 straight years. I've had post nasal drip for decades. Allergies, you name it... At one point they thought I had sarcoidoisis. I even had sinus surgery a few years ago (which did help quite a bit I might add). My sweat tests when I was a teenager were in the 'none' to 'borderline' range. I had a MAC infection (took 18 mos of ABX to get rid of those buggers!)

Nobody thought I had CF because of my age, the fact that I'm overweight and I wasn't presenting with 'classic CF symptoms'. (Whatever the heck that means!!) Then in March, at age 43, came the CF diagnosis based on genetic testing. Looking at my genetic results I should have classic severe CF, but I don't. Go figure.

I do believe the link between the acid reflux and the coughing however! If I forget to take my meds for reflux and things flare up, I definitely cough more at night (or when lying down) and feel the irritation just breathing in the acids. But my regular morning clear out the lungs cough is there and has always been there and doesn't really change with the reflux treatment one way or the other.

Sorry to babble on so.... But hope it helps. ~Juliet

PS - I was never tested for sleep apnea.
 
J

Juliet

New member
Oh yeah. I can relate. I had doctors suspect I had an ulcer. I was popping Tums for decades. Back in the 80s I was DXd with Bronchectasis. Irritable Bowel syndrome went undiagnosed for a very long time (I have vivid memories of issues with that as a kid!) I've been on prevacid for about 4 years now and they (CF gastro doc) recently added Nizitadine to the mix. I've had pneumonia over 13 times and bronchitis hundreds of times. I had chronic sinus infection for about 3 straight years. I've had post nasal drip for decades. Allergies, you name it... At one point they thought I had sarcoidoisis. I even had sinus surgery a few years ago (which did help quite a bit I might add). My sweat tests when I was a teenager were in the 'none' to 'borderline' range. I had a MAC infection (took 18 mos of ABX to get rid of those buggers!)

Nobody thought I had CF because of my age, the fact that I'm overweight and I wasn't presenting with 'classic CF symptoms'. (Whatever the heck that means!!) Then in March, at age 43, came the CF diagnosis based on genetic testing. Looking at my genetic results I should have classic severe CF, but I don't. Go figure.

I do believe the link between the acid reflux and the coughing however! If I forget to take my meds for reflux and things flare up, I definitely cough more at night (or when lying down) and feel the irritation just breathing in the acids. But my regular morning clear out the lungs cough is there and has always been there and doesn't really change with the reflux treatment one way or the other.

Sorry to babble on so.... But hope it helps. ~Juliet

PS - I was never tested for sleep apnea.
 
J

Juliet

New member
Oh yeah. I can relate. I had doctors suspect I had an ulcer. I was popping Tums for decades. Back in the 80s I was DXd with Bronchectasis. Irritable Bowel syndrome went undiagnosed for a very long time (I have vivid memories of issues with that as a kid!) I've been on prevacid for about 4 years now and they (CF gastro doc) recently added Nizitadine to the mix. I've had pneumonia over 13 times and bronchitis hundreds of times. I had chronic sinus infection for about 3 straight years. I've had post nasal drip for decades. Allergies, you name it... At one point they thought I had sarcoidoisis. I even had sinus surgery a few years ago (which did help quite a bit I might add). My sweat tests when I was a teenager were in the 'none' to 'borderline' range. I had a MAC infection (took 18 mos of ABX to get rid of those buggers!)
<br />
<br />Nobody thought I had CF because of my age, the fact that I'm overweight and I wasn't presenting with 'classic CF symptoms'. (Whatever the heck that means!!) Then in March, at age 43, came the CF diagnosis based on genetic testing. Looking at my genetic results I should have classic severe CF, but I don't. Go figure.
<br />
<br />I do believe the link between the acid reflux and the coughing however! If I forget to take my meds for reflux and things flare up, I definitely cough more at night (or when lying down) and feel the irritation just breathing in the acids. But my regular morning clear out the lungs cough is there and has always been there and doesn't really change with the reflux treatment one way or the other.
<br />
<br />Sorry to babble on so.... But hope it helps. ~Juliet
<br />
<br />PS - I was never tested for sleep apnea.
 
M

MicheleGazelle

New member
Hi. I was diagnosed a bit over 7 years ago with "atypical" (mild) CF. My oldest son was also diagnosed around that time, the month after I got my results. We both consistenly have sweat chloride results of 41 -- the "borderline" range -- and we have both had at least 2 or 3 genetic tests which turned up nothing. The doctor's at my son's pediatric clinic kept questioning whether or not he Really had CF because he was "too healthy" to have CF. I got less flack because I had to nearly die to finally get diagnosed just before I turned 36: I was bed-ridden for about 3 1/2 years earlier that year and spent about a year at death's door. So it was a little harder to say that I was "too healthy" to have CF. My insurance company denied the request for the more expensive, more comprehensive test from Stanford, so I may never know if I have one of the more obscure but already known genes or if I don't have any known CF genes. But my pulmonologist took a position sort of like "if it walks like a duck and quacks like a duck...." By that I mean he felt that with my medical history and the fact that I was responding positively to CF treatments, it seemed like a no-brainer to him.

Good luck with this.

Oh, also, the reflux/cough thing: being too acid does make the lungs worse. I have heard quite a few people with CF say that the ant-acids they take for their stomach problems also help with their lung problems. So there is very much a connection between the two things.
 
M

MicheleGazelle

New member
Hi. I was diagnosed a bit over 7 years ago with "atypical" (mild) CF. My oldest son was also diagnosed around that time, the month after I got my results. We both consistenly have sweat chloride results of 41 -- the "borderline" range -- and we have both had at least 2 or 3 genetic tests which turned up nothing. The doctor's at my son's pediatric clinic kept questioning whether or not he Really had CF because he was "too healthy" to have CF. I got less flack because I had to nearly die to finally get diagnosed just before I turned 36: I was bed-ridden for about 3 1/2 years earlier that year and spent about a year at death's door. So it was a little harder to say that I was "too healthy" to have CF. My insurance company denied the request for the more expensive, more comprehensive test from Stanford, so I may never know if I have one of the more obscure but already known genes or if I don't have any known CF genes. But my pulmonologist took a position sort of like "if it walks like a duck and quacks like a duck...." By that I mean he felt that with my medical history and the fact that I was responding positively to CF treatments, it seemed like a no-brainer to him.

Good luck with this.

Oh, also, the reflux/cough thing: being too acid does make the lungs worse. I have heard quite a few people with CF say that the ant-acids they take for their stomach problems also help with their lung problems. So there is very much a connection between the two things.
 
M

MicheleGazelle

New member
Hi. I was diagnosed a bit over 7 years ago with "atypical" (mild) CF. My oldest son was also diagnosed around that time, the month after I got my results. We both consistenly have sweat chloride results of 41 -- the "borderline" range -- and we have both had at least 2 or 3 genetic tests which turned up nothing. The doctor's at my son's pediatric clinic kept questioning whether or not he Really had CF because he was "too healthy" to have CF. I got less flack because I had to nearly die to finally get diagnosed just before I turned 36: I was bed-ridden for about 3 1/2 years earlier that year and spent about a year at death's door. So it was a little harder to say that I was "too healthy" to have CF. My insurance company denied the request for the more expensive, more comprehensive test from Stanford, so I may never know if I have one of the more obscure but already known genes or if I don't have any known CF genes. But my pulmonologist took a position sort of like "if it walks like a duck and quacks like a duck...." By that I mean he felt that with my medical history and the fact that I was responding positively to CF treatments, it seemed like a no-brainer to him.

Good luck with this.

Oh, also, the reflux/cough thing: being too acid does make the lungs worse. I have heard quite a few people with CF say that the ant-acids they take for their stomach problems also help with their lung problems. So there is very much a connection between the two things.
 
M

MicheleGazelle

New member
Hi. I was diagnosed a bit over 7 years ago with "atypical" (mild) CF. My oldest son was also diagnosed around that time, the month after I got my results. We both consistenly have sweat chloride results of 41 -- the "borderline" range -- and we have both had at least 2 or 3 genetic tests which turned up nothing. The doctor's at my son's pediatric clinic kept questioning whether or not he Really had CF because he was "too healthy" to have CF. I got less flack because I had to nearly die to finally get diagnosed just before I turned 36: I was bed-ridden for about 3 1/2 years earlier that year and spent about a year at death's door. So it was a little harder to say that I was "too healthy" to have CF. My insurance company denied the request for the more expensive, more comprehensive test from Stanford, so I may never know if I have one of the more obscure but already known genes or if I don't have any known CF genes. But my pulmonologist took a position sort of like "if it walks like a duck and quacks like a duck...." By that I mean he felt that with my medical history and the fact that I was responding positively to CF treatments, it seemed like a no-brainer to him.

Good luck with this.

Oh, also, the reflux/cough thing: being too acid does make the lungs worse. I have heard quite a few people with CF say that the ant-acids they take for their stomach problems also help with their lung problems. So there is very much a connection between the two things.
 
M

MicheleGazelle

New member
Hi. I was diagnosed a bit over 7 years ago with "atypical" (mild) CF. My oldest son was also diagnosed around that time, the month after I got my results. We both consistenly have sweat chloride results of 41 -- the "borderline" range -- and we have both had at least 2 or 3 genetic tests which turned up nothing. The doctor's at my son's pediatric clinic kept questioning whether or not he Really had CF because he was "too healthy" to have CF. I got less flack because I had to nearly die to finally get diagnosed just before I turned 36: I was bed-ridden for about 3 1/2 years earlier that year and spent about a year at death's door. So it was a little harder to say that I was "too healthy" to have CF. My insurance company denied the request for the more expensive, more comprehensive test from Stanford, so I may never know if I have one of the more obscure but already known genes or if I don't have any known CF genes. But my pulmonologist took a position sort of like "if it walks like a duck and quacks like a duck...." By that I mean he felt that with my medical history and the fact that I was responding positively to CF treatments, it seemed like a no-brainer to him.
<br />
<br />Good luck with this.
<br />
<br />Oh, also, the reflux/cough thing: being too acid does make the lungs worse. I have heard quite a few people with CF say that the ant-acids they take for their stomach problems also help with their lung problems. So there is very much a connection between the two things.
 
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