how do you know when you need enzymes?

N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

Was there ever a panc suffic. double delta really?</end quote></div>

i feel like at this point there is a variation to everything. nothing is typical.....

and as we know, clinical outcomes aren't based solely on our CF mutations. modifier genes affect so much.


look at Q and Mel.... the double D508 (there are other Deltas out there like 507i so saying double delta can be misleading) crew who clearly have lived well past many others with their genotype.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

Was there ever a panc suffic. double delta really?</end quote></div>

i feel like at this point there is a variation to everything. nothing is typical.....

and as we know, clinical outcomes aren't based solely on our CF mutations. modifier genes affect so much.


look at Q and Mel.... the double D508 (there are other Deltas out there like 507i so saying double delta can be misleading) crew who clearly have lived well past many others with their genotype.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

Was there ever a panc suffic. double delta really?</end quote></div>

i feel like at this point there is a variation to everything. nothing is typical.....

and as we know, clinical outcomes aren't based solely on our CF mutations. modifier genes affect so much.


look at Q and Mel.... the double D508 (there are other Deltas out there like 507i so saying double delta can be misleading) crew who clearly have lived well past many others with their genotype.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

Was there ever a panc suffic. double delta really?</end quote>

i feel like at this point there is a variation to everything. nothing is typical.....

and as we know, clinical outcomes aren't based solely on our CF mutations. modifier genes affect so much.


look at Q and Mel.... the double D508 (there are other Deltas out there like 507i so saying double delta can be misleading) crew who clearly have lived well past many others with their genotype.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

Was there ever a panc suffic. double delta really?</end quote>

i feel like at this point there is a variation to everything. nothing is typical.....

and as we know, clinical outcomes aren't based solely on our CF mutations. modifier genes affect so much.


look at Q and Mel.... the double D508 (there are other Deltas out there like 507i so saying double delta can be misleading) crew who clearly have lived well past many others with their genotype.
 
L

LouLou

New member
True indeed. Still curious though if there ever has been a DDF508 patient that through fecal fat analysis came up PS.
 
L

LouLou

New member
True indeed. Still curious though if there ever has been a DDF508 patient that through fecal fat analysis came up PS.
 
L

LouLou

New member
True indeed. Still curious though if there ever has been a DDF508 patient that through fecal fat analysis came up PS.
 
L

LouLou

New member
True indeed. Still curious though if there ever has been a DDF508 patient that through fecal fat analysis came up PS.
 
L

LouLou

New member
True indeed. Still curious though if there ever has been a DDF508 patient that through fecal fat analysis came up PS.
 
M

moxie1

Guest
Hi,

I am double delta F 508 and I was pancreatic sufficient for most of my life.

I started taking enzymes in my late 20's because my protein levels were low (I was not absorbing enough)

I only take 2 Ultrase MT20 with my meals. If I happen to have left home without them, I still do okay.

BTW, I am 32 years old, have had cepacia (the worst kind) for over 10 years and still have an FEV1 in the 70's.

I serve an awesome God!
 
M

moxie1

Guest
Hi,

I am double delta F 508 and I was pancreatic sufficient for most of my life.

I started taking enzymes in my late 20's because my protein levels were low (I was not absorbing enough)

I only take 2 Ultrase MT20 with my meals. If I happen to have left home without them, I still do okay.

BTW, I am 32 years old, have had cepacia (the worst kind) for over 10 years and still have an FEV1 in the 70's.

I serve an awesome God!
 
M

moxie1

Guest
Hi,

I am double delta F 508 and I was pancreatic sufficient for most of my life.

I started taking enzymes in my late 20's because my protein levels were low (I was not absorbing enough)

I only take 2 Ultrase MT20 with my meals. If I happen to have left home without them, I still do okay.

BTW, I am 32 years old, have had cepacia (the worst kind) for over 10 years and still have an FEV1 in the 70's.

I serve an awesome God!
 
M

moxie1

Guest
Hi,

I am double delta F 508 and I was pancreatic sufficient for most of my life.

I started taking enzymes in my late 20's because my protein levels were low (I was not absorbing enough)

I only take 2 Ultrase MT20 with my meals. If I happen to have left home without them, I still do okay.

BTW, I am 32 years old, have had cepacia (the worst kind) for over 10 years and still have an FEV1 in the 70's.

I serve an awesome God!
 
M

moxie1

Guest
Hi,

I am double delta F 508 and I was pancreatic sufficient for most of my life.

I started taking enzymes in my late 20's because my protein levels were low (I was not absorbing enough)

I only take 2 Ultrase MT20 with my meals. If I happen to have left home without them, I still do okay.

BTW, I am 32 years old, have had cepacia (the worst kind) for over 10 years and still have an FEV1 in the 70's.

I serve an awesome God!
 
C

cheerfulpuppies

Member
As everyone said you need enzymes, nothing new, the doctor already called them in. All I can say is that for a couple of years I stopped taking my enzymes too but that was because I was stupid, took a break from college, and had no money or insurance for (?) three to four years. When I did get my full time job with insurance I didn't let it lapse, except for a six month period. Even with insurance I couldn't afford my meds until the last year. Based on my experience the body still needs enzymes but the pain subsided because the body adapts to the pain where is seems less severe. The stool may seem more "normal" but the malnutrition and poor vitamin absorption still occur. We think because our weight is stable and we don't feel the stomach pains that we are still healthy.

It could also be that your body was functioning okay enough to break down most things but the strain of the pregnancy on your body maybe the pancrease cannot keep up anymore. It is hard to say and honestly sometimes even the doctors don't have all the answers. For example my thyroid is enlarged, no one knows why, no one seems concerened to do any test to find out why, nor do they have any idea what to do but to watch it. Doctors DON'T have all the answers. And sometimes we feel we need an answer to why when really it doesn't change anything or the course of action. Sometimes we just have to give in to the fact that we take lots of meds but after working as a nurse we realize we really aren't that alone.
 
C

cheerfulpuppies

Member
As everyone said you need enzymes, nothing new, the doctor already called them in. All I can say is that for a couple of years I stopped taking my enzymes too but that was because I was stupid, took a break from college, and had no money or insurance for (?) three to four years. When I did get my full time job with insurance I didn't let it lapse, except for a six month period. Even with insurance I couldn't afford my meds until the last year. Based on my experience the body still needs enzymes but the pain subsided because the body adapts to the pain where is seems less severe. The stool may seem more "normal" but the malnutrition and poor vitamin absorption still occur. We think because our weight is stable and we don't feel the stomach pains that we are still healthy.

It could also be that your body was functioning okay enough to break down most things but the strain of the pregnancy on your body maybe the pancrease cannot keep up anymore. It is hard to say and honestly sometimes even the doctors don't have all the answers. For example my thyroid is enlarged, no one knows why, no one seems concerened to do any test to find out why, nor do they have any idea what to do but to watch it. Doctors DON'T have all the answers. And sometimes we feel we need an answer to why when really it doesn't change anything or the course of action. Sometimes we just have to give in to the fact that we take lots of meds but after working as a nurse we realize we really aren't that alone.
 
C

cheerfulpuppies

Member
As everyone said you need enzymes, nothing new, the doctor already called them in. All I can say is that for a couple of years I stopped taking my enzymes too but that was because I was stupid, took a break from college, and had no money or insurance for (?) three to four years. When I did get my full time job with insurance I didn't let it lapse, except for a six month period. Even with insurance I couldn't afford my meds until the last year. Based on my experience the body still needs enzymes but the pain subsided because the body adapts to the pain where is seems less severe. The stool may seem more "normal" but the malnutrition and poor vitamin absorption still occur. We think because our weight is stable and we don't feel the stomach pains that we are still healthy.

It could also be that your body was functioning okay enough to break down most things but the strain of the pregnancy on your body maybe the pancrease cannot keep up anymore. It is hard to say and honestly sometimes even the doctors don't have all the answers. For example my thyroid is enlarged, no one knows why, no one seems concerened to do any test to find out why, nor do they have any idea what to do but to watch it. Doctors DON'T have all the answers. And sometimes we feel we need an answer to why when really it doesn't change anything or the course of action. Sometimes we just have to give in to the fact that we take lots of meds but after working as a nurse we realize we really aren't that alone.
 
C

cheerfulpuppies

Member
As everyone said you need enzymes, nothing new, the doctor already called them in. All I can say is that for a couple of years I stopped taking my enzymes too but that was because I was stupid, took a break from college, and had no money or insurance for (?) three to four years. When I did get my full time job with insurance I didn't let it lapse, except for a six month period. Even with insurance I couldn't afford my meds until the last year. Based on my experience the body still needs enzymes but the pain subsided because the body adapts to the pain where is seems less severe. The stool may seem more "normal" but the malnutrition and poor vitamin absorption still occur. We think because our weight is stable and we don't feel the stomach pains that we are still healthy.

It could also be that your body was functioning okay enough to break down most things but the strain of the pregnancy on your body maybe the pancrease cannot keep up anymore. It is hard to say and honestly sometimes even the doctors don't have all the answers. For example my thyroid is enlarged, no one knows why, no one seems concerened to do any test to find out why, nor do they have any idea what to do but to watch it. Doctors DON'T have all the answers. And sometimes we feel we need an answer to why when really it doesn't change anything or the course of action. Sometimes we just have to give in to the fact that we take lots of meds but after working as a nurse we realize we really aren't that alone.
 
C

cheerfulpuppies

Member
As everyone said you need enzymes, nothing new, the doctor already called them in. All I can say is that for a couple of years I stopped taking my enzymes too but that was because I was stupid, took a break from college, and had no money or insurance for (?) three to four years. When I did get my full time job with insurance I didn't let it lapse, except for a six month period. Even with insurance I couldn't afford my meds until the last year. Based on my experience the body still needs enzymes but the pain subsided because the body adapts to the pain where is seems less severe. The stool may seem more "normal" but the malnutrition and poor vitamin absorption still occur. We think because our weight is stable and we don't feel the stomach pains that we are still healthy.

It could also be that your body was functioning okay enough to break down most things but the strain of the pregnancy on your body maybe the pancrease cannot keep up anymore. It is hard to say and honestly sometimes even the doctors don't have all the answers. For example my thyroid is enlarged, no one knows why, no one seems concerened to do any test to find out why, nor do they have any idea what to do but to watch it. Doctors DON'T have all the answers. And sometimes we feel we need an answer to why when really it doesn't change anything or the course of action. Sometimes we just have to give in to the fact that we take lots of meds but after working as a nurse we realize we really aren't that alone.
 
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