Very confused

[amyr]

My results came in 2 copies of m470v same as the kids. I did some sort of breathing test (experimental hasn't been approved yet) and it showed inflimation in my lungs. I had my sinus surgery 5 weeks ago and still have a sinus infection I can't get rid of. I am on my 3rd type of antibiotics now for 21 days so we will see.

My daughter is going in for a sinus ct next week and we are waiting for more cultures results she had done last week.

If anyone has the time I would love imput and feedback on our situation. I have read so much info on M470V and what I have found is that it does imapir function enough to be disease causing. If anyone could google it and research it I would really appreciate it. There is no question in my mind that this is why my sister died. She spent so much of her life so sick with no answers as to why. Everything was blamed on allergies and while my family does has allergies that was not the sole reason for her recurrent infections and digestion issues. Nothing ever made sense. Now to me everything makes sense. THANKS!!

 

[amyr]

My results came in 2 copies of m470v same as the kids. I did some sort of breathing test (experimental hasn't been approved yet) and it showed inflimation in my lungs. I had my sinus surgery 5 weeks ago and still have a sinus infection I can't get rid of. I am on my 3rd type of antibiotics now for 21 days so we will see.

My daughter is going in for a sinus ct next week and we are waiting for more cultures results she had done last week.

If anyone has the time I would love imput and feedback on our situation. I have read so much info on M470V and what I have found is that it does imapir function enough to be disease causing. If anyone could google it and research it I would really appreciate it. There is no question in my mind that this is why my sister died. She spent so much of her life so sick with no answers as to why. Everything was blamed on allergies and while my family does has allergies that was not the sole reason for her recurrent infections and digestion issues. Nothing ever made sense. Now to me everything makes sense. THANKS!!

 

[amyr]

My results came in 2 copies of m470v same as the kids. I did some sort of breathing test (experimental hasn't been approved yet) and it showed inflimation in my lungs. I had my sinus surgery 5 weeks ago and still have a sinus infection I can't get rid of. I am on my 3rd type of antibiotics now for 21 days so we will see.

My daughter is going in for a sinus ct next week and we are waiting for more cultures results she had done last week.

If anyone has the time I would love imput and feedback on our situation. I have read so much info on M470V and what I have found is that it does imapir function enough to be disease causing. If anyone could google it and research it I would really appreciate it. There is no question in my mind that this is why my sister died. She spent so much of her life so sick with no answers as to why. Everything was blamed on allergies and while my family does has allergies that was not the sole reason for her recurrent infections and digestion issues. Nothing ever made sense. Now to me everything makes sense. THANKS!!

 

[amyr]

My results came in 2 copies of m470v same as the kids. I did some sort of breathing test (experimental hasn't been approved yet) and it showed inflimation in my lungs. I had my sinus surgery 5 weeks ago and still have a sinus infection I can't get rid of. I am on my 3rd type of antibiotics now for 21 days so we will see.

My daughter is going in for a sinus ct next week and we are waiting for more cultures results she had done last week.

If anyone has the time I would love imput and feedback on our situation. I have read so much info on M470V and what I have found is that it does imapir function enough to be disease causing. If anyone could google it and research it I would really appreciate it. There is no question in my mind that this is why my sister died. She spent so much of her life so sick with no answers as to why. Everything was blamed on allergies and while my family does has allergies that was not the sole reason for her recurrent infections and digestion issues. Nothing ever made sense. Now to me everything makes sense. THANKS!!

 

[amyr]

My results came in 2 copies of m470v same as the kids. I did some sort of breathing test (experimental hasn't been approved yet) and it showed inflimation in my lungs. I had my sinus surgery 5 weeks ago and still have a sinus infection I can't get rid of. I am on my 3rd type of antibiotics now for 21 days so we will see.
<br />
<br />My daughter is going in for a sinus ct next week and we are waiting for more cultures results she had done last week.
<br />
<br />If anyone has the time I would love imput and feedback on our situation. I have read so much info on M470V and what I have found is that it does imapir function enough to be disease causing. If anyone could google it and research it I would really appreciate it. There is no question in my mind that this is why my sister died. She spent so much of her life so sick with no answers as to why. Everything was blamed on allergies and while my family does has allergies that was not the sole reason for her recurrent infections and digestion issues. Nothing ever made sense. Now to me everything makes sense. THANKS!!

 

[hopesiris]

Try calling Steve at Ambry, while he can't give you specific information he should be able to tell you if he knows of any other cases and what the CF was like (mild/moderate/severe).

 

[hopesiris]

Try calling Steve at Ambry, while he can't give you specific information he should be able to tell you if he knows of any other cases and what the CF was like (mild/moderate/severe).

 

[hopesiris]

Try calling Steve at Ambry, while he can't give you specific information he should be able to tell you if he knows of any other cases and what the CF was like (mild/moderate/severe).

 

[hopesiris]

Try calling Steve at Ambry, while he can't give you specific information he should be able to tell you if he knows of any other cases and what the CF was like (mild/moderate/severe).

 

[hopesiris]

Try calling Steve at Ambry, while he can't give you specific information he should be able to tell you if he knows of any other cases and what the CF was like (mild/moderate/severe).

 

[amyr]

He said that it is carried by half the population and is not believed to be disease causing. I have read so much conflicting data more than not saying that it does impair function enough to be disease causing. What adds more confusion is the borderline pancreatic insufficency my son and I have. Any help here would be great!

I'm sure 10 years from now things will be different however as thier mother I will fight to get them what they need now. This is the first time everything makes sense. Steve also said that genetics are just one component to diagnosing the disease.

Thank you to EVERYONE who has read and offered advice. This is an amazing community filled with a wealth of knowledge and resources. First hand experience often is more valuable than any textbook.

 

[amyr]

He said that it is carried by half the population and is not believed to be disease causing. I have read so much conflicting data more than not saying that it does impair function enough to be disease causing. What adds more confusion is the borderline pancreatic insufficency my son and I have. Any help here would be great!

I'm sure 10 years from now things will be different however as thier mother I will fight to get them what they need now. This is the first time everything makes sense. Steve also said that genetics are just one component to diagnosing the disease.

Thank you to EVERYONE who has read and offered advice. This is an amazing community filled with a wealth of knowledge and resources. First hand experience often is more valuable than any textbook.

 

[amyr]

He said that it is carried by half the population and is not believed to be disease causing. I have read so much conflicting data more than not saying that it does impair function enough to be disease causing. What adds more confusion is the borderline pancreatic insufficency my son and I have. Any help here would be great!

I'm sure 10 years from now things will be different however as thier mother I will fight to get them what they need now. This is the first time everything makes sense. Steve also said that genetics are just one component to diagnosing the disease.

Thank you to EVERYONE who has read and offered advice. This is an amazing community filled with a wealth of knowledge and resources. First hand experience often is more valuable than any textbook.

 

[amyr]

He said that it is carried by half the population and is not believed to be disease causing. I have read so much conflicting data more than not saying that it does impair function enough to be disease causing. What adds more confusion is the borderline pancreatic insufficency my son and I have. Any help here would be great!

I'm sure 10 years from now things will be different however as thier mother I will fight to get them what they need now. This is the first time everything makes sense. Steve also said that genetics are just one component to diagnosing the disease.

Thank you to EVERYONE who has read and offered advice. This is an amazing community filled with a wealth of knowledge and resources. First hand experience often is more valuable than any textbook.

 

[amyr]

He said that it is carried by half the population and is not believed to be disease causing. I have read so much conflicting data more than not saying that it does impair function enough to be disease causing. What adds more confusion is the borderline pancreatic insufficency my son and I have. Any help here would be great!
<br />
<br />I'm sure 10 years from now things will be different however as thier mother I will fight to get them what they need now. This is the first time everything makes sense. Steve also said that genetics are just one component to diagnosing the disease.
<br />
<br />Thank you to EVERYONE who has read and offered advice. This is an amazing community filled with a wealth of knowledge and resources. First hand experience often is more valuable than any textbook.

 

[hopesiris]

All I can add is that with my genetics (one severe mutation and one polymorphism), a small percentage of people will have CAVD but no CF symptoms, the majority (about 80%) will have mild-moderate CF and a small percentage will have typical more severe CF. Maybe something similar applies to your situation, which could be why you'd see conflicting info.

 

[hopesiris]

All I can add is that with my genetics (one severe mutation and one polymorphism), a small percentage of people will have CAVD but no CF symptoms, the majority (about 80%) will have mild-moderate CF and a small percentage will have typical more severe CF. Maybe something similar applies to your situation, which could be why you'd see conflicting info.

 

[hopesiris]

All I can add is that with my genetics (one severe mutation and one polymorphism), a small percentage of people will have CAVD but no CF symptoms, the majority (about 80%) will have mild-moderate CF and a small percentage will have typical more severe CF. Maybe something similar applies to your situation, which could be why you'd see conflicting info.

 

[hopesiris]

All I can add is that with my genetics (one severe mutation and one polymorphism), a small percentage of people will have CAVD but no CF symptoms, the majority (about 80%) will have mild-moderate CF and a small percentage will have typical more severe CF. Maybe something similar applies to your situation, which could be why you'd see conflicting info.

 

[hopesiris]

All I can add is that with my genetics (one severe mutation and one polymorphism), a small percentage of people will have CAVD but no CF symptoms, the majority (about 80%) will have mild-moderate CF and a small percentage will have typical more severe CF. Maybe something similar applies to your situation, which could be why you'd see conflicting info.