I need some input and support desperately!!!

[LeneSouthAfrica]

I am sure your doctor knows what he is doing, but 2 things come to mind that could have been missed (with cf, I have learnt that everything affects everything else - something unrelated could be causing breathlessness for instance)
1.) have you had a glucose tolerance test for CF diabetes?
2.) if you are desatting so badly with exercise, has your sleeping O2 saturation been checked? Or are you already using oxygen for sleeping? You could be getting poor quality sleep which does not allow your body to recover properly and then everything goes downhill

 

[LeneSouthAfrica]

I am sure your doctor knows what he is doing, but 2 things come to mind that could have been missed (with cf, I have learnt that everything affects everything else - something unrelated could be causing breathlessness for instance)
1.) have you had a glucose tolerance test for CF diabetes?
2.) if you are desatting so badly with exercise, has your sleeping O2 saturation been checked? Or are you already using oxygen for sleeping? You could be getting poor quality sleep which does not allow your body to recover properly and then everything goes downhill

 

[LeneSouthAfrica]

I am sure your doctor knows what he is doing, but 2 things come to mind that could have been missed (with cf, I have learnt that everything affects everything else - something unrelated could be causing breathlessness for instance)
1.) have you had a glucose tolerance test for CF diabetes?
2.) if you are desatting so badly with exercise, has your sleeping O2 saturation been checked? Or are you already using oxygen for sleeping? You could be getting poor quality sleep which does not allow your body to recover properly and then everything goes downhill

 

[LeneSouthAfrica]

I am sure your doctor knows what he is doing, but 2 things come to mind that could have been missed (with cf, I have learnt that everything affects everything else - something unrelated could be causing breathlessness for instance)
1.) have you had a glucose tolerance test for CF diabetes?
2.) if you are desatting so badly with exercise, has your sleeping O2 saturation been checked? Or are you already using oxygen for sleeping? You could be getting poor quality sleep which does not allow your body to recover properly and then everything goes downhill

 

[LeneSouthAfrica]

I am sure your doctor knows what he is doing, but 2 things come to mind that could have been missed (with cf, I have learnt that everything affects everything else - something unrelated could be causing breathlessness for instance)
<br />1.) have you had a glucose tolerance test for CF diabetes?
<br />2.) if you are desatting so badly with exercise, has your sleeping O2 saturation been checked? Or are you already using oxygen for sleeping? You could be getting poor quality sleep which does not allow your body to recover properly and then everything goes downhill
<br />

 

[coltsfan715]

when I was in peds I was on a treatment that had me taking tobi on and then levaquin on. Then after about 6-8 months I developed an allergy to levaquin and had some serious issues with it so they switched me to Cipro. I know it makes little sense that cipro and leva are in the same family and I am allergic to one and not the other - no one can explain it but tis the way it is.

I was also on BactrimDS as a maintenance drug for years to treat my MRSA. I initially thought it did nothing but when my adult doc took me off it I started getting sick with MRSA related infections more frequently so I am thinking that the Bactrim never took the MRSA away but did keep it under control.

Linds

 

[coltsfan715]

when I was in peds I was on a treatment that had me taking tobi on and then levaquin on. Then after about 6-8 months I developed an allergy to levaquin and had some serious issues with it so they switched me to Cipro. I know it makes little sense that cipro and leva are in the same family and I am allergic to one and not the other - no one can explain it but tis the way it is.

I was also on BactrimDS as a maintenance drug for years to treat my MRSA. I initially thought it did nothing but when my adult doc took me off it I started getting sick with MRSA related infections more frequently so I am thinking that the Bactrim never took the MRSA away but did keep it under control.

Linds

 

[coltsfan715]

when I was in peds I was on a treatment that had me taking tobi on and then levaquin on. Then after about 6-8 months I developed an allergy to levaquin and had some serious issues with it so they switched me to Cipro. I know it makes little sense that cipro and leva are in the same family and I am allergic to one and not the other - no one can explain it but tis the way it is.

I was also on BactrimDS as a maintenance drug for years to treat my MRSA. I initially thought it did nothing but when my adult doc took me off it I started getting sick with MRSA related infections more frequently so I am thinking that the Bactrim never took the MRSA away but did keep it under control.

Linds

 

[coltsfan715]

when I was in peds I was on a treatment that had me taking tobi on and then levaquin on. Then after about 6-8 months I developed an allergy to levaquin and had some serious issues with it so they switched me to Cipro. I know it makes little sense that cipro and leva are in the same family and I am allergic to one and not the other - no one can explain it but tis the way it is.

I was also on BactrimDS as a maintenance drug for years to treat my MRSA. I initially thought it did nothing but when my adult doc took me off it I started getting sick with MRSA related infections more frequently so I am thinking that the Bactrim never took the MRSA away but did keep it under control.

Linds

 

[coltsfan715]

when I was in peds I was on a treatment that had me taking tobi on and then levaquin on. Then after about 6-8 months I developed an allergy to levaquin and had some serious issues with it so they switched me to Cipro. I know it makes little sense that cipro and leva are in the same family and I am allergic to one and not the other - no one can explain it but tis the way it is.
<br />
<br />I was also on BactrimDS as a maintenance drug for years to treat my MRSA. I initially thought it did nothing but when my adult doc took me off it I started getting sick with MRSA related infections more frequently so I am thinking that the Bactrim never took the MRSA away but did keep it under control.
<br />
<br />Linds

 

[coltsfan715]

Jeff I would maybe ask your doc if you could get a general allergy test. I would also ask if it was possible to test you for allergies related to meds you are taking.

Sometimes dairy allergies can cause issues too. I say that and I know you would think that would have happened before now but my mom has a dairy allergy and didn't start having issues until about 10 years ago if that... and she is in her late 40s.

Linds

 

[coltsfan715]

Jeff I would maybe ask your doc if you could get a general allergy test. I would also ask if it was possible to test you for allergies related to meds you are taking.

Sometimes dairy allergies can cause issues too. I say that and I know you would think that would have happened before now but my mom has a dairy allergy and didn't start having issues until about 10 years ago if that... and she is in her late 40s.

Linds

 

[coltsfan715]

Jeff I would maybe ask your doc if you could get a general allergy test. I would also ask if it was possible to test you for allergies related to meds you are taking.

Sometimes dairy allergies can cause issues too. I say that and I know you would think that would have happened before now but my mom has a dairy allergy and didn't start having issues until about 10 years ago if that... and she is in her late 40s.

Linds

 

[coltsfan715]

Jeff I would maybe ask your doc if you could get a general allergy test. I would also ask if it was possible to test you for allergies related to meds you are taking.

Sometimes dairy allergies can cause issues too. I say that and I know you would think that would have happened before now but my mom has a dairy allergy and didn't start having issues until about 10 years ago if that... and she is in her late 40s.

Linds

 

[coltsfan715]

Jeff I would maybe ask your doc if you could get a general allergy test. I would also ask if it was possible to test you for allergies related to meds you are taking.
<br />
<br />Sometimes dairy allergies can cause issues too. I say that and I know you would think that would have happened before now but my mom has a dairy allergy and didn't start having issues until about 10 years ago if that... and she is in her late 40s.
<br />
<br />Linds
<br />