Getting desperate~! Am i crazy?

mysterygrl19

New member
Thank you for all your suggestions. I do not get fluids in the hospital, and my CRP level (inflamation) was .43 (.42 is normal)The same bugs have been growing out over and over. Nothing new at all.
Allergies has crossed my mind, since I do notice nasal drainage more at home, but I have tried benedryl for a few weeks at a time, shampooed the carpets etc, with no change.
Heather 19 w/cf cfrd
 

mysterygrl19

New member
Thank you for all your suggestions. I do not get fluids in the hospital, and my CRP level (inflamation) was .43 (.42 is normal)The same bugs have been growing out over and over. Nothing new at all.
Allergies has crossed my mind, since I do notice nasal drainage more at home, but I have tried benedryl for a few weeks at a time, shampooed the carpets etc, with no change.
Heather 19 w/cf cfrd
 

mysterygrl19

New member
Thank you for all your suggestions. I do not get fluids in the hospital, and my CRP level (inflamation) was .43 (.42 is normal)The same bugs have been growing out over and over. Nothing new at all.
Allergies has crossed my mind, since I do notice nasal drainage more at home, but I have tried benedryl for a few weeks at a time, shampooed the carpets etc, with no change.
Heather 19 w/cf cfrd
 

mysterygrl19

New member
Thank you for all your suggestions. I do not get fluids in the hospital, and my CRP level (inflamation) was .43 (.42 is normal)The same bugs have been growing out over and over. Nothing new at all.
Allergies has crossed my mind, since I do notice nasal drainage more at home, but I have tried benedryl for a few weeks at a time, shampooed the carpets etc, with no change.
Heather 19 w/cf cfrd
 

mysterygrl19

New member
Thank you for all your suggestions. I do not get fluids in the hospital, and my CRP level (inflamation) was .43 (.42 is normal)The same bugs have been growing out over and over. Nothing new at all.
<br />Allergies has crossed my mind, since I do notice nasal drainage more at home, but I have tried benedryl for a few weeks at a time, shampooed the carpets etc, with no change.
<br />Heather 19 w/cf cfrd
 

Nightwriter

New member
From what I know (I'm no expert) you can have a low CRP level and still have inflammation. If it were as simple as taking a CRP test for for identifying inflammation, doctors would have patients take that test BEFORE prescribing potentially harmful prednisone which is used to reduce inflamation. They would do this test first before of testing for allergies. But they don't, because I don't think they think it's definitive. However, my curiosity about CRP levels has now been peaked and I will ask my doctor why this test, like a sed rate cannot be used definitively to measure inflamation.

And even if CRPlevels were high, none of them can tell where specific inflamation is -- you could have something like ginigivitis and it would come up high. So high numbers may not help much in the test either. I know there is still some controversy on how to use CPR levels because the test is still fairly new.

And as far as allergies affecting you, especially since you notice more nasal drainage at home, it is a possiblity that you have them. There are so many many things that can be affecting you, not just a few things. And even if you were able to identify them, and addresss them, you are not going to see an instant change overnight. Unfortunately it can be a slow process.

CRP is only one marker of inflammation and is most helpful in predicting heart problems as well as being used to help identify acute inflamation as well as a few other uses.

I do hope that you figure out what is making you feel ill and that you start feeling better.
 

Nightwriter

New member
From what I know (I'm no expert) you can have a low CRP level and still have inflammation. If it were as simple as taking a CRP test for for identifying inflammation, doctors would have patients take that test BEFORE prescribing potentially harmful prednisone which is used to reduce inflamation. They would do this test first before of testing for allergies. But they don't, because I don't think they think it's definitive. However, my curiosity about CRP levels has now been peaked and I will ask my doctor why this test, like a sed rate cannot be used definitively to measure inflamation.

And even if CRPlevels were high, none of them can tell where specific inflamation is -- you could have something like ginigivitis and it would come up high. So high numbers may not help much in the test either. I know there is still some controversy on how to use CPR levels because the test is still fairly new.

And as far as allergies affecting you, especially since you notice more nasal drainage at home, it is a possiblity that you have them. There are so many many things that can be affecting you, not just a few things. And even if you were able to identify them, and addresss them, you are not going to see an instant change overnight. Unfortunately it can be a slow process.

CRP is only one marker of inflammation and is most helpful in predicting heart problems as well as being used to help identify acute inflamation as well as a few other uses.

I do hope that you figure out what is making you feel ill and that you start feeling better.
 

Nightwriter

New member
From what I know (I'm no expert) you can have a low CRP level and still have inflammation. If it were as simple as taking a CRP test for for identifying inflammation, doctors would have patients take that test BEFORE prescribing potentially harmful prednisone which is used to reduce inflamation. They would do this test first before of testing for allergies. But they don't, because I don't think they think it's definitive. However, my curiosity about CRP levels has now been peaked and I will ask my doctor why this test, like a sed rate cannot be used definitively to measure inflamation.

And even if CRPlevels were high, none of them can tell where specific inflamation is -- you could have something like ginigivitis and it would come up high. So high numbers may not help much in the test either. I know there is still some controversy on how to use CPR levels because the test is still fairly new.

And as far as allergies affecting you, especially since you notice more nasal drainage at home, it is a possiblity that you have them. There are so many many things that can be affecting you, not just a few things. And even if you were able to identify them, and addresss them, you are not going to see an instant change overnight. Unfortunately it can be a slow process.

CRP is only one marker of inflammation and is most helpful in predicting heart problems as well as being used to help identify acute inflamation as well as a few other uses.

I do hope that you figure out what is making you feel ill and that you start feeling better.
 

Nightwriter

New member
From what I know (I'm no expert) you can have a low CRP level and still have inflammation. If it were as simple as taking a CRP test for for identifying inflammation, doctors would have patients take that test BEFORE prescribing potentially harmful prednisone which is used to reduce inflamation. They would do this test first before of testing for allergies. But they don't, because I don't think they think it's definitive. However, my curiosity about CRP levels has now been peaked and I will ask my doctor why this test, like a sed rate cannot be used definitively to measure inflamation.

And even if CRPlevels were high, none of them can tell where specific inflamation is -- you could have something like ginigivitis and it would come up high. So high numbers may not help much in the test either. I know there is still some controversy on how to use CPR levels because the test is still fairly new.

And as far as allergies affecting you, especially since you notice more nasal drainage at home, it is a possiblity that you have them. There are so many many things that can be affecting you, not just a few things. And even if you were able to identify them, and addresss them, you are not going to see an instant change overnight. Unfortunately it can be a slow process.

CRP is only one marker of inflammation and is most helpful in predicting heart problems as well as being used to help identify acute inflamation as well as a few other uses.

I do hope that you figure out what is making you feel ill and that you start feeling better.
 

Nightwriter

New member
From what I know (I'm no expert) you can have a low CRP level and still have inflammation. If it were as simple as taking a CRP test for for identifying inflammation, doctors would have patients take that test BEFORE prescribing potentially harmful prednisone which is used to reduce inflamation. They would do this test first before of testing for allergies. But they don't, because I don't think they think it's definitive. However, my curiosity about CRP levels has now been peaked and I will ask my doctor why this test, like a sed rate cannot be used definitively to measure inflamation.
<br />
<br />And even if CRPlevels were high, none of them can tell where specific inflamation is -- you could have something like ginigivitis and it would come up high. So high numbers may not help much in the test either. I know there is still some controversy on how to use CPR levels because the test is still fairly new.
<br />
<br />And as far as allergies affecting you, especially since you notice more nasal drainage at home, it is a possiblity that you have them. There are so many many things that can be affecting you, not just a few things. And even if you were able to identify them, and addresss them, you are not going to see an instant change overnight. Unfortunately it can be a slow process.
<br />
<br />CRP is only one marker of inflammation and is most helpful in predicting heart problems as well as being used to help identify acute inflamation as well as a few other uses.
<br />
<br />I do hope that you figure out what is making you feel ill and that you start feeling better.
 

Uli

New member
Maybe you are "overdoing" it at home, working, cleaning, cooking etc....just too much for the body. At the clinic with nothing to do than rest your body recovers.
It could also be a flare up of mono, have you been tested for that?

Uli,46, Germany
 

Uli

New member
Maybe you are "overdoing" it at home, working, cleaning, cooking etc....just too much for the body. At the clinic with nothing to do than rest your body recovers.
It could also be a flare up of mono, have you been tested for that?

Uli,46, Germany
 

Uli

New member
Maybe you are "overdoing" it at home, working, cleaning, cooking etc....just too much for the body. At the clinic with nothing to do than rest your body recovers.
It could also be a flare up of mono, have you been tested for that?

Uli,46, Germany
 

Uli

New member
Maybe you are "overdoing" it at home, working, cleaning, cooking etc....just too much for the body. At the clinic with nothing to do than rest your body recovers.
It could also be a flare up of mono, have you been tested for that?

Uli,46, Germany
 

Uli

New member
Maybe you are "overdoing" it at home, working, cleaning, cooking etc....just too much for the body. At the clinic with nothing to do than rest your body recovers.
<br />It could also be a flare up of mono, have you been tested for that?
<br />
<br />Uli,46, Germany
 

Diane

New member
OH Heather i know how frustrating fevers can be. I've had b.cepacia for a bit over 11 years now and unexplained fevers are one thing i have had ever since getting cepacia. In fact it had a lot to do with my diagnosis of b.cepacia. I felt ok except for being horribly tired and maybe coughing a lot more than usual, but the ongoing fevers every single day , same time of day like clockwork was a huge red flag that it wasnt just normal cf acting up. Knock on wood i only had a fever of 104 one night and it never returned so my Dr. figured it was a 24 hour virus . BUt i do tend to get the low grade fevers a lot (99.4 - 99.6). If io start getting fevers above 100. its usually time to get more aggressive with my treatments and possibly go on iv's. Have they done a recent sputum culture on you? If not , that might be a good idea to get one to be sure there isnt something new into the mix. I hope you can get to the bottom of whats going on soon. Better yet i hope it all just stops on its own.
 

Diane

New member
OH Heather i know how frustrating fevers can be. I've had b.cepacia for a bit over 11 years now and unexplained fevers are one thing i have had ever since getting cepacia. In fact it had a lot to do with my diagnosis of b.cepacia. I felt ok except for being horribly tired and maybe coughing a lot more than usual, but the ongoing fevers every single day , same time of day like clockwork was a huge red flag that it wasnt just normal cf acting up. Knock on wood i only had a fever of 104 one night and it never returned so my Dr. figured it was a 24 hour virus . BUt i do tend to get the low grade fevers a lot (99.4 - 99.6). If io start getting fevers above 100. its usually time to get more aggressive with my treatments and possibly go on iv's. Have they done a recent sputum culture on you? If not , that might be a good idea to get one to be sure there isnt something new into the mix. I hope you can get to the bottom of whats going on soon. Better yet i hope it all just stops on its own.
 

Diane

New member
OH Heather i know how frustrating fevers can be. I've had b.cepacia for a bit over 11 years now and unexplained fevers are one thing i have had ever since getting cepacia. In fact it had a lot to do with my diagnosis of b.cepacia. I felt ok except for being horribly tired and maybe coughing a lot more than usual, but the ongoing fevers every single day , same time of day like clockwork was a huge red flag that it wasnt just normal cf acting up. Knock on wood i only had a fever of 104 one night and it never returned so my Dr. figured it was a 24 hour virus . BUt i do tend to get the low grade fevers a lot (99.4 - 99.6). If io start getting fevers above 100. its usually time to get more aggressive with my treatments and possibly go on iv's. Have they done a recent sputum culture on you? If not , that might be a good idea to get one to be sure there isnt something new into the mix. I hope you can get to the bottom of whats going on soon. Better yet i hope it all just stops on its own.
 

Diane

New member
OH Heather i know how frustrating fevers can be. I've had b.cepacia for a bit over 11 years now and unexplained fevers are one thing i have had ever since getting cepacia. In fact it had a lot to do with my diagnosis of b.cepacia. I felt ok except for being horribly tired and maybe coughing a lot more than usual, but the ongoing fevers every single day , same time of day like clockwork was a huge red flag that it wasnt just normal cf acting up. Knock on wood i only had a fever of 104 one night and it never returned so my Dr. figured it was a 24 hour virus . BUt i do tend to get the low grade fevers a lot (99.4 - 99.6). If io start getting fevers above 100. its usually time to get more aggressive with my treatments and possibly go on iv's. Have they done a recent sputum culture on you? If not , that might be a good idea to get one to be sure there isnt something new into the mix. I hope you can get to the bottom of whats going on soon. Better yet i hope it all just stops on its own.
 

Diane

New member
OH Heather i know how frustrating fevers can be. I've had b.cepacia for a bit over 11 years now and unexplained fevers are one thing i have had ever since getting cepacia. In fact it had a lot to do with my diagnosis of b.cepacia. I felt ok except for being horribly tired and maybe coughing a lot more than usual, but the ongoing fevers every single day , same time of day like clockwork was a huge red flag that it wasnt just normal cf acting up. Knock on wood i only had a fever of 104 one night and it never returned so my Dr. figured it was a 24 hour virus . BUt i do tend to get the low grade fevers a lot (99.4 - 99.6). If io start getting fevers above 100. its usually time to get more aggressive with my treatments and possibly go on iv's. Have they done a recent sputum culture on you? If not , that might be a good idea to get one to be sure there isnt something new into the mix. I hope you can get to the bottom of whats going on soon. Better yet i hope it all just stops on its own.
 
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