I'm Out Of Ideas...

C

catboogie

New member
hey tara,

instead of looking for a miracle, get back to basics, girl! if you're willing to make some changes, i think you can get yourself feeling better.

i agree with what everyone says that it sounds like you are having inflammation issues. first of all, have you been allergy tested? just a thought...

second of all, what you said with your diet i think is really important. how can you expect your body to fight infection and inflammation when you are feeding it junk??? i highly suggest you read this <a target=_blank class=ftalternatingbarlinklarge href="http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet">Dr. Weil's anti-inflammatory diet</a> to give yourself some tips on ways to eat better to curb inflammation. the way my nutritionist explained it, you need not comply "all or nothing" with this diet. but the more you can do, the better the results are likely to be.

there are other things outside of this anti-inflammatory diet that you can do best prepare your body for what CF and the world throws at it. drinking plenty of water each day, getting enough rest, and exercising (!!!) are VITAL parts of a good CF routine.

good luck!
 
C

catboogie

New member
hey tara,

instead of looking for a miracle, get back to basics, girl! if you're willing to make some changes, i think you can get yourself feeling better.

i agree with what everyone says that it sounds like you are having inflammation issues. first of all, have you been allergy tested? just a thought...

second of all, what you said with your diet i think is really important. how can you expect your body to fight infection and inflammation when you are feeding it junk??? i highly suggest you read this <a target=_blank class=ftalternatingbarlinklarge href="http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet">Dr. Weil's anti-inflammatory diet</a> to give yourself some tips on ways to eat better to curb inflammation. the way my nutritionist explained it, you need not comply "all or nothing" with this diet. but the more you can do, the better the results are likely to be.

there are other things outside of this anti-inflammatory diet that you can do best prepare your body for what CF and the world throws at it. drinking plenty of water each day, getting enough rest, and exercising (!!!) are VITAL parts of a good CF routine.

good luck!
 
C

catboogie

New member
hey tara,

instead of looking for a miracle, get back to basics, girl! if you're willing to make some changes, i think you can get yourself feeling better.

i agree with what everyone says that it sounds like you are having inflammation issues. first of all, have you been allergy tested? just a thought...

second of all, what you said with your diet i think is really important. how can you expect your body to fight infection and inflammation when you are feeding it junk??? i highly suggest you read this <a target=_blank class=ftalternatingbarlinklarge href="http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet">Dr. Weil's anti-inflammatory diet</a> to give yourself some tips on ways to eat better to curb inflammation. the way my nutritionist explained it, you need not comply "all or nothing" with this diet. but the more you can do, the better the results are likely to be.

there are other things outside of this anti-inflammatory diet that you can do best prepare your body for what CF and the world throws at it. drinking plenty of water each day, getting enough rest, and exercising (!!!) are VITAL parts of a good CF routine.

good luck!
 
C

catboogie

New member
hey tara,

instead of looking for a miracle, get back to basics, girl! if you're willing to make some changes, i think you can get yourself feeling better.

i agree with what everyone says that it sounds like you are having inflammation issues. first of all, have you been allergy tested? just a thought...

second of all, what you said with your diet i think is really important. how can you expect your body to fight infection and inflammation when you are feeding it junk??? i highly suggest you read this <a target=_blank class=ftalternatingbarlinklarge href="http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet">Dr. Weil's anti-inflammatory diet</a> to give yourself some tips on ways to eat better to curb inflammation. the way my nutritionist explained it, you need not comply "all or nothing" with this diet. but the more you can do, the better the results are likely to be.

there are other things outside of this anti-inflammatory diet that you can do best prepare your body for what CF and the world throws at it. drinking plenty of water each day, getting enough rest, and exercising (!!!) are VITAL parts of a good CF routine.

good luck!
 
C

catboogie

New member
hey tara,

instead of looking for a miracle, get back to basics, girl! if you're willing to make some changes, i think you can get yourself feeling better.

i agree with what everyone says that it sounds like you are having inflammation issues. first of all, have you been allergy tested? just a thought...

second of all, what you said with your diet i think is really important. how can you expect your body to fight infection and inflammation when you are feeding it junk??? i highly suggest you read this <a target=_blank class=ftalternatingbarlinklarge href="http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet">Dr. Weil's anti-inflammatory diet</a> to give yourself some tips on ways to eat better to curb inflammation. the way my nutritionist explained it, you need not comply "all or nothing" with this diet. but the more you can do, the better the results are likely to be.

there are other things outside of this anti-inflammatory diet that you can do best prepare your body for what CF and the world throws at it. drinking plenty of water each day, getting enough rest, and exercising (!!!) are VITAL parts of a good CF routine.

good luck!
 
B

blindhearted

New member
question, do u have to eat actual cloves of garlic or can u take garlic supp pills? I had someone tell me that garlic helps open up breathing, not talking about PA. They had COPD and used garlic, they said they could tell a difference in their breathing. I've heard it keeps mosquitoes away...in the summer in NC, that would be handy. But I wouldnt want to take it and keep my hubby away like a vampire.
 
B

blindhearted

New member
question, do u have to eat actual cloves of garlic or can u take garlic supp pills? I had someone tell me that garlic helps open up breathing, not talking about PA. They had COPD and used garlic, they said they could tell a difference in their breathing. I've heard it keeps mosquitoes away...in the summer in NC, that would be handy. But I wouldnt want to take it and keep my hubby away like a vampire.
 
B

blindhearted

New member
question, do u have to eat actual cloves of garlic or can u take garlic supp pills? I had someone tell me that garlic helps open up breathing, not talking about PA. They had COPD and used garlic, they said they could tell a difference in their breathing. I've heard it keeps mosquitoes away...in the summer in NC, that would be handy. But I wouldnt want to take it and keep my hubby away like a vampire.
 
B

blindhearted

New member
question, do u have to eat actual cloves of garlic or can u take garlic supp pills? I had someone tell me that garlic helps open up breathing, not talking about PA. They had COPD and used garlic, they said they could tell a difference in their breathing. I've heard it keeps mosquitoes away...in the summer in NC, that would be handy. But I wouldnt want to take it and keep my hubby away like a vampire.
 
B

blindhearted

New member
question, do u have to eat actual cloves of garlic or can u take garlic supp pills? I had someone tell me that garlic helps open up breathing, not talking about PA. They had COPD and used garlic, they said they could tell a difference in their breathing. I've heard it keeps mosquitoes away...in the summer in NC, that would be handy. But I wouldnt want to take it and keep my hubby away like a vampire.
 
S

Sevenstars

New member
Well, when your FEV1 drops like that, do you notice that your chest is tight and you are short of breath, or is it that you are 'junky' and coughing a lot?

If its shortness of breath, I'd recommend talking to your doctor about a prednisone burst like others have suggested and maybe even some maintenance sterioids in a low dose (or a steroid inhaler like flovent?) If you get very congested then you should look at better means of airway clearance - maybe do your vest/acapella/etc for a longer period of time, or see if you can try Pulmozyme or Saline inhalations to make stuff easier to cough up. All of this is assuming that your antibiotics are doing what they were supposed to, and that something else is making you feel bad. If none of that works, ask your doctor if you can try an antibiotic you haven't been on before (or different combination), to see if it'd work better (as long as your bugs are succeptible to it)

Good luck! And thanks everyone for the garlic tips, I will have to try that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
Well, when your FEV1 drops like that, do you notice that your chest is tight and you are short of breath, or is it that you are 'junky' and coughing a lot?

If its shortness of breath, I'd recommend talking to your doctor about a prednisone burst like others have suggested and maybe even some maintenance sterioids in a low dose (or a steroid inhaler like flovent?) If you get very congested then you should look at better means of airway clearance - maybe do your vest/acapella/etc for a longer period of time, or see if you can try Pulmozyme or Saline inhalations to make stuff easier to cough up. All of this is assuming that your antibiotics are doing what they were supposed to, and that something else is making you feel bad. If none of that works, ask your doctor if you can try an antibiotic you haven't been on before (or different combination), to see if it'd work better (as long as your bugs are succeptible to it)

Good luck! And thanks everyone for the garlic tips, I will have to try that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
Well, when your FEV1 drops like that, do you notice that your chest is tight and you are short of breath, or is it that you are 'junky' and coughing a lot?

If its shortness of breath, I'd recommend talking to your doctor about a prednisone burst like others have suggested and maybe even some maintenance sterioids in a low dose (or a steroid inhaler like flovent?) If you get very congested then you should look at better means of airway clearance - maybe do your vest/acapella/etc for a longer period of time, or see if you can try Pulmozyme or Saline inhalations to make stuff easier to cough up. All of this is assuming that your antibiotics are doing what they were supposed to, and that something else is making you feel bad. If none of that works, ask your doctor if you can try an antibiotic you haven't been on before (or different combination), to see if it'd work better (as long as your bugs are succeptible to it)

Good luck! And thanks everyone for the garlic tips, I will have to try that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
Well, when your FEV1 drops like that, do you notice that your chest is tight and you are short of breath, or is it that you are 'junky' and coughing a lot?

If its shortness of breath, I'd recommend talking to your doctor about a prednisone burst like others have suggested and maybe even some maintenance sterioids in a low dose (or a steroid inhaler like flovent?) If you get very congested then you should look at better means of airway clearance - maybe do your vest/acapella/etc for a longer period of time, or see if you can try Pulmozyme or Saline inhalations to make stuff easier to cough up. All of this is assuming that your antibiotics are doing what they were supposed to, and that something else is making you feel bad. If none of that works, ask your doctor if you can try an antibiotic you haven't been on before (or different combination), to see if it'd work better (as long as your bugs are succeptible to it)

Good luck! And thanks everyone for the garlic tips, I will have to try that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Sevenstars

New member
Well, when your FEV1 drops like that, do you notice that your chest is tight and you are short of breath, or is it that you are 'junky' and coughing a lot?

If its shortness of breath, I'd recommend talking to your doctor about a prednisone burst like others have suggested and maybe even some maintenance sterioids in a low dose (or a steroid inhaler like flovent?) If you get very congested then you should look at better means of airway clearance - maybe do your vest/acapella/etc for a longer period of time, or see if you can try Pulmozyme or Saline inhalations to make stuff easier to cough up. All of this is assuming that your antibiotics are doing what they were supposed to, and that something else is making you feel bad. If none of that works, ask your doctor if you can try an antibiotic you haven't been on before (or different combination), to see if it'd work better (as long as your bugs are succeptible to it)

Good luck! And thanks everyone for the garlic tips, I will have to try that. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Aspiemom

Guest
Well, I'm late reading your thread, but when I did I felt like I was reading about myself! Except for the little ones - I'd be dragging, too, if I had twin 3 yr olds to keep up with! Makes me tired just thinking about it!

I have PA, too, resistant to everything oral. Haven't convinced my doc to try some different IV abx - she's stuck on Tobramycin & Meropenum. I just don't feel much better after the abx, so I'm thinking she needs to try something else, but I'm allergic to the Sulfa drugs & had some hives w/ the penicillin line so maybe that narrows it down too much. What line is Zyvox in?

I, too, feel crappy most of the time and I run a lot of 99.5 fevers (my usual is 97) and I have swollen glands a lot (which may be unrelated). I've been on night O2 for the past 3 wks and also during the day when I leave the house or do anything exerting.

About the garlic, doesn't that burn your mouth? I've been trying the Oregano Oil so many on here recommend and that really burns my mouth. We eat a lot of COOKED garlic in the food I prepare, but I assume it needs to be raw. The little bit of raw I've had really burns, so what do you all do? Are the supplements good enough as a recourse?

Tara, I don't have suggestions but I know what you're going through!!!!
 
A

Aspiemom

Guest
Well, I'm late reading your thread, but when I did I felt like I was reading about myself! Except for the little ones - I'd be dragging, too, if I had twin 3 yr olds to keep up with! Makes me tired just thinking about it!

I have PA, too, resistant to everything oral. Haven't convinced my doc to try some different IV abx - she's stuck on Tobramycin & Meropenum. I just don't feel much better after the abx, so I'm thinking she needs to try something else, but I'm allergic to the Sulfa drugs & had some hives w/ the penicillin line so maybe that narrows it down too much. What line is Zyvox in?

I, too, feel crappy most of the time and I run a lot of 99.5 fevers (my usual is 97) and I have swollen glands a lot (which may be unrelated). I've been on night O2 for the past 3 wks and also during the day when I leave the house or do anything exerting.

About the garlic, doesn't that burn your mouth? I've been trying the Oregano Oil so many on here recommend and that really burns my mouth. We eat a lot of COOKED garlic in the food I prepare, but I assume it needs to be raw. The little bit of raw I've had really burns, so what do you all do? Are the supplements good enough as a recourse?

Tara, I don't have suggestions but I know what you're going through!!!!
 
A

Aspiemom

Guest
Well, I'm late reading your thread, but when I did I felt like I was reading about myself! Except for the little ones - I'd be dragging, too, if I had twin 3 yr olds to keep up with! Makes me tired just thinking about it!

I have PA, too, resistant to everything oral. Haven't convinced my doc to try some different IV abx - she's stuck on Tobramycin & Meropenum. I just don't feel much better after the abx, so I'm thinking she needs to try something else, but I'm allergic to the Sulfa drugs & had some hives w/ the penicillin line so maybe that narrows it down too much. What line is Zyvox in?

I, too, feel crappy most of the time and I run a lot of 99.5 fevers (my usual is 97) and I have swollen glands a lot (which may be unrelated). I've been on night O2 for the past 3 wks and also during the day when I leave the house or do anything exerting.

About the garlic, doesn't that burn your mouth? I've been trying the Oregano Oil so many on here recommend and that really burns my mouth. We eat a lot of COOKED garlic in the food I prepare, but I assume it needs to be raw. The little bit of raw I've had really burns, so what do you all do? Are the supplements good enough as a recourse?

Tara, I don't have suggestions but I know what you're going through!!!!
 
A

Aspiemom

Guest
Well, I'm late reading your thread, but when I did I felt like I was reading about myself! Except for the little ones - I'd be dragging, too, if I had twin 3 yr olds to keep up with! Makes me tired just thinking about it!

I have PA, too, resistant to everything oral. Haven't convinced my doc to try some different IV abx - she's stuck on Tobramycin & Meropenum. I just don't feel much better after the abx, so I'm thinking she needs to try something else, but I'm allergic to the Sulfa drugs & had some hives w/ the penicillin line so maybe that narrows it down too much. What line is Zyvox in?

I, too, feel crappy most of the time and I run a lot of 99.5 fevers (my usual is 97) and I have swollen glands a lot (which may be unrelated). I've been on night O2 for the past 3 wks and also during the day when I leave the house or do anything exerting.

About the garlic, doesn't that burn your mouth? I've been trying the Oregano Oil so many on here recommend and that really burns my mouth. We eat a lot of COOKED garlic in the food I prepare, but I assume it needs to be raw. The little bit of raw I've had really burns, so what do you all do? Are the supplements good enough as a recourse?

Tara, I don't have suggestions but I know what you're going through!!!!
 
A

Aspiemom

Guest
Well, I'm late reading your thread, but when I did I felt like I was reading about myself! Except for the little ones - I'd be dragging, too, if I had twin 3 yr olds to keep up with! Makes me tired just thinking about it!

I have PA, too, resistant to everything oral. Haven't convinced my doc to try some different IV abx - she's stuck on Tobramycin & Meropenum. I just don't feel much better after the abx, so I'm thinking she needs to try something else, but I'm allergic to the Sulfa drugs & had some hives w/ the penicillin line so maybe that narrows it down too much. What line is Zyvox in?

I, too, feel crappy most of the time and I run a lot of 99.5 fevers (my usual is 97) and I have swollen glands a lot (which may be unrelated). I've been on night O2 for the past 3 wks and also during the day when I leave the house or do anything exerting.

About the garlic, doesn't that burn your mouth? I've been trying the Oregano Oil so many on here recommend and that really burns my mouth. We eat a lot of COOKED garlic in the food I prepare, but I assume it needs to be raw. The little bit of raw I've had really burns, so what do you all do? Are the supplements good enough as a recourse?

Tara, I don't have suggestions but I know what you're going through!!!!
 
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