I'm Out Of Ideas...

[tara]

I've had a rough two years. They haven't been horrible but I can't seem to get out from under "infection" stage. I go on IVs, I feel better, my cough is near nil, I go off IVs and less than two weeks later, my PA is "flaring up" again. I try and ride it out sometimes, other times I hit it with oral abx. When that doesn't work I go back on IVs again.

The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.

Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.

When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.

I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.

After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.

Ideas?

 

[tara]

I've had a rough two years. They haven't been horrible but I can't seem to get out from under "infection" stage. I go on IVs, I feel better, my cough is near nil, I go off IVs and less than two weeks later, my PA is "flaring up" again. I try and ride it out sometimes, other times I hit it with oral abx. When that doesn't work I go back on IVs again.

The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.

Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.

When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.

I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.

After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.

Ideas?

 

[tara]

I've had a rough two years. They haven't been horrible but I can't seem to get out from under "infection" stage. I go on IVs, I feel better, my cough is near nil, I go off IVs and less than two weeks later, my PA is "flaring up" again. I try and ride it out sometimes, other times I hit it with oral abx. When that doesn't work I go back on IVs again.

The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.

Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.

When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.

I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.

After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.

Ideas?

 

[tara]

I've had a rough two years. They haven't been horrible but I can't seem to get out from under "infection" stage. I go on IVs, I feel better, my cough is near nil, I go off IVs and less than two weeks later, my PA is "flaring up" again. I try and ride it out sometimes, other times I hit it with oral abx. When that doesn't work I go back on IVs again.

The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.

Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.

When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.

I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.

After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.

Ideas?

 

[tara]

I've had a rough two years. They haven't been horrible but I can't seem to get out from under "infection" stage. I go on IVs, I feel better, my cough is near nil, I go off IVs and less than two weeks later, my PA is "flaring up" again. I try and ride it out sometimes, other times I hit it with oral abx. When that doesn't work I go back on IVs again.

The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.

Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.

When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.

I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.

After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.

Ideas?

 

[JennifersHope]

Shoot Tara.. I totally understand where you are coming from but I have only been this way since July.. it is so annoying..

Have you tried the ZIthromax, Monday, Wed, Friday, I know it is for inflamation but I heard it works good for PA.... I just started taking it...

When you are doing your IVS are you doing two and three of them that cover PA, right now I am up to three IV antibiotics, one oral, and one inhaled... to try to cover different bugs fully.

My doctor told me sometimes it isn't good to single handed cover a bacteria and using two or three that you are sensitive to is a good thing..

From what I understand, isn't plus 1 the lowest amount found of PA? I am not sure... I am actually waiting for my results to come back.... with quant numbers..

I am wondering if you have something else going on in addition to the PA infections, has your thyroid been checked, are you blood sugars okay?

I don't know, I just hope they find something for you, and I hope you are able to find away to feel better and have a better quality of life...

You are such a sweet person and have been so supportive in my life...

Let us know.. and hopefully someone will have some kind of answer for you

Jennifer

 

[JennifersHope]

Shoot Tara.. I totally understand where you are coming from but I have only been this way since July.. it is so annoying..

Have you tried the ZIthromax, Monday, Wed, Friday, I know it is for inflamation but I heard it works good for PA.... I just started taking it...

When you are doing your IVS are you doing two and three of them that cover PA, right now I am up to three IV antibiotics, one oral, and one inhaled... to try to cover different bugs fully.

My doctor told me sometimes it isn't good to single handed cover a bacteria and using two or three that you are sensitive to is a good thing..

From what I understand, isn't plus 1 the lowest amount found of PA? I am not sure... I am actually waiting for my results to come back.... with quant numbers..

I am wondering if you have something else going on in addition to the PA infections, has your thyroid been checked, are you blood sugars okay?

I don't know, I just hope they find something for you, and I hope you are able to find away to feel better and have a better quality of life...

You are such a sweet person and have been so supportive in my life...

Let us know.. and hopefully someone will have some kind of answer for you

Jennifer

 

[JennifersHope]

Shoot Tara.. I totally understand where you are coming from but I have only been this way since July.. it is so annoying..

Have you tried the ZIthromax, Monday, Wed, Friday, I know it is for inflamation but I heard it works good for PA.... I just started taking it...

When you are doing your IVS are you doing two and three of them that cover PA, right now I am up to three IV antibiotics, one oral, and one inhaled... to try to cover different bugs fully.

My doctor told me sometimes it isn't good to single handed cover a bacteria and using two or three that you are sensitive to is a good thing..

From what I understand, isn't plus 1 the lowest amount found of PA? I am not sure... I am actually waiting for my results to come back.... with quant numbers..

I am wondering if you have something else going on in addition to the PA infections, has your thyroid been checked, are you blood sugars okay?

I don't know, I just hope they find something for you, and I hope you are able to find away to feel better and have a better quality of life...

You are such a sweet person and have been so supportive in my life...

Let us know.. and hopefully someone will have some kind of answer for you

Jennifer

 

[JennifersHope]

Shoot Tara.. I totally understand where you are coming from but I have only been this way since July.. it is so annoying..

Have you tried the ZIthromax, Monday, Wed, Friday, I know it is for inflamation but I heard it works good for PA.... I just started taking it...

When you are doing your IVS are you doing two and three of them that cover PA, right now I am up to three IV antibiotics, one oral, and one inhaled... to try to cover different bugs fully.

My doctor told me sometimes it isn't good to single handed cover a bacteria and using two or three that you are sensitive to is a good thing..

From what I understand, isn't plus 1 the lowest amount found of PA? I am not sure... I am actually waiting for my results to come back.... with quant numbers..

I am wondering if you have something else going on in addition to the PA infections, has your thyroid been checked, are you blood sugars okay?

I don't know, I just hope they find something for you, and I hope you are able to find away to feel better and have a better quality of life...

You are such a sweet person and have been so supportive in my life...

Let us know.. and hopefully someone will have some kind of answer for you

Jennifer

 

[JennifersHope]

Shoot Tara.. I totally understand where you are coming from but I have only been this way since July.. it is so annoying..

Have you tried the ZIthromax, Monday, Wed, Friday, I know it is for inflamation but I heard it works good for PA.... I just started taking it...

When you are doing your IVS are you doing two and three of them that cover PA, right now I am up to three IV antibiotics, one oral, and one inhaled... to try to cover different bugs fully.

My doctor told me sometimes it isn't good to single handed cover a bacteria and using two or three that you are sensitive to is a good thing..

From what I understand, isn't plus 1 the lowest amount found of PA? I am not sure... I am actually waiting for my results to come back.... with quant numbers..

I am wondering if you have something else going on in addition to the PA infections, has your thyroid been checked, are you blood sugars okay?

I don't know, I just hope they find something for you, and I hope you are able to find away to feel better and have a better quality of life...

You are such a sweet person and have been so supportive in my life...

Let us know.. and hopefully someone will have some kind of answer for you

Jennifer

 

[jfarel]

You sound a lot like me. I'm just starting Cipro in between IV's as well. I get those low grade fevers and that crappy feeling. Ibuprofen helps me with that crappy feeling. But don't go overboard with it, as too much isn't good for you. I just take it when I have too.

The other thing I would suggest is to try and build up your stamina by exercising and lifting weights. I would do cardio as often as possible (4 or more times per week) and lift weights 3 or 4 times a week. Your not trying to get buff, just build endurance and strenght. Nautilus machines work well for that.

EAting sweets probably is not a big deal unless you have crfd and that may make you worse. Overall you want to get enough calories, especially if you are exercising, but you still want to try eat relatively healthy foods. In other words, probably not a good idea to eat at McDonalds every day.

HAve you inhaled TOBI before? If you can tolerate it, it works really well. Also the new Aztreonam Lysine in the eflow should be available sometime in 2008. That also targets PA. If you culture PA your always going to be on some antibiotic, and if you can tolerate it, TOBI is the best choice. It worked great for me for 6 or 7 years.

 

[jfarel]

You sound a lot like me. I'm just starting Cipro in between IV's as well. I get those low grade fevers and that crappy feeling. Ibuprofen helps me with that crappy feeling. But don't go overboard with it, as too much isn't good for you. I just take it when I have too.

The other thing I would suggest is to try and build up your stamina by exercising and lifting weights. I would do cardio as often as possible (4 or more times per week) and lift weights 3 or 4 times a week. Your not trying to get buff, just build endurance and strenght. Nautilus machines work well for that.

EAting sweets probably is not a big deal unless you have crfd and that may make you worse. Overall you want to get enough calories, especially if you are exercising, but you still want to try eat relatively healthy foods. In other words, probably not a good idea to eat at McDonalds every day.

HAve you inhaled TOBI before? If you can tolerate it, it works really well. Also the new Aztreonam Lysine in the eflow should be available sometime in 2008. That also targets PA. If you culture PA your always going to be on some antibiotic, and if you can tolerate it, TOBI is the best choice. It worked great for me for 6 or 7 years.

 

[jfarel]

You sound a lot like me. I'm just starting Cipro in between IV's as well. I get those low grade fevers and that crappy feeling. Ibuprofen helps me with that crappy feeling. But don't go overboard with it, as too much isn't good for you. I just take it when I have too.

The other thing I would suggest is to try and build up your stamina by exercising and lifting weights. I would do cardio as often as possible (4 or more times per week) and lift weights 3 or 4 times a week. Your not trying to get buff, just build endurance and strenght. Nautilus machines work well for that.

EAting sweets probably is not a big deal unless you have crfd and that may make you worse. Overall you want to get enough calories, especially if you are exercising, but you still want to try eat relatively healthy foods. In other words, probably not a good idea to eat at McDonalds every day.

HAve you inhaled TOBI before? If you can tolerate it, it works really well. Also the new Aztreonam Lysine in the eflow should be available sometime in 2008. That also targets PA. If you culture PA your always going to be on some antibiotic, and if you can tolerate it, TOBI is the best choice. It worked great for me for 6 or 7 years.

 

[jfarel]

You sound a lot like me. I'm just starting Cipro in between IV's as well. I get those low grade fevers and that crappy feeling. Ibuprofen helps me with that crappy feeling. But don't go overboard with it, as too much isn't good for you. I just take it when I have too.

The other thing I would suggest is to try and build up your stamina by exercising and lifting weights. I would do cardio as often as possible (4 or more times per week) and lift weights 3 or 4 times a week. Your not trying to get buff, just build endurance and strenght. Nautilus machines work well for that.

EAting sweets probably is not a big deal unless you have crfd and that may make you worse. Overall you want to get enough calories, especially if you are exercising, but you still want to try eat relatively healthy foods. In other words, probably not a good idea to eat at McDonalds every day.

HAve you inhaled TOBI before? If you can tolerate it, it works really well. Also the new Aztreonam Lysine in the eflow should be available sometime in 2008. That also targets PA. If you culture PA your always going to be on some antibiotic, and if you can tolerate it, TOBI is the best choice. It worked great for me for 6 or 7 years.

 

[jfarel]

You sound a lot like me. I'm just starting Cipro in between IV's as well. I get those low grade fevers and that crappy feeling. Ibuprofen helps me with that crappy feeling. But don't go overboard with it, as too much isn't good for you. I just take it when I have too.

The other thing I would suggest is to try and build up your stamina by exercising and lifting weights. I would do cardio as often as possible (4 or more times per week) and lift weights 3 or 4 times a week. Your not trying to get buff, just build endurance and strenght. Nautilus machines work well for that.

EAting sweets probably is not a big deal unless you have crfd and that may make you worse. Overall you want to get enough calories, especially if you are exercising, but you still want to try eat relatively healthy foods. In other words, probably not a good idea to eat at McDonalds every day.

HAve you inhaled TOBI before? If you can tolerate it, it works really well. Also the new Aztreonam Lysine in the eflow should be available sometime in 2008. That also targets PA. If you culture PA your always going to be on some antibiotic, and if you can tolerate it, TOBI is the best choice. It worked great for me for 6 or 7 years.

 

[tara]

Thanks for the replies guys!

Yes, I've been on Zithro for 5 years with not much success. I don't see a difference when I'm on it, or when I go off it. Right now I'm on it.

My IVs are always a triple cocktail, plus oral abx, usually bactrim form some reason. TOBI hasn't done well for me in several years. It feels like it "stopped" working these last three years or so. I've tried inhaling Gentamicin, Tobramycin (not TOBI), Aztreonam and TOBI of course. I've even tried Fortaz. Fortaz and Aztreonam (both IV versions of the drug I reconstitute into the neb) seem to work best, but they work after about 7 days, I have a good 7 days, and then the effect seems to go away, and I feel cruddy again. Even though I'm still in the middle of my 28 day course.

The only thing I have not tried is exercise. I move around a bit. I lift the twins (they are 3) and look after them every day, all day. So I'm totally a lump, but mostly. ;-) So I will try the exercise for sure.

Ibuprofin does WONDERS for me. It masks nearly all my symptoms and certainly takes the fever away. I usually take it twice a day for weeks on end when I feel like this. I figure, if motrin is good enough to make me feel better, I'm probably not that bad off to start. Glad to hear I'm not the only one that gets that darn fever! That's actually the first sign things are going awry for me. My sugars are good, if I don't go overboard on the sweets. My 2 hour post meal numbers are always under 140. I still think I need to add more veggies to my diet. But other than that, I certainly don't over do it on the junk food/fast food.

Thanks so far for the replies. I appreciate it.

 

[tara]

Thanks for the replies guys!

Yes, I've been on Zithro for 5 years with not much success. I don't see a difference when I'm on it, or when I go off it. Right now I'm on it.

My IVs are always a triple cocktail, plus oral abx, usually bactrim form some reason. TOBI hasn't done well for me in several years. It feels like it "stopped" working these last three years or so. I've tried inhaling Gentamicin, Tobramycin (not TOBI), Aztreonam and TOBI of course. I've even tried Fortaz. Fortaz and Aztreonam (both IV versions of the drug I reconstitute into the neb) seem to work best, but they work after about 7 days, I have a good 7 days, and then the effect seems to go away, and I feel cruddy again. Even though I'm still in the middle of my 28 day course.

The only thing I have not tried is exercise. I move around a bit. I lift the twins (they are 3) and look after them every day, all day. So I'm totally a lump, but mostly. ;-) So I will try the exercise for sure.

Ibuprofin does WONDERS for me. It masks nearly all my symptoms and certainly takes the fever away. I usually take it twice a day for weeks on end when I feel like this. I figure, if motrin is good enough to make me feel better, I'm probably not that bad off to start. Glad to hear I'm not the only one that gets that darn fever! That's actually the first sign things are going awry for me. My sugars are good, if I don't go overboard on the sweets. My 2 hour post meal numbers are always under 140. I still think I need to add more veggies to my diet. But other than that, I certainly don't over do it on the junk food/fast food.

Thanks so far for the replies. I appreciate it.

 

[tara]

Thanks for the replies guys!

Yes, I've been on Zithro for 5 years with not much success. I don't see a difference when I'm on it, or when I go off it. Right now I'm on it.

My IVs are always a triple cocktail, plus oral abx, usually bactrim form some reason. TOBI hasn't done well for me in several years. It feels like it "stopped" working these last three years or so. I've tried inhaling Gentamicin, Tobramycin (not TOBI), Aztreonam and TOBI of course. I've even tried Fortaz. Fortaz and Aztreonam (both IV versions of the drug I reconstitute into the neb) seem to work best, but they work after about 7 days, I have a good 7 days, and then the effect seems to go away, and I feel cruddy again. Even though I'm still in the middle of my 28 day course.

The only thing I have not tried is exercise. I move around a bit. I lift the twins (they are 3) and look after them every day, all day. So I'm totally a lump, but mostly. ;-) So I will try the exercise for sure.

Ibuprofin does WONDERS for me. It masks nearly all my symptoms and certainly takes the fever away. I usually take it twice a day for weeks on end when I feel like this. I figure, if motrin is good enough to make me feel better, I'm probably not that bad off to start. Glad to hear I'm not the only one that gets that darn fever! That's actually the first sign things are going awry for me. My sugars are good, if I don't go overboard on the sweets. My 2 hour post meal numbers are always under 140. I still think I need to add more veggies to my diet. But other than that, I certainly don't over do it on the junk food/fast food.

Thanks so far for the replies. I appreciate it.

 

[tara]

Thanks for the replies guys!

Yes, I've been on Zithro for 5 years with not much success. I don't see a difference when I'm on it, or when I go off it. Right now I'm on it.

My IVs are always a triple cocktail, plus oral abx, usually bactrim form some reason. TOBI hasn't done well for me in several years. It feels like it "stopped" working these last three years or so. I've tried inhaling Gentamicin, Tobramycin (not TOBI), Aztreonam and TOBI of course. I've even tried Fortaz. Fortaz and Aztreonam (both IV versions of the drug I reconstitute into the neb) seem to work best, but they work after about 7 days, I have a good 7 days, and then the effect seems to go away, and I feel cruddy again. Even though I'm still in the middle of my 28 day course.

The only thing I have not tried is exercise. I move around a bit. I lift the twins (they are 3) and look after them every day, all day. So I'm totally a lump, but mostly. ;-) So I will try the exercise for sure.

Ibuprofin does WONDERS for me. It masks nearly all my symptoms and certainly takes the fever away. I usually take it twice a day for weeks on end when I feel like this. I figure, if motrin is good enough to make me feel better, I'm probably not that bad off to start. Glad to hear I'm not the only one that gets that darn fever! That's actually the first sign things are going awry for me. My sugars are good, if I don't go overboard on the sweets. My 2 hour post meal numbers are always under 140. I still think I need to add more veggies to my diet. But other than that, I certainly don't over do it on the junk food/fast food.

Thanks so far for the replies. I appreciate it.

 

[tara]

Thanks for the replies guys!

Yes, I've been on Zithro for 5 years with not much success. I don't see a difference when I'm on it, or when I go off it. Right now I'm on it.

My IVs are always a triple cocktail, plus oral abx, usually bactrim form some reason. TOBI hasn't done well for me in several years. It feels like it "stopped" working these last three years or so. I've tried inhaling Gentamicin, Tobramycin (not TOBI), Aztreonam and TOBI of course. I've even tried Fortaz. Fortaz and Aztreonam (both IV versions of the drug I reconstitute into the neb) seem to work best, but they work after about 7 days, I have a good 7 days, and then the effect seems to go away, and I feel cruddy again. Even though I'm still in the middle of my 28 day course.

The only thing I have not tried is exercise. I move around a bit. I lift the twins (they are 3) and look after them every day, all day. So I'm totally a lump, but mostly. ;-) So I will try the exercise for sure.

Ibuprofin does WONDERS for me. It masks nearly all my symptoms and certainly takes the fever away. I usually take it twice a day for weeks on end when I feel like this. I figure, if motrin is good enough to make me feel better, I'm probably not that bad off to start. Glad to hear I'm not the only one that gets that darn fever! That's actually the first sign things are going awry for me. My sugars are good, if I don't go overboard on the sweets. My 2 hour post meal numbers are always under 140. I still think I need to add more veggies to my diet. But other than that, I certainly don't over do it on the junk food/fast food.

Thanks so far for the replies. I appreciate it.