If someone could please help...

D

Diane

New member
I dont know how helpful this will be but when i was feeling tired and crappy all the time , i started using Glutathione orally after reading about it for weeks. It has helped me tremendously. I have the energy i used to have which allows me to be more active which helps in many ways. Glutathione is an amino acid that we with cf are depleted in ( i hope i am using the right analogy and words ) Some people inhale it but i chose to only use it orally since i have hemoptysis problems and b.cepacia. It is recommended not to inhale it if you have cery low pft's. Here's some info..............................
<a target=new class=ftalternatingbarlinklarge href="http://aolsearch.aol.com/aol/search?invocationType=bottomsearchbox.%2Faol%2Fjsp%2Fsearch.jsp&query=glutathione+and+cystic+fibrosis&x=30&y=7
">http://aolsearch.aol.com/aol/search?invocationType=bottomsearchbox.%2Faol%2Fjsp%2Fsearch.jsp&query=glutathione+and+cystic+fibrosis&x=30&y=7
</a> I hope no matter which type of thing he chooses to help works well and he gets back to feeling better. Depression goes with the territory of what he is going thru, I know anytime i am sick i get extremely depressed, and want to withdraw from people . I have been on Zoloft due to anxiety for 3 years now and as long as i have cf i think i'll have to stay on it.
 
D

Diane

New member
I dont know how helpful this will be but when i was feeling tired and crappy all the time , i started using Glutathione orally after reading about it for weeks. It has helped me tremendously. I have the energy i used to have which allows me to be more active which helps in many ways. Glutathione is an amino acid that we with cf are depleted in ( i hope i am using the right analogy and words ) Some people inhale it but i chose to only use it orally since i have hemoptysis problems and b.cepacia. It is recommended not to inhale it if you have cery low pft's. Here's some info..............................
<a target=new class=ftalternatingbarlinklarge href="http://aolsearch.aol.com/aol/search?invocationType=bottomsearchbox.%2Faol%2Fjsp%2Fsearch.jsp&query=glutathione+and+cystic+fibrosis&x=30&y=7
">http://aolsearch.aol.com/aol/search?invocationType=bottomsearchbox.%2Faol%2Fjsp%2Fsearch.jsp&query=glutathione+and+cystic+fibrosis&x=30&y=7
</a> I hope no matter which type of thing he chooses to help works well and he gets back to feeling better. Depression goes with the territory of what he is going thru, I know anytime i am sick i get extremely depressed, and want to withdraw from people . I have been on Zoloft due to anxiety for 3 years now and as long as i have cf i think i'll have to stay on it.
 
A

anonymous

New member
It's just a little suggestion/guess, but have them check his testosterone level. My husband's dropped through the floor when he was frequently on IV steriods. (The doc lost all composure and said "you have NO testosterone".) Once he was on a testosterone patch (which was cheap and covered by insurance) he got his energy back and was less depressed.

Also my husband said that when he was on vancomycin he felt like he was being poisoned (like chemo). It always took him a week or two off to even begin to feel better.

And my husband missed his guy friends. Any chance you could turn up some old guy friends to come over and just hang out and watch a game or two? Sisters and wives are nice, but we're just not "guys".

You sound like a real nice woman and a very caring sister. Please take care of you too. (Maybe while the guys are watching the game you can get a manicure or a massage.) You can't take care of him if you're beat to a pulp.
 
A

anonymous

New member
It's just a little suggestion/guess, but have them check his testosterone level. My husband's dropped through the floor when he was frequently on IV steriods. (The doc lost all composure and said "you have NO testosterone".) Once he was on a testosterone patch (which was cheap and covered by insurance) he got his energy back and was less depressed.

Also my husband said that when he was on vancomycin he felt like he was being poisoned (like chemo). It always took him a week or two off to even begin to feel better.

And my husband missed his guy friends. Any chance you could turn up some old guy friends to come over and just hang out and watch a game or two? Sisters and wives are nice, but we're just not "guys".

You sound like a real nice woman and a very caring sister. Please take care of you too. (Maybe while the guys are watching the game you can get a manicure or a massage.) You can't take care of him if you're beat to a pulp.
 
A

anonymous

New member
Lisa,

My son just got off vanco- 3 weeks. And he feels awful!! He has lost weight and just can't make himself eat (which is a problem for him to begin with). You likened it to chemo- thats just how I guess my son feels. Did your husband have a similar experience?

Jane (forgot to log on)
 
A

anonymous

New member
Lisa,

My son just got off vanco- 3 weeks. And he feels awful!! He has lost weight and just can't make himself eat (which is a problem for him to begin with). You likened it to chemo- thats just how I guess my son feels. Did your husband have a similar experience?

Jane (forgot to log on)
 
A

anonymous

New member
Yup, that's how he felt. Really needed a combination of R and R and physical rehab after every round.
I wish I had some good suggestions for a kid. Resuming activities is important, but so are naps.
Sometimes my husband would eat one or 2 things (like strawberry milkshakes and fluffernutter sandwiches) and we went for it (balanced or not), but he said vanco made everything taste like s**t.
It passed with time, if that helps at all.
-lisaV
 
A

anonymous

New member
Yup, that's how he felt. Really needed a combination of R and R and physical rehab after every round.
I wish I had some good suggestions for a kid. Resuming activities is important, but so are naps.
Sometimes my husband would eat one or 2 things (like strawberry milkshakes and fluffernutter sandwiches) and we went for it (balanced or not), but he said vanco made everything taste like s**t.
It passed with time, if that helps at all.
-lisaV
 
K

Kimmiek

New member
Wow, I didn't know blood sugars could have that effect! Very interesting, strange, I have not been able to find much detailed information on CFRD. I have looked quite a bit for nutrition information and have not come up with much. His dr. just says check your insulin, and he is not on any special diet. I thought that was a little strange. Any dietary suggestions? One of the problems is, he is on prednazone right now, and it makes him crave sweets....I've already brought up 2 boxes of "cocoa krispies" (of all things)..Any websites on that or suggestions would be great (CFRD)

The Vanco is really rough on him too, he throws up really bad. It's horrible. They started giving him fenigen (sp) prior to giving him his dose, which makes him totally out of it..

I just feel like it's a vicious cycle. Medicine to counter-act the medicine for the medicine...Seems crazy. Which is why I am SO very happy to find this forum. I feel like there is some hope!
Interesting about the oregano oil. Anyone else care to share about that? I printed up some clinical studies I found on both oregano oil and GSH for him to share with his CF dr. today. I will let all of you know what he says.
 
K

Kimmiek

New member
Wow, I didn't know blood sugars could have that effect! Very interesting, strange, I have not been able to find much detailed information on CFRD. I have looked quite a bit for nutrition information and have not come up with much. His dr. just says check your insulin, and he is not on any special diet. I thought that was a little strange. Any dietary suggestions? One of the problems is, he is on prednazone right now, and it makes him crave sweets....I've already brought up 2 boxes of "cocoa krispies" (of all things)..Any websites on that or suggestions would be great (CFRD)

The Vanco is really rough on him too, he throws up really bad. It's horrible. They started giving him fenigen (sp) prior to giving him his dose, which makes him totally out of it..

I just feel like it's a vicious cycle. Medicine to counter-act the medicine for the medicine...Seems crazy. Which is why I am SO very happy to find this forum. I feel like there is some hope!
Interesting about the oregano oil. Anyone else care to share about that? I printed up some clinical studies I found on both oregano oil and GSH for him to share with his CF dr. today. I will let all of you know what he says.
 
K

Kimmiek

New member
I know he takes testosterone shots at home, I wonder if they give it to him at the hospital too...Very good point..I will ask.
 
K

Kimmiek

New member
I know he takes testosterone shots at home, I wonder if they give it to him at the hospital too...Very good point..I will ask.
 
C

coltsfan715

New member
Hey there,
I was the annon that posted earlier about the Blood sugars and all. When I was told that I had about the same reaction .. WHAT?!? why has no one told me this. Since then I have been trying to stay on top of my BSs. I personally am not on a restrictive diet because I need to gain weight. My docs have basically told me to just make sure I give enough insulin to cover the food I am eating and keep my blood sugar under control. Also you gave me a little bit of a laugh about the Cocoa Krispies cause when I am in the hospital I have my mom/dad bring a box of those up to the room so I have something to snack on.

I know for me, when I am in the hospital the combination of being sick, not doing anything - and steroids if they have me on them (though it is rare) - shoot my BSs through the roof. I end up having to give myself about 3-4 times more insulin than I normally do when I am not sick. If you ask your doc to refer an endocrinologist in to see your bro while he is in the hospital (if one isn't already seeing him) or a dietician they could probably help with his diet. Just make sure they understand that CFRD is different than regular Diabetes (dieticians always want to put me on a diet when I am in the hospital, and I am 5'7" and weigh about 110lbs. They automatically think Diabetes=Diet I think. If you see them though ask if they can get you a book with carbohydrate and sugar counts for different foods. I got one from my doc that has Carb/sugar counts for reg food (corn, potatoes, pasta .. ) and fast food(McDs, Wendys, KrispyKreme, Dunkin Doughnuts) as well as some specific foods(FruitLoops, Frosted Flakes and so on). That could maybe help in giving you an idea of the amount of sugars/carbs he is taking in and how to compensate with insulin.

I do hope that he starts feeling better. I know I go on Vanco for MRSA every other time I am int he hospital on IVs(they alternate it with Zyvox). I don't normally feel sick or anything I just get the Red Man's Syndrome where you itch/burn and your skin can turn red. I end up being asleep half the time I am IV meds when I take it cause they have to give me benadryl so I can tolerate the infusion.

With the prednisone and other meds, him being sick and laid up in bed I am sure his BS is probably contrbuting somewhat to his feeling icky. I know I feel inflammed anymore when my blood sugars gets high and I start to cough more. It normally eases as my blood sugar lowers - regardless of whether or not it is his BSs in combination with everything I do hope he starts feeling better and soon.

PS. -- you may want to double check also that they are not mixing his IV meds in Dextrose (sugar water) they should be mixing his meds in Saline(salt water) - this happens frequently to me when I go in the hospital that is the only reason I am bringing it up. That can also contribute to hi BSs and just overall feeling sick and nauseous.

Take Care and Hope things get better.
Lindsey
 
C

coltsfan715

New member
Hey there,
I was the annon that posted earlier about the Blood sugars and all. When I was told that I had about the same reaction .. WHAT?!? why has no one told me this. Since then I have been trying to stay on top of my BSs. I personally am not on a restrictive diet because I need to gain weight. My docs have basically told me to just make sure I give enough insulin to cover the food I am eating and keep my blood sugar under control. Also you gave me a little bit of a laugh about the Cocoa Krispies cause when I am in the hospital I have my mom/dad bring a box of those up to the room so I have something to snack on.

I know for me, when I am in the hospital the combination of being sick, not doing anything - and steroids if they have me on them (though it is rare) - shoot my BSs through the roof. I end up having to give myself about 3-4 times more insulin than I normally do when I am not sick. If you ask your doc to refer an endocrinologist in to see your bro while he is in the hospital (if one isn't already seeing him) or a dietician they could probably help with his diet. Just make sure they understand that CFRD is different than regular Diabetes (dieticians always want to put me on a diet when I am in the hospital, and I am 5'7" and weigh about 110lbs. They automatically think Diabetes=Diet I think. If you see them though ask if they can get you a book with carbohydrate and sugar counts for different foods. I got one from my doc that has Carb/sugar counts for reg food (corn, potatoes, pasta .. ) and fast food(McDs, Wendys, KrispyKreme, Dunkin Doughnuts) as well as some specific foods(FruitLoops, Frosted Flakes and so on). That could maybe help in giving you an idea of the amount of sugars/carbs he is taking in and how to compensate with insulin.

I do hope that he starts feeling better. I know I go on Vanco for MRSA every other time I am int he hospital on IVs(they alternate it with Zyvox). I don't normally feel sick or anything I just get the Red Man's Syndrome where you itch/burn and your skin can turn red. I end up being asleep half the time I am IV meds when I take it cause they have to give me benadryl so I can tolerate the infusion.

With the prednisone and other meds, him being sick and laid up in bed I am sure his BS is probably contrbuting somewhat to his feeling icky. I know I feel inflammed anymore when my blood sugars gets high and I start to cough more. It normally eases as my blood sugar lowers - regardless of whether or not it is his BSs in combination with everything I do hope he starts feeling better and soon.

PS. -- you may want to double check also that they are not mixing his IV meds in Dextrose (sugar water) they should be mixing his meds in Saline(salt water) - this happens frequently to me when I go in the hospital that is the only reason I am bringing it up. That can also contribute to hi BSs and just overall feeling sick and nauseous.

Take Care and Hope things get better.
Lindsey
 
K

Kimmiek

New member
WOW coltsfan. This is like dejavu! He had "Red Man's" the first time they put him on Vanco too. EXCEPT no one knew what the hell was going on. Then he developed something called "cellulitis" which is a red, painful inflamation of the extremities. OH how I wish I had this site then.

He too has MRSA. I was reading something on line about some derivative of garlic which can help keep MRSA at bay. I am still looking into it more. I will let you know what I find out.

I just left the hospital a little bit ago and he has gone from 209 to 231 since he went in. He said he is so tired of feeling like the pillsbury dough boy.

I will ask him about the Dextrose as well.

You guys are AWESOME!! You have no idea how much this helps! I have learned more in 1 day of talking with all of you than the doctors have told me in the last few months.

When he had "red man", there was, no kidding about 15 doctors looking at him and no one could figure it out. They gave him 5 or 6 different creams to try. Nothing, obviously helped.

Is your MRSA in your lungs or has it ever entered your blood stream? They thought it did with my brother once, but they found out the blood sample was contaminated, not his blood. Yeah, this hospital is not the greatest, however, that is the only hospital his CF doctors go to (while there and children's hospital). The other hospitals in the area he has been to do not know how to treat CF. There is only 1 CF clinic I know if in this city. I live in Scottsdale Arizona.
 
K

Kimmiek

New member
WOW coltsfan. This is like dejavu! He had "Red Man's" the first time they put him on Vanco too. EXCEPT no one knew what the hell was going on. Then he developed something called "cellulitis" which is a red, painful inflamation of the extremities. OH how I wish I had this site then.

He too has MRSA. I was reading something on line about some derivative of garlic which can help keep MRSA at bay. I am still looking into it more. I will let you know what I find out.

I just left the hospital a little bit ago and he has gone from 209 to 231 since he went in. He said he is so tired of feeling like the pillsbury dough boy.

I will ask him about the Dextrose as well.

You guys are AWESOME!! You have no idea how much this helps! I have learned more in 1 day of talking with all of you than the doctors have told me in the last few months.

When he had "red man", there was, no kidding about 15 doctors looking at him and no one could figure it out. They gave him 5 or 6 different creams to try. Nothing, obviously helped.

Is your MRSA in your lungs or has it ever entered your blood stream? They thought it did with my brother once, but they found out the blood sample was contaminated, not his blood. Yeah, this hospital is not the greatest, however, that is the only hospital his CF doctors go to (while there and children's hospital). The other hospitals in the area he has been to do not know how to treat CF. There is only 1 CF clinic I know if in this city. I live in Scottsdale Arizona.
 
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