Joint pain

[Guest guest]

My daughter who is 15 1/2 has complained of joint pain for years. She

actually has episodes where her joint in her ankle has gotten swollen, hot

and red. She has even ended up in the hospital over it. A few times it spread

up her leg. We have gone to Rheumatoid specialist and all tests make the

doctors blame it on her CF.

I am not happy to hear that other CF'ers have this too, but, it is comforting

knowing that it's not just her.

She complains about her wrists, ankles, and neck mainly. She takes Bextra and

it seems to help.

Hope this helps and best of luck.

Lorenzen, mom of King wcf

[Guest guest]

In a message dated 2/4/2003 9:51:16 PM Central Standard Time,

kimpayne@... writes:

>

>

> Deb,

>

> Must be a copy of an old article. Val had another son last spring and

> he also has CF. I think she has 6 or 7 kids total. (only one daughter

> out of the lot so she was really hoping this last would be another

> boy). Her youngest three children have CF and are doing well.

>

> You can join wlgroup2 if you want to search the

> archives for the glutathione (GSH) work. It's a pretty quiet group;

> rarely does anyone post anymore since the paper got published.

>

> Kim

> Mom of (23 1/2 with cf and asthma) and (asthma no cf).

>

Kim,

Why is that? Is know one posting anymore? Does it work or not? Is it kind of

the same thing as Manna?

[Guest guest]

In a message dated 2/4/2003 9:54:01 PM Central Standard Time,

lisacl87@... writes:

> My daughter who is 15 1/2 has complained of joint pain for years. She

> actually has episodes where her joint in her ankle has gotten swollen, hot

> and red. She has even ended up in the hospital over it. A few times it

> spread

> up her leg. We have gone to Rheumatoid specialist and all tests make the

> doctors blame it on her CF.

> I am not happy to hear that other CF'ers have this too, but, it is

> comforting

> knowing that it's not just her.

> She complains about her wrists, ankles, and neck mainly. She takes Bextra

> and

> it seems to help.

> Hope this helps and best of luck.

> Lorenzen, mom of King wcf

Do you think it is all of the medication? I know once I said something to our

Ped. doctor about how I had lots of cipro at home and when our daughter that

does not have CF had a terrible cough I almost just gave that to her. She

said to me that Oh know we don't recommend give cipro to young kids because

it can cause problems with there bones and I said well my two kids with CF

are and she said well giving the alternative you are better off giving it to

them. Because if we don't there lungs will get more damaged. Anyone else

heard of this? Deb A

[Guest guest]

Deb,

Must be a copy of an old article. Val had another son last spring and

he also has CF. I think she has 6 or 7 kids total. (only one daughter

out of the lot so she was really hoping this last would be another

boy). Her youngest three children have CF and are doing well.

You can join wlgroup2 if you want to search the

archives for the glutathione (GSH) work. It's a pretty quiet group;

rarely does anyone post anymore since the paper got published.

Kim

Mom of (23 1/2 with cf and asthma) and (asthma no cf).

> Has anyone else's kid complain of joint pain? My oldest has been

really

> complaining of her ankle and wrist hurting and I was just wondering

if it was

> CF related. Also has any one read Women's Day magazine? My mom just

called me

> and said there is an article about a women who has 2 boys with CF

that uses

> glutathione and says it has done wonders for her kids. The ladies

name is

> Hudson from Utah. Anyone else see this article? Deb A

[Guest guest]

In a message dated 2/5/2003 9:03:42 AM Central Standard Time,

kimpayne@... writes:

> Deb,

>

> People aren't posting much anymore since the GSH paper Val wrote got

> published. Next step was a trial study; I don't know where that

> process is. The original purpose of the group was to research/discuss

> GSH inhalations. Several members were experimenting with inhaling GSH

> and saw the benefits.

>

> I only know of a couple people that were taking GSH orally (capsules).

> One was my son. While taking oral GSH, he eventually stopped needing

> enzymes. I know of a 16-yr. old boy who also takes GSH orally and has

> reduced enzyme dose. But again, most people in the group were inhaling

> it, and ironically, also saw a need to reduce enzyme dose.

>

> Anwyay, the group isn't quiet because GSH inhalations don't work, the

> group is quiet because the goal was completed: research and get the

> info into someone to trial it.

>

> There isn't any cookie-cutter approach to treating CF. Some may end up

> inhaling this or that or taking this pill or that pill. Someday, GSH

> inhalations may be part of a standard approach for treating some

> people with CF. It's already been studied in other lung conditions.

>

> Kim

>

Well Thanks Kim!! I had not heard of GSH before. Thanks for you infomation.

Deb A

[Guest guest]

Deb,

People aren't posting much anymore since the GSH paper Val wrote got

published. Next step was a trial study; I don't know where that

process is. The original purpose of the group was to research/discuss

GSH inhalations. Several members were experimenting with inhaling GSH

and saw the benefits.

I only know of a couple people that were taking GSH orally (capsules).

One was my son. While taking oral GSH, he eventually stopped needing

enzymes. I know of a 16-yr. old boy who also takes GSH orally and has

reduced enzyme dose. But again, most people in the group were inhaling

it, and ironically, also saw a need to reduce enzyme dose.

Anwyay, the group isn't quiet because GSH inhalations don't work, the

group is quiet because the goal was completed: research and get the

info into someone to trial it.

There isn't any cookie-cutter approach to treating CF. Some may end up

inhaling this or that or taking this pill or that pill. Someday, GSH

inhalations may be part of a standard approach for treating some

people with CF. It's already been studied in other lung conditions.

Kim

> In a message dated 2/4/2003 9:51:16 PM Central Standard Time,

> kimpayne@c... writes:

>

>

> >

> >

> > Deb,

> >

> > Must be a copy of an old article. Val had another son last spring

and

> > he also has CF. I think she has 6 or 7 kids total. (only one

daughter

> > out of the lot so she was really hoping this last would be another

> > boy). Her youngest three children have CF and are doing well.

> >

> > You can join wlgroup2 if you want to search the

> > archives for the glutathione (GSH) work. It's a pretty quiet

group;

> > rarely does anyone post anymore since the paper got published.

> >

> > Kim

> > Mom of (23 1/2 with cf and asthma) and (asthma no

cf).

> >

>

> Kim,

> Why is that? Is know one posting anymore? Does it work or not? Is it

kind of

> the same thing as Manna?

>

>

>

[Guest guest]

I wake up in the morning feeling like the tin man. My joints and

mucsles are so sore I have to wait for them to start working. I heard

a lot about MSM powder and orderd some. I got it today, but how much

to take? These are MSM capsules 1000 mg. It says 2 to 4 twice daily.

What works or does it vary for everyone? Thanks so much.

[Guest guest]

MSM Powder

You can take a tsp with a 1/4 cup of water multiple times a day. You can't take too much, it is one of those when we get enough, the rest we pee out.

After I got used to the tsp dose, I worked up to a tbsp in 1/4 cup, and that holds me over for the better part of a day.

Hope it helps,

Tracie

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