New

[Guest guest]

hi tina. everyone is welcome here. i joined this group because my six year old son has cystic fibrosis and asthma. i am sorry you are experiencing all of this worry. i hope you find the support and comfort you are looking for. i wish the best for your friends and for you. feel free to email me anytime. keep us posted. evelynkristina_soergel <rabbits@...> wrote: Hi there,I joined this group because I really need to talk to someone who may understand. I hope that friends and family of hurting loved ones are welcome here. Don't mean to hurt anyone.I have two friends I'm worrying about. One is a tetraplegic (c3 incomp., 67 yrs. old (BTW, I'm 31)), the other one I'm currently more worried about has SMA (Spinal Muscular Atrophy). The latter is my

dear, dear friend from Canada and I haven't heard from her in quite a while. She's been in hospital almost all of last year (due to pancreitis not associated with her SMA) and now I'm really getting scared. We have a common friend who also hasn't reacted to my e-mails yet...My friend and I have been friends for almost 16 years now. I love her and miss her and it's getting harder and harder to stay in touch. We're so far apart and I can't just jump over there (I'm in Germany) and I would love to be there for her so much! This hurts. Is there anybody here who knows what I'm talking about?My other friend is here, but now I'm moving all across the country and so it will also be hard to stay in touch with her. However, we can talk on the phone which is good!I'd love to hear from anyone who knows what I feel like at the moment.All the best for all of you!Tina~~~~ *** ~~~ ***

~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please

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[Guest guest]

hi laura, and welcome to the group. A lot of us here have used Weight watchers,

myself included. The problem with weight watchers is that there is too much

flexibility to not eat clean. You can eat all junk food you want, so long as you

dont surpass your point range. You could also eat all your points in one

sitting, rather then spreading meals out throught the day to keep your

metabolism working. BFL nutrition is totally different. Its designed to help

your body rev up its metabolism and become a fat-burning machine! The nutrition

elements of the program really support the exercise portions. Success with BFL

really is largely nutrition--about 80% actually. Id really consider using the

BFL approach to eating.

Also, the BFL book and the BFL for women book are 2 different spins on the same

program. People have found success with both, personally I prefer the original

program. BFL for women isnt as " hard core " and allows for " cheats " each day.

Some peope even start with BFL for women and then move into the original BFL

version. It depends on what is right for you! Good luck!

[Guest guest]

>>> WW eating and

Body for Life Exercise program? >>>>>

when i first came on BFL about two weeks ago, i was on the WW core

program. i was going to try adapting BFL to the Core because I was

already doing it, (just NOT loosing) but it just proved to be too

cumbersome. If you are doing Flex, it seems even harder to me.

I decided not to do that, but I would say it's possible. You just

need to eat 5-6 meals a day with the correct protein to carb ratios,

etc. If you want to fuss with WW too, go for it. But it was too

complicated for me.

um, ah, er, if you are coming here from WW there is something about

WW that's not working for you. Can you say what that is?

Felicity

[Guest guest]

Welcome! There is lots of great advice here, so feel free to ask the

girls.

>

> Hi, I am really interested in changing my body. I am thinking Body

> for Life could be the answer. Is there a difference between The Body

> for Life for Women and the original book? Can this program be done

> easily at home or do I need to belong to a gym. I also follow Weight

> Watchers. Has anyone had good results following the WW eating and

> Body for Life Exercise program? Any information or encouragement

> would be appreciated. Thank you,

>

[Guest guest]

Hi and other newbies from WW,

I did weight watchers and did great. I didn't eat too much junk once

I got the hang of it. Although there were times I saved my

points to pig out. I also did the flex plan.

My problem? Once I got down to the 18 points a day...I was

starving!!! I exercised ALL the time. I was one fat, mushy exercise

bunny! GAG! Being mushy is no fun. Starving 90% of the time was no

fun. At 1200, 1400 and even 1800 calories I do not lose weight. I

have to eat more in the 2000 calorie range. I do have days where I

am around 1600 and others where I am up to 2500....that's a lot of

clean food by the way!

I don't count calories...I occasionally do to get an idea of where I

am so I can tell what is working. If that makes sense. I use the

basic BFL measurements of the hand, fist for carbs and protein.

KISS...Keep It Simple Sister. I think that works best for me.

Now I do WAYYY less cardio and WAY more weight lifting. I was very

intimidated by lifting especially in the gym with the big dogs! I

got a trainer for the basics and just recently fired him. I now lift

heavier weights than ever and work to failure. It is very effective

for me so far. I am way more tired than I have ever been in a good

way.

So far I have done EFL - the food part and exercised with lots of

cario and lost 25 pounds in about 8 months. In two months of less

cardio, more food and a new weight routine for the last month...down

almost ten more pounds in a lot less time. Interesting. Eat more,

exercise less - well, exercise less but smarter! ;)Lift more.

Hope my story helps a bit.

Welcome and good luck,

Kari

>

>

> hi laura, and welcome to the group. A lot of us here have used

Weight watchers, myself included. The problem with weight watchers is

that there is too much flexibility to not eat clean. You can eat all

junk food you want, so long as you dont surpass your point range. You

could also eat all your points in one sitting, rather then spreading

meals out throught the day to keep your metabolism working. BFL

nutrition is totally different. Its designed to help your body rev up

its metabolism and become a fat-burning machine! The nutrition

elements of the program really support the exercise portions. Success

with BFL really is largely nutrition--about 80% actually. Id really

consider using the BFL approach to eating.

>

> Also, the BFL book and the BFL for women book are 2 different spins

on the same program. People have found success with both, personally

I prefer the original program. BFL for women isnt as " hard core " and

allows for " cheats " each day. Some peope even start with BFL for

women and then move into the original BFL version. It depends on what

is right for you! Good luck!

>

>

>

>

>

[Guest guest]

Some answers....

> Is there a difference between The Body

> for Life for Women and the original book?

YES, I havent read the Women BFL, but based on what I've heard, you

are better off going with the original BFL if you want more dramatic

results.

>Can this program be done

> easily at home or do I need to belong to a gym.

You can do this at home as long as you have some way to do high

intensity cardio (cardio equipment or you could run/jog or use a

skipping rope). You will also need some dumbells to really make this

program work for you. A swiss ball would be helpful too.

> I also follow Weight

> Watchers. Has anyone had good results following the WW eating and

> Body for Life Exercise program? Any information or encouragement

> would be appreciated.

I dont have experience with WW. It is my understanding that it is

really focused on calorie counting using a point system. BFL is less

about calorie counting, and more about meal timing/meal size/the ratio

of protiens, carbs & fats/clean eating/exercise. You could likely

follow BFL and see if you are within your alloted WW points to see if

it is in line?

[Guest guest]

Welcome ! I'm a WW Lifetimer and still weigh in monthly.

I was following flex when I started BFL and it was too hard. I

switched over and I'm probably still in the 26-32 point range but I'm

not tracking it that way. The BFL is much cleaner eating and lots more

protein. I was a pretty healthy eater already and this wasn't much of

a switch at all.

I do my program 100% at home. Full disclosure: I have a full gym with

a treadmill, stairstepper, 2 benches (one inclines and has a leg

attachment), and dumbells from 5#-60#. Years ago when we first tried

BFL we decided to invest the money in our home gym and not pay someone

monthly. I do miss the gym for the various cardio equipment and some

of the pulley stuff though. I keep toying with the idea of getting a 6

week membership to mix it up a bit. Plus, they measure bodyfat at the

gym.

Anyway, you can do it. Do your best everyday and you will change your

body.

Good luck! Jami

PS I think on the WW Fitness board there are women doing the BFL

workout with WW nutrition.

>

> Hi, I am really interested in changing my body. I am thinking Body

> for Life could be the answer. Is there a difference between The Body

> for Life for Women and the original book? Can this program be done

> easily at home or do I need to belong to a gym. I also follow Weight

> Watchers. Has anyone had good results following the WW eating and

> Body for Life Exercise program? Any information or encouragement

> would be appreciated. Thank you,

>

[Guest guest]

Hi ,

I am coming here from WW. I think that flex really screwed up my metabolism.

Constantly eating less and less and eventually, i am in starvation mode w/o even

knowing it. And I dont think that WW allows enough calories for the workouts

that are in BFL.

You can do this at home, if you have the exercise equipment! I belong to the

gym, but I dont go there 6 days a week. I bought 3 sets of dumbells, and I am

planning on doing ym weight workouts here at home.

Good luck!

New

Hi, I am really interested in changing my body. I am thinking Body

for Life could be the answer. Is there a difference between The Body

for Life for Women and the original book? Can this program be done

easily at home or do I need to belong to a gym. I also follow Weight

Watchers. Has anyone had good results following the WW eating and

Body for Life Exercise program? Any information or encouragement

would be appreciated. Thank you,

[Guest guest]

Kari--my point exactly! Have you gotten the EFL book? how do you follow that?

I am thinking of joining ediets for EFL, or is the book enough?

Re: New

Hi and other newbies from WW,

I did weight watchers and did great. I didn't eat too much junk once

I got the hang of it. Although there were times I saved my

points to pig out. I also did the flex plan.

My problem? Once I got down to the 18 points a day...I was

starving!!! I exercised ALL the time. I was one fat, mushy exercise

bunny! GAG! Being mushy is no fun. Starving 90% of the time was no

fun. At 1200, 1400 and even 1800 calories I do not lose weight. I

have to eat more in the 2000 calorie range. I do have days where I

am around 1600 and others where I am up to 2500....that's a lot of

clean food by the way!

I don't count calories...I occasionally do to get an idea of where I

am so I can tell what is working. If that makes sense. I use the

basic BFL measurements of the hand, fist for carbs and protein.

KISS...Keep It Simple Sister. I think that works best for me.

Now I do WAYYY less cardio and WAY more weight lifting. I was very

intimidated by lifting especially in the gym with the big dogs! I

got a trainer for the basics and just recently fired him. I now lift

heavier weights than ever and work to failure. It is very effective

for me so far. I am way more tired than I have ever been in a good

way.

So far I have done EFL - the food part and exercised with lots of

cario and lost 25 pounds in about 8 months. In two months of less

cardio, more food and a new weight routine for the last month...down

almost ten more pounds in a lot less time. Interesting. Eat more,

exercise less - well, exercise less but smarter! ;)Lift more.

Hope my story helps a bit.

Welcome and good luck,

Kari

>

>

> hi laura, and welcome to the group. A lot of us here have used

Weight watchers, myself included. The problem with weight watchers is

that there is too much flexibility to not eat clean. You can eat all

junk food you want, so long as you dont surpass your point range. You

could also eat all your points in one sitting, rather then spreading

meals out throught the day to keep your metabolism working. BFL

nutrition is totally different. Its designed to help your body rev up

its metabolism and become a fat-burning machine! The nutrition

elements of the program really support the exercise portions. Success

with BFL really is largely nutrition--about 80% actually. Id really

consider using the BFL approach to eating.

>

> Also, the BFL book and the BFL for women book are 2 different spins

on the same program. People have found success with both, personally

I prefer the original program. BFL for women isnt as " hard core " and

allows for " cheats " each day. Some peope even start with BFL for

women and then move into the original BFL version. It depends on what

is right for you! Good luck!

>

>

>

>

>

[Guest guest]

Sorry our internet went out...fence installer guy hit the cable.

Poor guy!

I do have the Eat for Life book, I use the files here, I search the

net...I enter recipes into fitday.com to see what the percentages of

protein/carbs/fat for easy reference. (Fitday.com is free) I also

have meals that fit from my own recipes.

I like to make the flank steak recipe from EFL book and then the next

night make fajitas with the leftovers. I pretty much do something

simple each week - chicken/salmon on the grill (plan for leftovers)

with noodles or potatoes or fruit and salad, tacos/sloppy joes or

some type of mexican thing like Mom's Enchileladas (EFL), chili or

soup one night, stir fry one night, one type of pasta - lots of

recipes for that, one night is leftovers and one night is a free

night. In these categories I look for meals that will work. This

adds a lot of variety without too much thinking. Last night we had a

white chili...excelent. Dh loves it and loves this food - great for

a meat and potatoes man. (He eats A LOT!)

I think you get a lot of support right here rather than doing

ediets. I joined after I had been on EFL for about 6 months and just

needed more ideas and someone to chat with (we had just moved)...had

I known, I would have been here a long time ago! Nevertheless, if

you like the concept of ediets, try it!!! Join me at the EFL

boards.

Kari

> >

> >

> > hi laura, and welcome to the group. A lot of us here have used

> Weight watchers, myself included. The problem with weight

watchers is

> that there is too much flexibility to not eat clean. You can eat

all

> junk food you want, so long as you dont surpass your point range.

You

> could also eat all your points in one sitting, rather then

spreading

> meals out throught the day to keep your metabolism working. BFL

> nutrition is totally different. Its designed to help your body

rev up

> its metabolism and become a fat-burning machine! The nutrition

> elements of the program really support the exercise portions.

Success

> with BFL really is largely nutrition--about 80% actually. Id

really

> consider using the BFL approach to eating.

> >

> > Also, the BFL book and the BFL for women book are 2 different

spins

> on the same program. People have found success with both,

personally

> I prefer the original program. BFL for women isnt as " hard core "

and

> allows for " cheats " each day. Some peope even start with BFL for

> women and then move into the original BFL version. It depends on

what

> is right for you! Good luck!

> >

> >

> >

> >

> >

[Guest guest]

Thnkas Kari,

I have been to ediets before, its ok. I just need ideas of foods, and it sounds

like the EFL book will work for that. I think my biggest problem is more food

than the exercise. I really want to make sure that i have this right,

especially in the beginning. I am going to go get EFL tomorrow and then make my

grocery list!! Anything you guys recommend as a MUST HAVE?? I am not much of a

sweets person, rather, I love fried satly things!

Re: New

Sorry our internet went out...fence installer guy hit the cable.

Poor guy!

I do have the Eat for Life book, I use the files here, I search the

net...I enter recipes into fitday.com to see what the percentages of

protein/carbs/fat for easy reference. (Fitday.com is free) I also

have meals that fit from my own recipes.

I like to make the flank steak recipe from EFL book and then the next

night make fajitas with the leftovers. I pretty much do something

simple each week - chicken/salmon on the grill (plan for leftovers)

with noodles or potatoes or fruit and salad, tacos/sloppy joes or

some type of mexican thing like Mom's Enchileladas (EFL), chili or

soup one night, stir fry one night, one type of pasta - lots of

recipes for that, one night is leftovers and one night is a free

night. In these categories I look for meals that will work. This

adds a lot of variety without too much thinking. Last night we had a

white chili...excelent. Dh loves it and loves this food - great for

a meat and potatoes man. (He eats A LOT!)

I think you get a lot of support right here rather than doing

ediets. I joined after I had been on EFL for about 6 months and just

needed more ideas and someone to chat with (we had just moved)...had

I known, I would have been here a long time ago! Nevertheless, if

you like the concept of ediets, try it!!! Join me at the EFL

boards.

Kari

> >

> >

> > hi laura, and welcome to the group. A lot of us here have used

> Weight watchers, myself included. The problem with weight

watchers is

> that there is too much flexibility to not eat clean. You can eat

all

> junk food you want, so long as you dont surpass your point range.

You

> could also eat all your points in one sitting, rather then

spreading

> meals out throught the day to keep your metabolism working. BFL

> nutrition is totally different. Its designed to help your body

rev up

> its metabolism and become a fat-burning machine! The nutrition

> elements of the program really support the exercise portions.

Success

> with BFL really is largely nutrition--about 80% actually. Id

really

> consider using the BFL approach to eating.

> >

> > Also, the BFL book and the BFL for women book are 2 different

spins

> on the same program. People have found success with both,

personally

> I prefer the original program. BFL for women isnt as " hard core "

and

> allows for " cheats " each day. Some peope even start with BFL for

> women and then move into the original BFL version. It depends on

what

> is right for you! Good luck!

> >

> >

> >

> >

> >

[Guest guest]

from dale,

ne, sounds like you've been through the wringer! I am so sorry.

Yes, the longer a PID goes undiagnosed the more damage can happen, but

you need to also realize that PID is a genetic defect and is often

accompanied by other genetic defects. A lot of people on this list have

PID plus something else. It takes time to sort it all out. Usually the

damage is related to sinuses, lungs and gut, but other organs ARE

affected.

Has your son started IVIG? If he has, then you may be beginning to see

some improvement in other areas besides just infection. I don't know

any of the doctors from Vanderbilt, but that's okay -- I don't know most

of the doctors in the world. I do know, by reputation, Dr. Conley at

St. Jude's in Memphis specializes in PID if you happen to live on that

end of Tennessee. But, I know that sadly, our " average " time for

diagnosis takes 8 years. That is way too long and something that the

Immune Deficiency Foundation and many others are trying to change.

The Immune Deficiency Foundation will mail you (free of charge) their

material. I highly recommend the Patient and Family Handbook to help

you understand CVID and what it affects. It's probably the best

resource out there. Their number is 1-800-296-4433.

Let us know if you have any further questions -- that's what we're here

for -- oh, and emotional support. No one understands like another

mother (or dad) of a PID!

In His service,

dale

[Guest guest]

ne -

Welcome to the group - my name is Dayna, I am the Mom to 3 pid'ers, all

three are on IVIG every three weeks.

I'm sorry your road has been rough, I hope this group is helpful to you.

A couple links, in case you don't have them

www.igliving.com <http://www.igliving.com/> a new magazine devoted to

patients on IVIG - it's free, & you can subscribe online

www.immunediseae.com <http://www.immunediseae.com/> A Baxter site, one

of the makers of IVIG, there is an informative website (there is a cool

thing there my 5 year old likes - it's an immune related video game and

some neat patient profiles in the MyStory section (I'd order the newly

diagnosed kit they put out)

www.info4pi.org <http://www.info4pi.org/> a " clearing house " of sorts

run by the Modell Foundation (they have some nice stuff if your son is

in school for the school nurse)

www.primaryimmune.org <http://www.primaryimmune.org/> The Immune

Deficiency Foundation (they have a wonderful patient and family handbook

along with many other great publications, including a school guide)

www.jmfworld.org <http://www.jmfworld.org/> The Jeffery Modell

Foundation

www.ipopi.org <http://www.ipopi.org/> the international patient

organization for primary immunodeficiency

www.midf.org <http://www.midf.org/> Michigan Immune Deficiency

Foundation (a good collection of links here)

All the best to you. Welcome aboard!

Dayna

new

Hi! My name is ne and I am new to this group. I am a mother of a 5

year old son with CVID and svere selective IGM deficiency. I am having

alot of trouble understanding this disease because he has so many other

diagnosis. It is hard to know if they are all related, he wasnt

diagnosed

with the PID until 4/05. He suffers from white matter degenerative

disease, seizures, IBS, Neurogenic bowel and bladder, atelectasis,

polyarthritis, heart problems, in fact you name it he has it. From what

I

read the longer a PID goes undetected the more damage it does to

internal

organs and that it was I think happened. He has practically lived at

Vanderbilt since birth and no one found the PID for 4 years! Has anyone

had a similar problem?

--

___________________________________________________

Play 100s of games for FREE! http://games.mail.com/

[Guest guest]

Thankyou so much!

new

Hi! My name is ne and I am new to this group. I am a mother of

a 5

year old son with CVID and svere selective IGM deficiency. I am

having

alot of trouble understanding this disease because he has so many

other

diagnosis. It is hard to know if they are all related, he wasnt

diagnosed

with the PID until 4/05. He suffers from white matter degenerative

disease, seizures, IBS, Neurogenic bowel and bladder, atelectasis,

polyarthritis, heart problems, in fact you name it he has it. From

what

I

read the longer a PID goes undetected the more damage it does to

internal

organs and that it was I think happened. He has practically lived at

Vanderbilt since birth and no one found the PID for 4 years! Has

anyone

had a similar problem?

--

___________________________________________________

Play 100s of games for FREE! http://games.mail.com/

[Guest guest]

Welcome ne. We are in a similar boat here. I have two boys whose

main diagnosis is Shwachman-Diamond Syndrome. They also have a slew of

other diagnoses. but we just pretty much put them all under the big

" Shwachman-Diamond " umbrella. When was first found to have Low total

IgG and IgM and then several IgG subclasses, I asked about the relationship

this had to him having SDS and the immuno and hem we had at the time really

could not say.but they felt they were two separate disorders. The immuno

actually told us that " just drew the wrong straw twice. " Now that we

are over 8 years into the journey and I know more than I did back then, I

can't say that it ISN'T because of SDS related bone marrow dysfunction..

There are articles out there-very few. Anyway, my point is, we may never

know how they are all related or if they are related. The best we can do is

to treat what we know and can.

I don't know the average length of time it takes for something like CVID to

be discovered or other PIDs.. I do know that there are a lot of kids with

rare diseases that take years to figure out. In our case, had had

several tests before we moved here that showed he had low

immunoglobulins.but none of the doctors where we were at the time followed

up on it.

I am sure there will be folks who can answer your questions in more detail.

You'll find lots of info here!

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

ne

Sent: Friday, March 24, 2006 3:00 PM

Subject: new

Hi! My name is ne and I am new to this group. I am a mother of a 5

year old son with CVID and svere selective IGM deficiency. I am having

alot of trouble understanding this disease because he has so many other

diagnosis. It is hard to know if they are all related, he wasnt diagnosed

with the PID until 4/05. He suffers from white matter degenerative

disease, seizures, IBS, Neurogenic bowel and bladder, atelectasis,

polyarthritis, heart problems, in fact you name it he has it. From what I

read the longer a PID goes undetected the more damage it does to internal

organs and that it was I think happened. He has practically lived at

Vanderbilt since birth and no one found the PID for 4 years! Has anyone

had a similar problem?

--

_____

[Guest guest]

*

I don't know the average length of time it takes for something like CVID

to

be discovered or other PIDs.. I do know that there are a lot of kids

with

rare diseases that take years to figure out. In our case, had had

several tests before we moved here that showed he had low

immunoglobulins.but none of the doctors where we were at the time

followed

up on it.

I believe an IDF study showed that the average amount of time from onset

of symptoms to diagnosis was 9.2 years.

Dayna

_____

[Guest guest]

cassie wrote:

> So the fact of not getting treatment for the consistently low

> IgG could cause problems with the ears and sinus'?

> Cassie

Absolutely! Sinus infections, bronchitis, pneumonia, ear infections and

diarrhea are the most common problems with both low IgG or low IgA. But

with IgG we also hear a lot about muscle ache, fatigue, general

infections, etc, also. And with low IgG you run the risk of much more

serious diseases -- you don't want your kid not protected against polio

and tetanus and all that cruddy stuff. IVIG replaces the IgG and gives

them protection against all the vaccinated diseases plus normal stuff

like strep and staph and some colds and flus that the general population

has built protection against.

Treatment with IVIG replaces the IgG and should lessen the infection

rate and help the body to build up and get healthier. My daughter was

able to go to college, take cardio-kickboxing classes, dance, party (too

much) and have a mostly normal life.

I can't remember 's story, but I hope that you are considering

treatment for him if he's constantly dealing with infections.

In His service,

dale

[Guest guest]

Welcome, Terri & ne! I am recently joined the group and I can

tell you that these moms (and dads) have provided me with a wealth of

information and boatloads of encouragement!!! I am sure it won't take

long for you to agree. :-)

-Rogena (Mom to 4 boys, including Cole -IgA & IgG Subclass Def, GERD,

possible Celiac)

[Guest guest]

Welcome na,

YOu have found a wonderful group! Keep asking questions, and let me

know if I can do anything to help you! I too am pretty new here, but

you feel right at home pretty quick!

Ana 14 mo

[Guest guest]

Ask your OS about McConnel taping. Some people on the

list have had success with it, myself included.

PT generally show you how to do the taping, so if your in pt, ask

there.

In the archives someone has generically typed up how to tape.

However everyone's knees are a little different. We each have a

little bit different issues, so a good way to tape my knees, may not

be so good for someone who's platella glides a little differently.

Connie

>

> I just joined.

> I'm 36 and fell on ice 4 months ago leading to direct trauma to

my knee. I'm left with Chondromalacia. The first ortho I went to

didn't even xray me because my foot was hurting more then my knee.

The 2nd ortho made the diagnosis, told me to strengthen my inner

thigh muscles, wear a knee brace as needed and the usual deep knee

bending avoidance exercises. I am finding it hard to do my usual 4

x per week aerobic exercise (which is basically walking the

treadmill now since I can't seem to even ride the bike with no

resistance because knee bending hurts so much) as well as just plain

walk on a daily basis at work and home. I basically work through the

pain everyday. I'm now finding that wearing the brace (you know the

one with the hole cut out for your knee) hurts my knee more than

without. I'm going back to the ortho tomorrow. I've order the Cho-

Pat brace and am just so frustrated. From reading all your posts and

Darla's Chondromalacia page, this seems like a chronic

> problem and that surgery should be avoided. Do you all think I

should not wear the brace. Is that the immobilization " don't " you

emailed when I joined the group. Do any of you have any experience

with Glucosamine?

>

>

>

> __________________________________________________

>

[Guest guest]

It is possible that your knee brace is keeping your swelling under control.

Everyone is different, the only way to know if the knee brace is helping or not,

go a day without it, or take it to work with you and if you decide you need it,

put it on. I find my knees hurt worse with my knee braces, I have 3 different

types and I cannot use any of them. I have however, heard great things about the

cho-pat strap. I have not tried it yet. I think I am afraid of another let down.

Best of luck to you!

" D. A. " <redphys@...> wrote: I just joined.

I'm 36 and fell on ice 4 months ago leading to direct trauma to my knee. I'm

left with Chondromalacia. The first ortho I went to didn't even xray me because

my foot was hurting more then my knee. The 2nd ortho made the diagnosis, told me

to strengthen my inner thigh muscles, wear a knee brace as needed and the usual

deep knee bending avoidance exercises. I am finding it hard to do my usual 4 x

per week aerobic exercise (which is basically walking the treadmill now since I

can't seem to even ride the bike with no resistance because knee bending hurts

so much) as well as just plain walk on a daily basis at work and home. I

basically work through the pain everyday. I'm now finding that wearing the brace

(you know the one with the hole cut out for your knee) hurts my knee more than

without. I'm going back to the ortho tomorrow. I've order the Cho-Pat brace and

am just so frustrated. From reading all your posts and Darla's Chondromalacia

page, this seems like a chronic

problem and that surgery should be avoided. Do you all think I should not wear

the brace. Is that the immobilization " don't " you emailed when I joined the

group. Do any of you have any experience with Glucosamine?

__________________________________________________

[Guest guest]

New

>Do any of you have any experience with Glucosamine?

I used it for 3 years, and I know it seemed to make the anti-inflammatories

I was taking work better. I quit it a few months back because I got a scare

with a borderline high glucose level while on it. I can't say it was the

glucosamine, but my glucose levels have been normal since.

Mike

MT

[Guest guest]

*This message was transferred with a trial version of CommuniGate Pro*

..<<< Do any of you have any experience with Glucosamine?>>>

I use MSM Glucosamine and it helps me alot. When I forget it for a few days,

my knees start hurting and giving me problems.

It takes a few weeks to start working.

Joya

[Guest guest]

Thanks. Just got my cho-pat strap in the mail and steroids to my knee. Will

probably try the strap tomorrow once the tenderness from the injection goes

away.

shannon webb <ss_webb2003@...> wrote:

It is possible that your knee brace is keeping your swelling under control.

Everyone is different, the only way to know if the knee brace is helping or not,

go a day without it, or take it to work with you and if you decide you need it,

put it on. I find my knees hurt worse with my knee braces, I have 3 different

types and I cannot use any of them. I have however, heard great things about the

cho-pat strap. I have not tried it yet. I think I am afraid of another let down.

Best of luck to you!

" D. A. " <redphys@...> wrote: I just joined.

I'm 36 and fell on ice 4 months ago leading to direct trauma to my knee. I'm

left with Chondromalacia. The first ortho I went to didn't even xray me because

my foot was hurting more then my knee. The 2nd ortho made the diagnosis, told me

to strengthen my inner thigh muscles, wear a knee brace as needed and the usual

deep knee bending avoidance exercises. I am finding it hard to do my usual 4 x

per week aerobic exercise (which is basically walking the treadmill now since I

can't seem to even ride the bike with no resistance because knee bending hurts

so much) as well as just plain walk on a daily basis at work and home. I

basically work through the pain everyday. I'm now finding that wearing the brace

(you know the one with the hole cut out for your knee) hurts my knee more than

without. I'm going back to the ortho tomorrow. I've order the Cho-Pat brace and

am just so frustrated. From reading all your posts and Darla's Chondromalacia

page, this seems like a chronic

problem and that surgery should be avoided. Do you all think I should not wear

the brace. Is that the immobilization " don't " you emailed when I joined the

group. Do any of you have any experience with Glucosamine?

__________________________________________________

[Guest guest]

WASHINGTON - An antibiotic linked to a growing number of reports of liver failure, including four deaths, should bear stricter warnings about its effect on the liver, according to an internal Food and Drug Administration memo. The drug's manufacturer, Sanofi-Aventis, said Friday it was in talks with FDA officials about those reports. ADVERTISEMENT The FDA has received reports of 12 cases of acute liver failure, including the four deaths, in patients treated with Ketek,

according to a copy of the memo shown to The Associated Press. FDA safety evaluators also uncovered 23 other cases where patients suffered serious liver injuries after receiving the antibiotic, which is formally called telithromycin. The reports, when considered in proportion to the number of prescriptions filled for Ketek, exceed what's been seen in similar antibiotics, according to the memo. The contents of the May 16 memo were first reported Friday by The Wall Street Journal. Wassel and Dr. Brinker, both of the FDA's Division of Drug Risk Evaluation, recommended in the memo that the FDA consider restricting the use of Ketek — or even withdrawing it — should the liver failure rate rise to levels seen in another antibiotic, Trovan, before its use was restricted in 1999. However, the two wrote that they cannot determine whether the drug's risk is currently higher than that posed by any other of the various antibiotics

associated with liver problems. "Nonetheless, the rising trend of reporting rates associated with telithromycin is of concern," the memo reads in part. The memo was forwarded through Dr. Mark Avigan, director of the FDA's Division of Drug Risk Evaluation, to the head of the agency's Division of Anti-infective and Ophthalmologic Products, Dr. Janice Soreth. FDA spokeswoman Bro said it would be "premature" to discuss any steps the agency might take. The current FDA-approved label for Ketek warns of liver disfunction that can be severe but is "usually reversible." Sanofi-Aventis SA said it continues to believe Ketek is safe and effective when used as directed, adding that it continued to discuss the liver reports with the FDA. "These complex evaluations require careful and rigorous analysis with leading experts before drawing any definitive conclusion," the company said in a statement. In January, the ls of

Internal Medicine published a report detailing three cases of severe liver problems, including one death, in patients at a North Carolina hospital after they began taking Ketek. That publication may have stimulated the reporting of further problems associated with Ketek, skewing perceptions of its apparent risk when compared to other drugs, according to the memo. Furthermore, reporting rates are typically higher with newer drugs. The FDA approved Ketek in April 2004. Congress is investigating how the FDA has handled Ketek, including problems with a clinical trial that was supposed to show the drug's safety, according to The Wall Street Journal report. Irregularities in the execution of that trial left the FDA unable to make a "meaningful assessment" of liver safety concerns associated with the drug, according to the memo. ___

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