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Hi Rosemary,

I'm not blaming tumors or NF2 for my weight challenges, was just looking for correlation and somewhere to start.

I'm sure you have posted a bunch related to this, you seem like a really determined mother. The only problemm is 9 out of 10 times I have no idea what your mails mean.

I have read all about Louis' diet and all supplements. Two things, I am addicted to milk and other dairy products, and financially it would be impossible to even try to afford all of them supplements.

I am 26 now, and even when diagnosed 13 years ago, I have always been thin but not this thin.(my highest weight ever was 120 pounds) I'm scared obviously and go in for blood and other tests tomorrow hoping to find whats going on with me and a way can "fix" it.

-Caren

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Hi Caren, you may remember I posted last year about Louis profile results,...they showed the beginnings of catabolic wasting.....now Louis was actually slightly over -weight, but we could see in his profiles that he had has this happening already,(even with only one very small tumor) and consequently he had the beginnings of muscle loss as well.

but at this early stage, he just looked pudgy, so more like a loss of contour/definition...... I think you can lose weight, or actually gain weight (particularly with loss of muscle tone) with this...

you can work on this, correct it, rebalance it and improve your overall health...

also, whilst you are suggesting that tumor burden is giving you this problem (true),... Louis’ profiles show that the mutation is giving Louis this problem..so it is a bit like the chicken and the egg here, as most things are to do with the body.

hence his diet, his supplements, which have slimmed him down, he now has much more muscle tone, and I can also say he has more energy than any other soccer player on his team, he just doesn’t stop running...

he used to eat an awful lot, it would pass straight through him, without his body taking up the necessary goodies to restore/replace good cell function as a result of his mutation , and he would just have to eat a lot to keep going...

so based on restoring balance in his body, he is on a gluten free, high protein, high good fat diet, min dairy. I posted a lot about this last year, if you are interested.

I hope you find something that works for you. looking into how this is affecting your whole body, is a very good first step.

I had a bad day Tuesday, at Dr. for check-up (just regular dr.) she took my weight, i have lost 11 pounds since July, those of you who have met me or have seen pictures know that's not a good thing. I am 5'3 " and weigh 77 pounds. I was researching for a correlation between NF2 and weight struggles, I found the following....

Why Solid-Tumor Weight Loss Occurs

When you're sick or injured, your body releases substances into the bloodstream that promote healing. This reaction increases your metabolic rate, which causes you to burn more calories than normal. When your body has healed, your metabolism returns to normal.

When your body fights a tumor, however, this response can continue indefinitely. The tumor produces substances that alter the metabolism of macronutrients - protein, carbohydrates, and fat - and cause the body to burn calories faster than they can ordinarily be replaced. The result is catabolism, the breakdown of muscle and other tissue.

If your metabolic problems are not addressed, eating more food or using conventional nutritional supplements may not be enough to prevent or reverse the weight and muscle loss.

-Caren

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"If you metabolic problems are not addressed" how would they address them? marie

weight

I had a bad day Tuesday, at Dr. for check-up (just regular dr.) she took my weight, i have lost 11 pounds since July, those of you who have met me or have seen pictures know that's not a good thing. I am 5'3" and weigh 77 pounds. I was researching for a correlation between NF2 and weight struggles, I found the following....Why Solid-Tumor Weight Loss Occurs When you're sick or injured, your body releases substances into the bloodstream that promote healing. This reaction increases your metabolic rate, which causes you to burn more calories than normal. When your body has healed, your metabolism returns to normal. When your body fights a tumor, however, this response can continue indefinitely. The tumor produces substances that alter the metabolism of macronutrients - protein, carbohydrates, and fat - and cause the body to burn calories faster than they can ordinarily be replaced. The result is catabolism, the breakdown of muscle and other tissue. If your metabolic problems are not addressed, eating more food or using conventional nutritional supplements may not be enough to prevent or reverse the weight and muscle loss. -Caren

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if your weight has reached a point that it is scary to you, perhaps you could, discuss with you doc about using some of the milk protein products they recommend for HIV and cancer patients.... am not prescribing here, but if you followed those links that Joyce posted, you would have seen how immunocal is used for these patients to redress catabolic wasting/ muscle loss....

so perhaps if only one supplement could be afforded, maybe this one is the best for you...and worth while discussing with you doc, armed with all their cancer/hiv trial info. if you are a dairy freak, you’ll find it yummy. (it is actually almost lactose free, whey is kind of like reduced milk protein, similar to mother’s milk, and hence builds up immune system)

and one other simple thing you could do is just change your breakfast routine,,,,have protein, preferably lipid/protein bundle

i.e., eggs and bacon, eggs and sausages, eggs and cooked tomatoes or cooked mushrooms, kippers/ fish, baked beans and eggs, that kind of thing, and don’t have high glycaemic carbohydrates like cereals/toast....just my suggestions, trying to help you.

i have seen in those dl discuss this with you doc tomorrow, Hi Rosemary,

I'm not blaming tumors or NF2 for my weight challenges, was just looking for correlation and somewhere to start.

I'm sure you have posted a bunch related to this, you seem like a really determined mother. The only problemm is 9 out of 10 times I have no idea what your mails mean.

I have read all about Louis' diet and all supplements. Two things, I am addicted to milk and other dairy products, and financially it would be impossible to even try to afford all of them supplements.

I am 26 now, and even when diagnosed 13 years ago, I have always been thin but not this thin.(my highest weight ever was 120 pounds) I'm scared obviously and go in for blood and other tests tomorrow hoping to find whats going on with me and a way can " fix " it.

-Caren

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well that would depend on who you asked Marie!!

" If you metabolic problems are not addressed " how would they address them? marie

weight

I had a bad day Tuesday, at Dr. for check-up (just regular dr.) she took my weight, i have lost 11 pounds since July, those of you who have met me or have seen pictures know that's not a good thing. I am 5'3 " and weigh 77 pounds. I was researching for a correlation between NF2 and weight struggles, I found the following....

Why Solid-Tumor Weight Loss Occurs

When you're sick or injured, your body releases substances into the bloodstream that promote healing. This reaction increases your metabolic rate, which causes you to burn more calories than normal. When your body has healed, your metabolism returns to normal.

When your body fights a tumor, however, this response can continue indefinitely. The tumor produces substances that alter the metabolism of macronutrients - protein, carbohydrates, and fat - and cause the body to burn calories faster than they can ordinarily be replaced. The result is catabolism, the breakdown of muscle and other tissue.

If your metabolic problems are not addressed, eating more food or using conventional nutritional supplements may not be enough to prevent or reverse the weight and muscle loss.

-Caren

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Caren wrote : I am addicted to milk and other dairy products.

M sees the problem, you've left COOKIES off your shopping list . :-)

Seriously though I hope you sort out your problems Caren

((( )))) from me M

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And add lots

of donuts Caren J. My dad’s doctor told him to

eat lots of sweets to bulk up his weight when he was on dialysis. I really

hope that your situation can be resolved quickly.

Fred Getz

Re: weight

Caren wrote : I am addicted to milk

and other dairy products.

M sees

the problem, you've left COOKIES off your shopping list . :-)

Seriously

though I hope you sort out your problems Caren

(((

)))) from me M

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not being a spoil sport but the sweets and refined carbs will do the

opposite for someone who is battling tumors and muscle wasting and

diabetes. eat your steak, chikin, eggs, and protein caren.

In NF2_Crew , Fred Getz wrote:

> And add lots of donuts Caren :-). My dad's doctor told him to eat

lots of

> sweets to bulk up his weight when he was on dialysis. I really

hope that

> your situation can be resolved quickly.

>

>

>

> Fred Getz

>

>

>

> Re: weight

>

>

>

> Caren wrote : I am addicted to milk and other dairy products.

>

> M sees the problem, you've left COOKIES off your shopping list . :-

)

>

> Seriously though I hope you sort out your problems Caren

>

> ((( )))) from me M

>

>

>

>

>

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Milkshakes too Caren! Trips to Dairy Queen!

Carol

RE: weight

And add lots of donuts Caren J. My dad’s doctor told him to eat lots of sweets to bulk up his weight when he was on dialysis. I really hope that your situation can be resolved quickly.

Fred Getz

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Subject: Re: weight

Hi Caren, We thought you looked smaller at the Con and have been quite concerned, but to see the numbers makes it that much scarier. We hope they find some basic problem that is easily treated for you and that it can reverse this for you, and soon. Thats such a large percentge of your body weight....We don't know how you manage kiddo...... that in such a trooper!!!! ( and we mean that in a loving way) Big Hug to you Caren We wish you the very best tomorrow! Take Care!

Sheryn &

_______________

Hi Rosemary,I'm not blaming tumors or NF2 for my weight challenges, was just looking for correlation and somewhere to start.I'm sure you have posted a bunch related to this, you seem like a really determined mother. The only problemm is 9 out of 10 times I have no idea what your mails mean. I have read all about Louis' diet and all supplements. Two things, I am addicted to milk and other dairy products, and financially it would be impossible to even try to afford all of them supplements.I am 26 now, and even when diagnosed 13 years ago, I have always been thin but not this thin.(my highest weight ever was 120 pounds) I'm scared obviously and go in for blood and other tests tomorrow hoping to find whats going on with me and a way can "fix" it.-Caren

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Caren

That explains why I have not gained a pound in the past 20 odd years. I'm 5'7" 168# same as the old self.

BEANS

weight

I had a bad day Tuesday, at Dr. for check-up (just regular dr.) she took my weight, i have lost 11 pounds since July, those of you who have met me or have seen pictures know that's not a good thing. I am 5'3" and weigh 77 pounds. I was researching for a correlation between NF2 and weight struggles, I found the following....Why Solid-Tumor Weight Loss Occurs When you're sick or injured, your body releases substances into the bloodstream that promote healing. This reaction increases your metabolic rate, which causes you to burn more calories than normal. When your body has healed, your metabolism returns to normal. When your body fights a tumor, however, this response can continue indefinitely. The tumor produces substances that alter the metabolism of macronutrients - protein, carbohydrates, and fat - and cause the body to burn calories faster than they can ordinarily be replaced. The result is catabolism, the breakdown of muscle and other tissue. If your metabolic problems are not addressed, eating more food or using conventional nutritional supplements may not be enough to prevent or reverse the weight and muscle loss. -Caren

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  • 1 year later...

Sandy , concerning weight loss, were you ever able to regain your

pre hypo weight, or do you think you will now that you are on a

correct dose.?--I must admit , it is very hard for me to accept that

I will just continue to gain and gain....maybe if I felt like

exercising again, that will help, so in hopes to get my doage up so

that will happen. I have been udiagnosed for so long, that I hope and

pray that not too much damage has been done to the rest of my system.-

--jeanne

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Jeanne, I suspect as many do, that before I went hyperT/Graves in Nov 2001, that

I was hypothyroid before, without benefit of diagnosis. I firmly believe that

stress from home and work brought out the hyperT/Graves, which normally makes

people lose weight. Unfortuately, that happens mostly for the young people on

the weight loss. I was overweight before hyperT/Graves, and I'm still

overweight. However, it wasn't until i got to a point where things were

finally working again after I started Armour, and I felt better, that the

weight started slowly coming off. I was 47 when this all started with the

hyperT, and I don't know that I'll ever be the 'ideal weight' because I never

was before I knew of these thyroid issues. I was overweight with my last son,

born in 1986, and I am still overweight, just 25 to 30 lbs lighter. I hope it

does continue, and if I were a 'dieter', it might do just that.

SandyE~Houston

weight

Sandy , concerning weight loss, were you ever able to regain your

pre hypo weight, or do you think you will now that you are on a

correct dose.?--I must admit , it is very hard for me to accept that

I will just continue to gain and gain....maybe if I felt like

exercising again, that will help, so in hopes to get my doage up so

that will happen. I have been udiagnosed for so long, that I hope and

pray that not too much damage has been done to the rest of my system.-

--jeanne

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