Re: No appetite - who else?

[Guest guest]

Marcia, I think you are really onto something important here! I just wish

there were some way we could get more serious attention given to this weight

situation.

During the first six or seven years after diagnosis of CFIDS, I kept getting

thinner and thinner (friends were beginning to comment and whisper comments

about anorexia and bulimia. I had been thin but very muscular and very

physically active before getting sick. When I got sick, I got no exercise,

but continued to eat as before, which was a fairly healthy diet. Then I was

severely injured in a car crash, had two major surgeries, and started to

gain weight. Since then, nothing stops the weight gain. I've tried eating

less than 10 grams of carbohydrates a day while at the same time eating less

than 1000 calories a day. I gained half a pound in two weeks doing that, so

I stopped. It was not easy to do, and it had the reverse effect to what I

wanted.

How many of us are there who are experiencing this? And is there anything

we can do about it?

Wishing everyone the best,

Re: No appetite - who else?

Hi:

I have had just the opposite. Always want food, feel like nothing

satisfies hunger, and gained 100 lbs in first year of illness.

Teena

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

hi vickie

i have a slight motility promblem by testing years ago and if i over eat a

large quanity of food and /or a very high fat meal( too much fat , too many

fat rich meats etc..) i am unable to eat again for hours: it just sits

there so i try to eat 4 modest meals thruout the day and not over do my

fat each meal as fatty foods decrease stomach motility , fatty rich foods +

fats slow down the transit/jmotility time in the gastroinettinal track ;

but i am still underweight., .recently i started using betaine hcl and a

plant enzyme( working the plant enzyme up slowly as with history of stomach

ulcer years ago , too much protease at one time can cause

discomfort/aggrevate it) + with a history of gastroespphaeal reflux i have

to slowly work up the betaine hcl. ..my weight is slowly going up but if i

miss a meal and /or am too active than i lose a tiny bit weight wise but

hate staying in bed when i am not that sick

.....i probalby need more betaine hcl and plant enzyme than i am on but have

too many stomach/intestinal promblems to go higher than where i am now .

i think dr cheny found patients needed from 1/2 capsule - 7 capsules a meal

of betaine hcl. i am .at 2-3 capsules per meal betaine hcl.

i used to have very low blood sugar to the point i was confused, trouble

tninking , flashing in my eyes despite the fact i was eating huge amounts

of food at one time: gorging on foods as raveanous at that time... (

sleeping 12-14 hours a day at that time meant i was going too long between

meals)..what helped me was making sure i eat every two to three hours and

having some meat ,fish , chix , cheese/dairy , egg, poultry etc at each

meal especailly breakfast meal ..... protein foods stablizes your blood

glucose level and i always leave the house with emergency snacks in case i

need to eat .( use a low carb bar from trader joes)... i rarely get any

flashing in my eyes and cogntive issues usually due to fatigue. ...and i am

forcing myself to eat early in the am but its hard getting good quality

sleep having to go back to sleep sitting up on many pillows.

binging large quanities of food at one time and/or too many simple refined

white , sugar foods maybe causing too much insulin to be relased so u end

up with very low blood sugar ... moderation at one time and frequent

meals/snack every two hours or so may help the low blood sugar ( milk is

great for low blood sugar: lactose provides immediate sugar for your body,

protein stablize blood sugar and fat calories but some are dairy

intolerant)

i found taking magnesium would speed up my digestive tract as well as

help my magneiium defiicney which is common to cfids patients but short of

getting diarhea from too much magnesium.\ ..i eat plenty of insoluable

fiber which i assume is helping move my gatrointetinal tract ...went thru

just about all the commerical fiber products without much help plus senna

etc..

a few days ago i started taking again at the suggestinon of my

altnernative person metagenics probioplex intensive care as despite all

the stuff i have tried my gastro intestinoal tract is far from normal ( it

has something in it which kills the bad bacteria)

i also added on my own: metagenics CandiBactin Br which helps purge your

gastrointesional tract of undesrable stuff...and toeghter its cleaning out

my system very well ( hurts my abdomin at the large amounts intitally but

i used to have hurt abdomen every three days before this : less of a

promblem each day in terms of abdomen soreness as my system is cleaning out

)

.. wonderful now having a realtively empty stomach for the first time in

awhile, i am hungry!!!( luxury in this illness) ...

taking their ultraclear product , ultraclear sustain DIDNT HELP

i am tolearting garlic capsules daily to help kill some of the pathogens

and use fresh garlic in cooking when possible

i think rich was rite making tackling leaky gut a priority in his treatment

suggestions protocl. ....

good luck vickie , mike and their are a few of us pwc who are constantly

battling trying to gain weight aganist the majority who just look @ food

and gain weight,...

.. i have a history of a lean mother and grandfather so lean gene not

good with this illness

good luck teallk

> [Original Message]

> From: Vickie <vickie_taylor@...>

> < >

> Date: 7/30/2005 2:25:27 PM

> Subject: Re: Re: No appetite - who else?

>

> On Sat, 30 Jul 2005 00:57:47 -0000 " yakcamp22 " <yakcamp22@...>

> writes:

> I am surprised that there aren't more skinny PWCs like myself due

> to lack of motility in the digestive system. I lose my appetite

> after I eat and the food just seems to sit there in my stomach

> and/or intestines.

> ******

>

> Mike,

> I was a skinny PWC until recent years. I think I have the stomach and

> intestine motility problem you are referring to. But now it has gotten

> so bad, that I get low blood sugar attacks, and I compensate by eating

> high calorie foods or bingeing.

>

> Does anybody know how to increase gastrointestinal motility? I think the

> digestive enzymes and HCL help and also peppermint. But they don't help

> enough. Maybe I am not taking enough of them.

>

> Vickie

>

>

[Guest guest]

I also am not hungry until about 4pm but if I make myself eat anyway in the

morning then I am hungry for dinner earlier. I learned that your body doesn't

like one meal a day, it likes small meals throughout the day. And indeed, if I

eat more often I find that I am losing more weight.

Also there are many types of fiber. Some people react negatively to one type

such as psyllium, but do better with other types. Some work more on upper

intestines and others better on lower intestines. I would suggest trying

various forms of fiber.

Doris

[Guest guest]

Thanks for your very good suggestions. I'm inspired to try harder to

improve my digestive functioning.

Vickie

On Sat, 30 Jul 2005 23:17:50 -0400 " tea lk " <48tealk17@...>

writes:

>

> hi vickie

> i have a slight motility promblem by testing years ago and if i

> over eat a

> large quanity of food and /or a very high fat meal( too much fat ,

> too many

> fat rich meats etc..) i am unable to eat again for hours: it just

> sits

> there so i try to eat 4 modest meals thruout the day and not over

> do my

> fat each meal as fatty foods decrease stomach motility , fatty rich

> foods +

> fats slow down the transit/jmotility time in the gastroinettinal

> track ;

[Guest guest]

I once had the sort of gastric problems being discussed -lots of suffering-and

then I didn't anymore. I have often tried to remember what I might have done to

change it. I am not entirely sure, since at the time I was at my foggiest, but I

used to have my stomach massaged by my therapist. I will ask her what she

remembers next time I see her, but I think it made a big difference over time.

I am not completely free of symptoms, but it keeps getting better.

I think the b12 helps, and I am sure that both the homeopathic HGH and the

pituitary extract are helping. There is no doubt in my mind that the hHGH has

improved the tone/strength of my skeletal muscles, so maybe those inside too.

The b12 helps w. debilitating stress and w. fatigue, (as well as cognition).

Adrienne

Re: Re: No appetite - who else?

On Sat, 30 Jul 2005 00:57:47 -0000 " yakcamp22 " <yakcamp22@...>

writes:

I am surprised that there aren't more skinny PWCs like myself due

to lack of motility in the digestive system. I lose my appetite

after I eat and the food just seems to sit there in my stomach

and/or intestines.

******

Mike,

I was a skinny PWC until recent years. I think I have the stomach and

intestine motility problem you are referring to. But now it has gotten

so bad, that I get low blood sugar attacks, and I compensate by eating

high calorie foods or bingeing.

Does anybody know how to increase gastrointestinal motility? I think the

digestive enzymes and HCL help and also peppermint. But they don't help

enough. Maybe I am not taking enough of them.

Vickie

[Guest guest]

Daisy -- This is going to sound weird, but I think I've heard that if

one doesn't eat " enough " , even if one is overweight, the body takes

that as if one is trying to starve oneself, so it holds onto the

weight to protect itself. So perhaps three small, but not too small,

balanced meals would be the solution? I don't know.

The difficult part for most of us, is that exercise would help, but

most can't exercise too much. If you could do any small amount of

weight lifting type exercises -- even for 5-10 minutes -- that might

help speed up your metabolism and help you lose weight.

Just keep in mind this is coming from someone 20lbs UNDERWEIGHT.

Dan

> Marcia, I think you are really onto something important here! I

just wish

> there were some way we could get more serious attention given to

this weight

> situation.

>

> During the first six or seven years after diagnosis of CFIDS, I

kept getting

> thinner and thinner (friends were beginning to comment and whisper

comments

> about anorexia and bulimia. I had been thin but very muscular and

very

> physically active before getting sick. When I got sick, I got no

exercise,

> but continued to eat as before, which was a fairly healthy diet.

Then I was

> severely injured in a car crash, had two major surgeries, and

started to

> gain weight. Since then, nothing stops the weight gain. I've

tried eating

> less than 10 grams of carbohydrates a day while at the same time

eating less

> than 1000 calories a day. I gained half a pound in two weeks doing

that, so

> I stopped. It was not easy to do, and it had the reverse effect to

what I

> wanted.

>

> How many of us are there who are experiencing this? And is there

anything

> we can do about it?

>

> Wishing everyone the best,

>

> Re: No appetite - who else?

>

>

> Hi:

>

> I have had just the opposite. Always want food, feel like nothing

> satisfies hunger, and gained 100 lbs in first year of illness.

>

> Teena

>

>

> This list is intended for patients to share personal experiences

with each

> other, not to give medical advice. If you are interested in any

treatment

> discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

Hi all,

I read somewhere that magnesium chloride helps stomach acid formation. Did

try it. And yes,I think it does. My digestion got little better with it.My

dosage is low now. Planning to increase it.

best wishes.

Nil

[Guest guest]

Sorry, Katrien. I have no idea. I eat regular meals

and slump badly if I miss one or eat the " wrong

things " .

However, I do notice that carbs for the first meal and

protein for the rest of the day is the best combo for

me (energy-wise).

I have low stomach acid and take betaine HCL.

With warmest regards,

Annette

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