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Hello All

IM Jane. Mom to 14 months and 2 1/2. had Milk

and Soy protein intolerance as a baby and screamed 24/7 we thought she was bad

till Ben came. He had milk and soy intolerance so bad he was on TPN for

months and it affected his liver function. He is still G-tube fed most of his

calories, but does fair with some baby foods. He is on PeptaminJR.,

currently. I am not sure Hess tolerating it to well.

Ben is very suceptable to infection and gets sick about every time he goes

out. He is on the Medicaid waiver aged and disabled. We get 16 respit care

hours a week.

My time is up. Glad to join such a great bunch of people.

Jane

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Jane,

Welcome and I hope you find we can be of some help and comfort.

Traci

Mom to Luke EG (6yrs) and (9yrs)

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In a message dated 98-08-17 11:30:44 EDT, you write:

<< He is on PeptaminJR.,

currently. I am not sure Hess tolerating it to well. >>

Just a short note that peptaminJr. does contain whey - actually enzymatically

hydrolyzed whey protein - which is a milk product - this may be why he is not

doing great. It also contains soy oil. Maybe you should ask about trying

either neocate 1+ or vivenex pediatric.

love,

sharon

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Hi Kate, a big wellcome.I am on Prozac, and I have bad rls, so I tried 8 weeks

without

Prozac, because it might increase the symptoms.Everything was the same as far as

the rls

was concerned, so in my case Prozac could be taken again, and that was good, my

life

without Prozac was hell, and with it I feel just fine, not manic( the first 2

weeks I was

manicish),just fine.

the other meds I have no experience with, on Sinemet now, but it is wearing

out..Marleen,

52,Holland

Kate Fitzgerald wrote:

>

>

> Hi everyone, this is my first day on the list. I have had rls since I was a

kid, but

> just realized recently how much it interferes with my sleep. My doctor

> prescribed Sinemet and it worked like a miracle drug at first, then I suffered

the

> augmentation effect and the Sinemet only works for an hour or two at night.

>

> I left a message for my doctor and he called in a new prescription for me,

> Amitriptylene (not sure of spelling). His nurse called and told me I could go

pick

> it up, but I'm very leery of this drug and I don't think I want to even try

it. For one

> thing, a doctor put me on Prozac after my divorce and it made me manic. The

> same thing happened with Wellbutrin. Well, I've finally paid off all the debts

I

> incurred while manic, so I don't want to take a chance on another

> antidepressant. I called the nurse back and told her about my misgivings, but

I

> haven't heard back from my doctor or his nurse. And the other thing is that

I've

> heard this drug actually makes RLS worse!

>

> I would like to try Permax, since the dopamine helped for awhile at least. I

> know it is expensive, so maybe my insurance company won't let him prescribe

> it, I don't know. I also read an article about a nutritional supplement, NADH,

> that supposedly stimulates your natural production of dopamine. Has anyone

> tried this or heard about it?

>

> Also, I took L-tryptophan when it was legal, and I was symptom free for

several

> years. I know you can't buy it over the counter, but can I get a prescription

for

> it? It worked so well.

>

> Thanks for being here, I'm looking forward to getting to know you all.

>

> Kate

>

> ------------------------------------------------------------------------

>

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Thanks for your response Maureen. I know that antidepressants are wonderful

for people who have the actual illness, of depression, but I just don't think

that's

my problem. I had many other health problems while on Prozac and Wellbutrin,

including severe headaches and excessive menstral bleeding (while on Prozac,

I had non-stop bleeding for 3 months, but I was too " happy " to care). I now

think that I've never had the illness of depression, because anti-depressants

messed me up so badly. And I'm not unhappy, I never had symptoms of

unhappiness. I just get very tired and confused, I suspect it's because RLS

keeps me from getting enough deep sleep. I hope I can find soething that helps.

Kathleen R. Fitzgerald

University of Minnesota Extension Service

Professional Education and Conference Planning

405 Coffey Hall

1420 Eckles Avenue

St. , MN 55108

1-

" Courage is the price that life exacts for granting peace. "

-- Amelia Earhart

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Hi Kate

Welcome to the group. You came to the right place.

Amitryptiline (Elavil and others) is a tricyclic antidepressant and has

a bad reputation in RLS patients, as do most antidepressants of any

type. If they are needed for treating clinical depression, that's one

thing, but their use to treat RLS is frequently diastrous. As an aside,

you mentioned Wellbutrin. For those who don't realize it, the currently

heavily advertised smoking cessation aid, Zyban, is the same as

Wellbutrin. It is fraught with side effects for RLS and non-RLS

patients. It is a mystery to me how the FDA could approve a drug with

such a rotten track record for use as an aid for cessation of smoking.

I think you are wise to resist taking the Elavil.

Tryptophan is not available OTC or on Rx in the U.S. There is a drug

company on the Web that claims that if the Rx is written so that

compounding by the pharmacist is required, e.g. making capsules or

mixing with another substance, then the FDA does not have jurisdiction.

It claims that its trytophan is free of the contaminant that caused it

to be withdrawn by the FDA. It also sells veterinary products including

trytophan. Personally, I wouldn't touch it.

NADH is another naturally occurring substance in the body that the

commercial drug houses have latched onto, in my opinion, to make money.

I know of no creditable evidence that NADH significantly elevates

dopamine in the central nervous system. It is related to Vitamin B3,

niacin, and deficiencies of B3 are very rare in non-alcoholics who eat a

healthy diet. It is touted as a treatment for Parkinson's disease. Until

some acceptable evidence of its efficacy is produced, I think it is a

waste of money. It probably will not hurt you.

Instead of Permax, may I suggest Mirapex, which is also a

dopamine-active drug, but which has fewer side effects than Permax. It

is marginally less expensive. I don't want to believe that a reputable

insurance company would refuse to agree to its use. There are many more

expensive drugs out there that are approved by insurance companies every

day.

Dr. Levin

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Thanks for your response Dr. Levin., may I print your letter and show it to my

doctor? He is a good doctor and a good person, I don't think he would be

offended. He has been a bit frustrated with overload at his current clinic, so

he

has tried to handle problems over the phone where possible. I appreciate his

willingness to do this, but this time it's not going to work out. I just think

it

would be a bad idea for me to take Elavil, so I won't.

Kathleen R. Fitzgerald

University of Minnesota Extension Service

Professional Education and Conference Planning

405 Coffey Hall

1420 Eckles Avenue

St. , MN 55108

1-

" Courage is the price that life exacts for granting peace. "

-- Amelia Earhart

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Kate:

Another thing I learned thru all this trial and error medicine thing is

to always ask for samples of medicines from your doctor. This way you

can test a drug before having to pay a lot of money for something that

ends up in the trash. Also, if I get a prescription for a drug that I

have not taken before and the doctor gives me a prescription to 30

tablets, I have the pharmacist give me only enough for a week or less.

I pay less and get to test the drug before committing my life savings.

It has taken me 45 years to figure this out. Thought I would pass it

on.

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Pam, my doctor is usually good about giving samples, but he is so swamped

that I rarely get in to see him. He ends up prescribing over the phone through

his nurses, so I never even talk to him much less see him. I agree, that is the

best way to try new meds. I once had a doc give me a sampler of several

different allergy meds to try and told me to pic the one I liked best and he

would write a prescription. I thought that was fantastic!

As far as cost, though, they all cost me $9. Insurance picks up the difference.

Kathleen R. Fitzgerald

University of Minnesota Extension Service

Professional Education and Conference Planning

405 Coffey Hall

1420 Eckles Avenue

St. , MN 55108

1-

" Courage is the price that life exacts for granting peace. "

-- Amelia Earhart

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In a message dated 11/16/98 9:39:53 AM Eastern Standard Time,

kfitzgerald@... writes:

<<

>>

Yo, Kate,

I don't know about anyone else in the group but those amytriptilines(sp) made

my RLS/PLMS worse. Keep a close watch.

Ed-Cyberphilly

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> Yo, Kate,

Thanks for the feedback Ed-Cyberphilly, your experience seems to be the

norm. I'm opting not to take the elavil.

> I don't know about anyone else in the group but those amytriptilines(sp) made

> my RLS/PLMS worse. Keep a close watch.

>

> Ed-Cyberphilly

Kathleen R. Fitzgerald

University of Minnesota Extension Service

Professional Education and Conference Planning

405 Coffey Hall

1420 Eckles Avenue

St. , MN 55108

1-

" Courage is the price that life exacts for granting peace. "

-- Amelia Earhart

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Tricyclics like Elavil, may increase PLMs and possibly RLs symptoms.

I'd think changing the dose or schedule of sinemet is one way to go or

using another dopaminergic medication like permax Dr. Levin any comments

Pamela

>

>

> Hi everyone, this is my first day on the list. I have had rls since I was a

kid, but

> just realized recently how much it interferes with my sleep. My doctor

> prescribed Sinemet and it worked like a miracle drug at first, then I suffered

the

> augmentation effect and the Sinemet only works for an hour or two at night.

>

> I left a message for my doctor and he called in a new prescription for me,

> Amitriptylene (not sure of spelling). His nurse called and told me I could go

pick

> it up, but I'm very leery of this drug and I don't think I want to even try

it. For one

> thing, a doctor put me on Prozac after my divorce and it made me manic. The

> same thing happened with Wellbutrin. Well, I've finally paid off all the debts

I

> incurred while manic, so I don't want to take a chance on another

> antidepressant. I called the nurse back and told her about my misgivings, but

I

> haven't heard back from my doctor or his nurse. And the other thing is that

I've

> heard this drug actually makes RLS worse!

>

> I would like to try Permax, since the dopamine helped for awhile at least. I

> know it is expensive, so maybe my insurance company won't let him prescribe

> it, I don't know. I also read an article about a nutritional supplement, NADH,

> that supposedly stimulates your natural production of dopamine. Has anyone

> tried this or heard about it?

>

> Also, I took L-tryptophan when it was legal, and I was symptom free for

several

> years. I know you can't buy it over the counter, but can I get a prescription

for

> it? It worked so well.

>

> Thanks for being here, I'm looking forward to getting to know you all.

>

> Kate

>

> ------------------------------------------------------------------------

>

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/// Steve,,,I think Marina is trying to say ....Are you single ?????????? ///

Hey Steve,

First think you have to learn about this list: DON'T BELIEVE EVERYTHING THAT

IS SAID !!!

LOL

PS: Thank you ! Grrrrrrrrrrrrrrrrrrrrrrr

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Thanks for the copliment

--- karinc karinc@...> wrote:

> Sue,

> I am only on your list for about a week.

> I have been on the net for about 4 yrs now and I

> belong to newsgroups and a

> few email groups and I have to tell you how nice

> this group is. You run a

> nice list and I just wanted to reinforce this. I am

> learning and I am

> abstinent from Carbos....

> , Jax. Florida

>

>

>

>

------------------------------------------------------------------------

> Forget the rest We are the best. BIG AND BEAUTIFUL

> BUT LOSING!!!!!!

>

>

=====

:) Sue List Manager 310/260.5/180

Goal for Challenge 2 250

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In a message dated 10/7/99 2:25:26 AM Eastern Daylight Time,

HELLRAAZR@... writes:

<<

Peace in Him

Kem >>

Hello and welcome to the list, Kem!!!

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Hi Kem

Don't know anything about those drugs you mentioned but wanted to welcome you

anyway.

Bev in Selah

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In a message dated 10/22/1999 1:54:37 PM Eastern Daylight Time,

OGOofWa@... writes:

<< How low is

TOO low for your blood sugar to be? >>

Normal blood sugars should be between 70-120. Yours seem just great!!

Exactly where you want to be. It is not the sugar that helps keep your sugars

normal when your Hypo, it is just eating, anything. As a matter of fact Sugar

isn't at all what you should eat if your Hypo, Some hypo is a pre diabetic

stage. You need to get checked if you really think this is true. You will not

faint dead away, you will have symptoms, like cold sweats and a quiseyness in

your tummy, amoung other things. Don't worry about it, This WOL is for both

Hypo and Diabetes. I have Type II also and my levels have been in the norm

since a month after I started!! The best time to check for your sugar levels

is before each meal if they are normal then you are fine. Also CHecking for

Ketosis, check in the evenings is the best time. Animal fat is not going to

give you a stroke!! LOL You should be taking vitamins and you will start

feeling better at the end of the first week or even the beginning of the 2nd

week!! good luck in this way of life!!!

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

!!!!!!!!Go Braves!!!!!!!!!

List Co-Moderator---ICQ#51429926

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

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Oh Penny,

You have definitely helped to put my mind at ease..:)

I'm tellin ya, I am a major worry wart. I am a bit stressed because Ron (DH)

took his glucometer to work with him this a.m. (how DARE he...lol) and I have

no way of checking my sugar level. (worry worry worry)

To be truthful, my guess is that there is absolutely nothing medically wrong

with me as far as my blood sugars go..my problem lies with the fact that I

have poisoned my body for so long with low-fat/high carbo foods for such a

long time that it is simply going to take my body a little while to adjust.

My blood sugar was 91 when I woke up this morning before I ate anything at

all (which is normal?) so I think I can relax in the assertion that I am not

going to go into a coma by this evening. (I'm trying to convince myself

here, OK?)

BTW..I ate a chef's salad for lunch today, and I probably ate a little too

much romaine. I ate first, checked the carbo content afterwards and found

out there is 2 g. per 2 leaves. OOPS! :( I guess I better start double

checking before I eat. How long after I eat too many carbs will it throw me

out of ketosis if it's going to?

I must close this post by saying that I am sorry if I seem crabby these next

few days. (weeks? years?) I am in some major sugar withdrawal. The

strange thing is..although my body acts like it's in withdrawal, I have NO

desire to eat sugar. I am such a B**** that I have given my kids the last

few days off of school (we homeschool) because I have no patience at all and

I don't want to snap at them and hurt their little egos. (not saying that I

won't snap at them over their bedrooms being disgusting, I just won't snap at

them as far as their education is concerned)

Still hanging! (and hagging)

Shari

186/???/135ish

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Hi Shari, Hope this will be of some help. Normal sugar is 80 to 120

and I have been diabetic for a lot of years.. You are normal and be

thankful. Don't think you have anything to worry about. Wish mine were

that good. I take insulin twice a day. Good luck on this WOL. It will

get better. May take a couple more days. Just hang in there.

Martha

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,

Welcome. I posted my intro earlier today, hope you got it.

My suggestion for you, to help with milk supply, is from your post itself.

You said your son sleeps through the night and nurses 4-5 times per day.

You really need for him to nurse 6+ times per day to keep your supply up at

his current age.

The how-to: Get him up and feed him one more time at night, wake up earlier

and nurse one more time early in the morning, or both.

Beyond that, oatmeal, mother's milk tea, fenugreek, are other things to

increase your supply.

Also, between 4.5 to 6 months of age is the next expected growth spurt.

Glad to have you here,

Amy Lynn

mother to 1-25-98 and 2-10-00

Want great toys? Non-violent, educational, fun! check out

www.discoverytoysinc.com, or e-mail me privately for a catalog

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I meant to write BPD/DS (I'll get it figured out some day). :-)

Jacque

> Hi, my name is Jacque, and I have an appointment Oct. 27th for my

> initial consult with Dr. Sudan in Omaha, NE, for the BPD...

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I meant to write BPD/DS (I'll get it figured out some day). :-)

Jacque

> Hi, my name is Jacque, and I have an appointment Oct. 27th for my

> initial consult with Dr. Sudan in Omaha, NE, for the BPD...

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I meant to write BPD/DS (I'll get it figured out some day). :-)

Jacque

> Hi, my name is Jacque, and I have an appointment Oct. 27th for my

> initial consult with Dr. Sudan in Omaha, NE, for the BPD...

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