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I had restless leg syndrome too, and my doctor put me on Neurontin for it.

And it works! But the Neurontin doesn't seem to work for the nerve pain, the

other reason he put me on it. He also recommends a multi-B vitamin and IM

magnesium. The magnesium really helps the brain, and most importantly, our

muscle twitches, which don't hurt, but drives me crazy. Hope this helps.

Louise - also my doctor says not to take calcium and magnesium together. He

recommends taking the magnesium (oral) in the morning, and calcium at night.

I forget why, but I know the calcium kills my stomach and the mag doesn't.

Vicki, Md

> From: weezie@...

> Subject: Re: Muscle twitches

>

>

I twitch in my legs and arms throughout the

> day, but

> > mostly at night.

> > I know the leg part is called Restless leg syndrome, but what about

> the arms?

> > Is there anything that helps reduce this? I find it hard to

> sleep. Just as

>

> Hi I have been told to try calcium/magnesium , from what I understand

> is a defeciatey (oh well cant spell) lack of magnesium, Going to get

> some myself having same problems. hope it works

>

> Louise

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Hi Vicki & Phishmom,

I HAD Restless Legs Syndrome for at least 12 years, before I knew it was

secondary to Lyme.

At first it was controlled by Vitamin E, but that didn't work for more than 2

years.

Then I had to add all kinds of stuff, mostly Klonopin.

I was totally dependent on Klonopin to relieve the torture of Restless Legs,

which for me overpowered even the strongest sleeping pill, & severely

deprived me of sleep.

Even so, if I forgot the Klonopin for even one nite, I had horrid leg

attacks, just as I was falling asleep.

By the way, Phish, Restless Legs Syndrome can apply to the arms too.

Some people who have Restless Legs (RLS) also have PLMS, which I believe =

Periodic Leg Movements in Sleep.

Some have both, some have only one.

I thought I would be totally dependent on Klonipin or Mirapex or Neurontin or

equivalent for the rest of my life,

BUT

by day #4 on intravenous Rocephin, my Fibro disappeared (except when Herxing,

but not as bad) & so did the leg attacks.

I gradually cut back on the Klonopin each week, & now I am off it entirely,

and have not had one single torture leg-attack, not even a twinge.

I dread what will happen/ may happen when I someday have to stop the

Rocephin, but for now it is totally under control.

I never would have believed an antibiotic could help so much, for muscles!!!

I still have many other problems, but thought I'd share the good news about

the muscles & legs. It's a nice start.

Hugs to this wonderful group,

a Aida from NJ

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Hi Everybody,

I wanted to comment on something Vicki said. " neurontin didn't help with

nerve pain. " I went to 3 " pain management " doctors who really did not help me

although I was suicidal. One kept saying. " the neurontin SHOULD work. " Well,

it didn't. Not alone anyway. For 3 years now I have been on oxycontin, a time

released pain med. I am perfectly lucid and have no side effects (some

constipation which is easily helped) It is an opiate but only a tiny amount

is released into my bloodstream over many hours. After Lyme my biggest

passion is pain management. There are so many misconceptions about it. Today

they know that if a person is just taking the pain med to cover pain there is

very little chance of addiction. I see my pain MD every few months and she is

the most informed and wonderful MD I have ever met. She is the director of a

large team of neurologists and she specializes in neurologic pain relief. Of

course I'd have to taper off slowly but that is not a problem. I have no

desire to take pain meds. I just want to cover my nerve pain. I get no " high "

or anything of the sort from taking it. I feel so sorry for so many of you

who have pain. I know you do not have to live with it. I pray that you find

relief with a caring specialist in the pain management field. My pain is

better in general but still there to a degree that it interferes with daily

living. With herxes it rears its ugly head with a vengeance. Sorry so long

but I am into my 3rd week of 3000mg flagyl/day. I am really suffering. All I

do is sleep. No driving, no energy, fog, pain and such severe fatigue. I am

almost finished (21 day treatment) Wow, either I have trillions of bugs left

or I am a permanent zombie. I am also on IV Claforan to kill the chetes that

come out of the cysts.

Love,

Helen

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In a message dated 6/22/00 9:01:17 AM Eastern Daylight Time, Liveitup2@...

writes:

<< I am into my 3rd week of 3000mg flagyl/day. I am really suffering. All I

do is sleep. No driving, no energy, fog, pain and such severe fatigue. I am

almost finished (21 day treatment) Wow, either I have trillions of bugs left

or I am a permanent zombie. I am also on IV Claforan to kill the chetes that

come out of the cysts. >>

WOW Helen !!! God Bless you !!! I can't imagine 3000 mgs of flagyl a day ,let

alone with IV claph ! Its no wonder y

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  • 7 months later...

Is this where your legs feel like they just want to freak out? It is

hard to explain...but i have had this feeling...right around my knee

area..near the reflexes..and when i sat...i just had to keep moving

my legs around because i thought i would go crazy from the

feeling...it didn't hurt or anything...just drove me batty..is this

what this is? Because i try to explain it to people and i never could

do it very well..It doesn't wake me up at night tho. Take care

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Jenn, It is very hard to explain, its not really pain, but you cant sit,

you cant stand and you want to move but that doesnt work either! *-) I

was put on Neurontin for this, but only after it had kept me up for months

on end. The Neurontin has helped 99%, wish I had gone on it alot earlier.

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<<Because i try to explain it to people and i never could do it very

well..It doesn't wake me up at night tho>>

Are you sure it doesn't wake you up at night.........I didn't know mine was

either, until I had a sleep study.

If your legs are moving like this during the night, it could be disturbing

your sleep too..........do you wake exhausted?? Connie

Leave no stone unturned.......

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  • 4 weeks later...

In a message dated 2/5/2001 8:58:11 AM Eastern Standard Time, jenne3@... writes:

Is this where your legs feel like they just want to freak out? It is hard to explain...but i have had this feeling...right around my knee area..near the reflexes..and when i sat...i just had to keep moving my legs around because i thought i would go crazy from the feeling...it didn't hurt or anything...just drove me batty..is this what this is? Because i try to explain it to people and i never could do it very well..It doesn't wake me up at night tho. Take care

Dear Jenn,

Well, maybe we have "related strains" of Lyme disease.

Just kidding, but again, I have, rather, had, the same stuff, with just slight variations.

Yours is around your knees, whereas mine is my whole legs, but even my pelvis is affected. It is absolutely impossible to hold still when this feeling comes over. I used to describe it (long before ever hearing the term Restless Legs Syndrome) as a "creepy, crawly, feeling, like an internal itch that cannot be scratched, torture without pain."

Sometimes it felt somewhat like worms or bugs crawling up & down my legs inside, couldn't decide whether it was circulatory, nerves, muscles, or bone, maybe all of these.

Anyway, mine would hit me ONLY when I was exhausted & just about to fall asleep, making sleep absolutely impossible.

Of course, meds do treat it well, but without the meds, it was still there.

But when I started my first IV antibiotic, within 4 days, all restless legs symptoms were gone.

Personally, I believe RLS to be a symptom of Lyme, one of many.

By the way, almost a month has passed since you posted this, so I'm interested in knowing how your RLS is doing now.

Hugs,

a Aida/ NJ

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  • 2 years later...

I have had that problem. I can tell you one thing that causes it: Sominex

(diphenhydramine), a night-time sleep aid.

I had had RLS in the past while not using diphenhydramine, but it was mild

and it went away. Later, I was going through a period where I couldn't

sleep at night, so I started taking diphenhydramine before bed. Well, my

RLS came back IMMEDIATELY and was much worse! At first I didn't know it

was the diphenhydramine and I was going crazy. Finally I decided to stop

taking it on the possibility that it was causing the RLS. Sure enough, the

RLS went away!

Diphenhydramine is a systemic antihistamine. Other types of systemic

antihistamines are Claritin, Dimetapp, Unisom, Nytol, Benadryl -- there

are alot. Find out if there is something you are taking which is in this

category. Try not taking it for awhile if you can, and see if it helps.

Also, being in good walking shape helps... i.e. getting more regular leg

exercise on a daily basis, and having more endurance and stamina, seems to

have made my RLS go away. I am in much better shape now than I was before,

and I can even take diphenhydramine on occasion now without it causing the

RLS.

Good luck.

Bradford

Information Services Director, LPA, Inc.

Home: (503) 203-1043

Cell: (503) 341-9519

On Wed, 20 Aug 2003, Davies wrote:

> Hi list,

>

> I wanted to know how many people on the list

> experience

> restless leg syndrome, that irritating urge to twitch

> and kick your legs and feet in the late evening or at

> bedtime.

>

> If you do experience this annoying syndrome, what do

> you do to relieve it and have you found out what

> causes it? I used to think that, in my case, it was

> caused by too much exertion during the day or too much

> caffiene, but lately the symptoms have been so

> frequent and random, that I can't figure out what is

> causing it. A full moon maybe?!?!? Arggh!Sometimes I

> try standing or walking it off but at 12;00 at night

> that is not always practical.

>

>

> I have achondroplasia and have had all of the back

> problems (kyphosis, stenosis, etc, etc) but no one has

> ever made a connection.

>

> Any feedback or ideas on how to relieve or manage the

> symptons would be greatly appreciated!

>

> Thanks,

>

>

>

>

>

>

>

>

>

>

> ______________________________________________________________________

> Post your free ad now! http://personals..ca

>

>

> ===

>

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,

I have just had a serious of sleep studies done for sleep apnea. One of

the things they monitored was restless sleep syndrome. The two of them

are related. When I slept with the CPap machine the incidences of leg

movement were less.

Marge

On Wed, 20 Aug 2003 15:54:39 -0400 (EDT) Davies

<achondroplasia2002@...> writes:

> Hi list,

>

> I wanted to know how many people on the list

> experience

> restless leg syndrome, that irritating urge to twitch

> and kick your legs and feet in the late evening or at

> bedtime.

>

> If you do experience this annoying syndrome, what do

> you do to relieve it and have you found out what

> causes it? I used to think that, in my case, it was

> caused by too much exertion during the day or too much

> caffiene, but lately the symptoms have been so

> frequent and random, that I can't figure out what is

> causing it. A full moon maybe?!?!? Arggh!Sometimes I

> try standing or walking it off but at 12;00 at night

> that is not always practical.

>

>

> I have achondroplasia and have had all of the back

> problems (kyphosis, stenosis, etc, etc) but no one has

> ever made a connection.

>

> Any feedback or ideas on how to relieve or manage the

> symptons would be greatly appreciated!

>

> Thanks,

>

>

>

>

>

>

>

>

>

>

> ______________________________________________________________________

>

> Post your free ad now! http://personals..ca

>

>

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Hi ,

I am average stature but have this problem a lot. I also have lordosis and

scoliosis.

I get relief from heat or massage to the lower back. It seems to stop the

jumpiness long enough for me to get to sleep. It is interesting that Dave

linked this to antihistimine usage, as I am a user for allergies. The

connection has never been made for that with me, but now that he's mentioned

it, it is hopeless for me. :-) I have 2 cats and 2 dogs and a bird all of

which I am allergic to, but the pets stay. Guess I will just have to move

out:-)!

Willow

> Hi list,

>

> I wanted to know how many people on the list

> experience

> restless leg syndrome, that irritating urge to twitch

> and kick your legs and feet in the late evening or at

> bedtime.

>

> If you do experience this annoying syndrome, what do

> you do to relieve it and have you found out what

> causes it? I used to think that, in my case, it was

> caused by too much exertion during the day or too much

> caffiene, but lately the symptoms have been so

> frequent and random, that I can't figure out what is

> causing it. A full moon maybe?!?!? Arggh!Sometimes I

> try standing or walking it off but at 12;00 at night

> that is not always practical.

>

>

> I have achondroplasia and have had all of the back

> problems (kyphosis, stenosis, etc, etc) but no one has

> ever made a connection.

>

> Any feedback or ideas on how to relieve or manage the

> symptons would be greatly appreciated!

>

> Thanks,

>

>

>

>

>

>

>

>

>

>

> ______________________________________________________________________

> Post your free ad now! http://personals..ca

>

>

> ===

>

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Hi,

I have that restless leg problem myself (and I am not an LP). My daughter who

is an Achon has the problem as well. Mine has no explanation. My daughter sees

a Nuero surgeon who recently did a routine MRI to check the spinal stenosis

situation (which THANK GOODNESS has gotten no worse) but he did note something

very interesting that he feels explains her restless leg syndrome. She has a

'nerve thread' which he explained is totally fixable. It is a 'thread' of nerve

caught in the vertabre and is being pulled and stretched as she grows. He is

doing nothing about it now because it isn't a problem aside from the restless

leg syndrome. She's had enough surgery (once on her back for Kyphosis and

lordosis) so she and I (along with the DR) decided to leave it alone.

Maybe you should consult a Nuero DR for more info incase this is what is causing

your restless leg.

Good luck

Amy Spencer

Davies <achondroplasia2002@...> wrote:

Hi list,

I wanted to know how many people on the list

experience

restless leg syndrome, that irritating urge to twitch

and kick your legs and feet in the late evening or at

bedtime.

If you do experience this annoying syndrome, what do

you do to relieve it and have you found out what

causes it? I used to think that, in my case, it was

caused by too much exertion during the day or too much

caffiene, but lately the symptoms have been so

frequent and random, that I can't figure out what is

causing it. A full moon maybe?!?!? Arggh!Sometimes I

try standing or walking it off but at 12;00 at night

that is not always practical.

I have achondroplasia and have had all of the back

problems (kyphosis, stenosis, etc, etc) but no one has

ever made a connection.

Any feedback or ideas on how to relieve or manage the

symptons would be greatly appreciated!

Thanks,

______________________________________________________________________

Post your free ad now! http://personals..ca

===

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I too am achondroplasia, and was diagnosed with Restless Leg Syndrome about

five years ago. The doctor jokingly, but correctly called it " a sleep

disorder for two. "

At night, I take Mirapex, which has worked very well, allowing me to have a

restful sleep.

Although I have RLS symptoms every night, it is worse if I have been

inactive during the day. Since I travel by airplane quite a bit in my

business, sitting on a long flight can be particularly agravating. For

those situations, my doctor has prescribed Carbidopa/Levo which seems to

help for the occassional daytime episodes.

If you haven't already, I suggest you go to a Sleep Disorder Clinic. It was

a little wierd to sleep while being videotaped, with all sorts of probes and

wires attached to my body, but in my case, it made for a quick, definite,

diagnosis that led to the first sound sleep I experienced in decades.

Hope this helps. Good luck.

Steve Lee

Restless Leg Syndrome

Hi list,

I wanted to know how many people on the list

experience

restless leg syndrome, that irritating urge to twitch

and kick your legs and feet in the late evening or at

bedtime.

If you do experience this annoying syndrome, what do

you do to relieve it and have you found out what

causes it? I used to think that, in my case, it was

caused by too much exertion during the day or too much

caffiene, but lately the symptoms have been so

frequent and random, that I can't figure out what is

causing it. A full moon maybe?!?!? Arggh!Sometimes I

try standing or walking it off but at 12;00 at night

that is not always practical.

I have achondroplasia and have had all of the back

problems (kyphosis, stenosis, etc, etc) but no one has

ever made a connection.

Any feedback or ideas on how to relieve or manage the

symptons would be greatly appreciated!

Thanks,

______________________________________________________________________

Post your free ad now! http://personals..ca

===

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In a message dated 8/20/03 11:25:45 PM Eastern Daylight Time,

socolee@... writes:

> I have achondroplasia and have had all of the back

> problems (kyphosis, stenosis, etc, etc) but no one has

> ever made a connection.

>

> Any feedback or ideas on how to relieve or manage the

> symptons would be greatly appreciated!

>

> Thanks,

>

>

>

>

>

>

>

>

>

>

>

>

,

Sometimes my leg will twitch in the middle of the night. It's usually my

left leg. I love to sleep on my stomach or side and when I'm hunched up like a

cocoon I wake up with a very bad pain in my thigh which feels like stabbing and

have to lie awake waiting to then lay straight and for it to go away.

Helen

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On Wed, 20 Aug 2003, Marjorie E. Carlisle wrote:

> I have just had a serious of sleep studies done for sleep apnea. One of

> the things they monitored was restless sleep syndrome. The two of them

> are related. When I slept with the CPap machine the incidences of leg

> movement were less.

Someone correct me if I'm wrong, but I don't think Restless Sleep

Syndrome, or the leg movements that occur during sleep apnea are related

to Restless Leg Syndrome.

Restless Leg Syndrome is very hard to explain to someone who has never had

it. I think it is caused by some as-yet undiscovered chemical imbalance in

the central nervous system. It is a very bizarre sensation which emanates

from the legs (sometimes the arms too, in some people), most often arising

right after you get in bed. When you are lying there motionless, your legs

quickly develop a virtually unbearable feeling which is not pain, not

itching, not numbness, not tingling, not anything that can be easily

described with words. The closest description I can think of is " an

irresistable urge to move your legs " . It keeps you wide friggin' awake!

And in fact, causes most people who have it to get out of bed and walk

around just so they don't go nuts from the sensation.

Sounds weird, I know! But it's a real problem. I'm glad it's gone away for

me.

-Dave

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> Dave, you are correct about the restless leg syndrome being a chemical

> imbalance. I do have it, and I take the medication for it periodically.

> The best advice my doctors have given me is to take a good amount of the

> vitamins your body is in need of, and keep the fluid up, especially

> during the hot months, because the RLS will tend to be worse. -Debi

> Hoggan, mom to Mandy

Good lord, Debbie, what disease don't you have? Maybe you should see a

psychiatrist instead of a physician.

-Dave

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Dave, you are correct. The leg movements (more aptly described as a sudden,

violent, knee jerk) related to sleep apnea are different than RLS. According

to my ENT, the apnea jerks result from your body's attempt to wake you up, an

alarm if you will. Your body knows it is choking, so it causes a leg to kick

violently. I, having apnea myself, have kicked hard enough to disolate my

knee (which is an extremely unpleasant way to wake up, by the way).

Unlike RLS, the apnea jerk occurs once, and then not again until you start

falling back to sleep. A CPAP will alleviate this problem.

-Bill

(who can boot a 90-yard punt in his sleep)

> On Wed, 20 Aug 2003, Marjorie E. Carlisle wrote:

>

> > I have just had a serious of sleep studies done for sleep apnea. One of

> > the things they monitored was restless sleep syndrome. The two of them

> > are related. When I slept with the CPap machine the incidences of leg

> > movement were less.

>

> Someone correct me if I'm wrong, but I don't think Restless Sleep

> Syndrome, or the leg movements that occur during sleep apnea are related

> to Restless Leg Syndrome.

>

> Restless Leg Syndrome is very hard to explain to someone who has never had

> it. I think it is caused by some as-yet undiscovered chemical imbalance in

> the central nervous system. It is a very bizarre sensation which emanates

> from the legs (sometimes the arms too, in some people), most often arising

> right after you get in bed. When you are lying there motionless, your legs

> quickly develop a virtually unbearable feeling which is not pain, not

> itching, not numbness, not tingling, not anything that can be easily

> described with words. The closest description I can think of is " an

> irresistable urge to move your legs " . It keeps you wide friggin' awake!

> And in fact, causes most people who have it to get out of bed and walk

> around just so they don't go nuts from the sensation.

>

> Sounds weird, I know! But it's a real problem. I'm glad it's gone away for

> me.

>

> -Dave

>

>

>

> ===

>

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  • 1 year later...

In a message dated 12/6/2004 8:01:16 PM Eastern Standard Time,

writes:

RLS is traditionally caused by an iron shortage / low ferritin level in the

brain. For RLS, your ferritin level should be above 50 - mine was below 6

when I was finally diagnosed properly 4 years ago. Good luck...Tom

====

HELLO, glad you mentioned that to him tom, as I was going to.... I also had

RLS and also found out I had almost zero iron and B12.... which also caused

many other horrible symptoms, such as fatigue and shortness of breath and

pain.... anyway, it does improve with iron / B12 replacement.... SO to all

wiht

RLS be sure to make doc run your iron and b12 levels..... best to all...

celia

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  • 9 months later...

I'm like Joanie on this one, no experience and amazed by the knowledge

I'm picking up here. I do have some questions for those who,

unfortunately, have the experience to educate the rest of us.

I see a product advertised - the commercials were my first clue RLS

existed. Is this one of the drugs you've described? What's the first

symptom you remember experiencing? My mom has some weird thing going

on with her feet and legs, but her doc didn't mention this.

Her diagnosis was a little strange, but I'm starting to think he was

right. He told her to quit going barefoot, because she was building up

too much static electricity and effecting the nerves in her lower

extremities. As she was in the habit of dancing 30 minutes (she's 76)

daily for exercise, barefoot on the carpeted living room floor, it

sounded reasoable. Putting shoes on has made a big difference, but she

still has what she calls " weird jumpies. "

Now I'm wondering if she may be experiencing early symptoms of RLS?

I'm amazed by the wealth of knowledge on anything and everything by

the collective minds of MGBLand. Tj

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  • 4 weeks later...

Zinc sure worked well, like immediately. We will see if it holds.

is Rotella

>

> I've had a revving in my right foot/ankle/leg for a few months, after

> th heavy metal stuff started. It stopped for a while but has started

> back up, not just when I'm trying to fall asleep but several times

> during the day. It's most unpleasant and just won't quit. is

Rotella

>

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Hi : I've been on many meds. We tried Neurontin. It did nothing. I had

Requip which worked for a while and then quit working.I forget the names of

all the others we tried. I have now been on Mirapex for a year and a half

and it works. If I forget to take it, I'm miserable. I have restless legs a

lot during the day if I forget meds. If I keep moving I'm fine, if I sit

down to work on the computer, etc. it starts. With Mirapex, although it

makes me sleepy sometimes, it is truly bearable. I go to a neurologist and

he prescribes it. I have cut my dose in half and still get relief and am

not as sleepy.

I take .25 at bed time and 1/2 in the morning and afternoon. I can take up

to three tablets daily but don't generally need that much.

I hope this helps. Believe me, pacing and getting no sleep is very wearing.

Mirapex has been the answer for me. It's not perfect and at times I still

get it but the episodes are few and far between now.

Flo

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  • 2 weeks later...

Hi is, I have heard that ribose helps with restless leg syndrome. Worth

a try. Good Wishes. O'Lone

Re: restless leg syndrome

Zinc sure worked well, like immediately. We will see if it holds.

is Rotella

>

> I've had a revving in my right foot/ankle/leg for a few months, after

> th heavy metal stuff started. It stopped for a while but has started

> back up, not just when I'm trying to fall asleep but several times

> during the day. It's most unpleasant and just won't quit. is

Rotella

>

.............................................

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Try 1 pill Zincum metallicum 200 (Homeopathic).

>From: " O'Lone " <steph@...>

>Reply-qxci-english

><qxci-english >

>Subject: RE: Re: restless leg syndrome

>Date: Mon, 31 Oct 2005 18:02:05 -0800

>

>Hi is, I have heard that ribose helps with restless leg syndrome.

>Worth

>a try. Good Wishes. O'Lone

>

> Re: restless leg syndrome

>

>Zinc sure worked well, like immediately. We will see if it holds.

>

>is Rotella

> >

> > I've had a revving in my right foot/ankle/leg for a few months, after

> > th heavy metal stuff started. It stopped for a while but has started

> > back up, not just when I'm trying to fall asleep but several times

> > during the day. It's most unpleasant and just won't quit. is

>Rotella

> >

>

>

>

>

>

>

>

>

>

>............................................

>

>

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> >

> > I've had a revving in my right foot/ankle/leg for a few months,

after

> > th heavy metal stuff started. It stopped for a while but has

started

> > back up, not just when I'm trying to fall asleep but several

times

> > during the day. It's most unpleasant and just won't quit.

is

> Rotella

> >

>

>

>

>

>

>

>

>

>

> ............................................

>

>

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Address sugar, dairy elimination, eat organic.

Check parasites and toxic metal load.

B vitamins may helps with folic acid and B 12

EFA from fish oils

Niacin flushing may help. Use at night

Magnesium with other minerals

Stop eating sugar.

Try using Natural Cellular Defense by Waiora for Toxic metal load and

viruses.

Re: restless leg syndrome

> >

> > I've had a revving in my right foot/ankle/leg for a few months,

after

> > th heavy metal stuff started. It stopped for a while but has

started

> > back up, not just when I'm trying to fall asleep but several

times

> > during the day. It's most unpleasant and just won't quit.

is

> Rotella

> >

>

>

>

>

>

>

>

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> ............................................

>

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