Re: 6 months on LDN==and a little nervous....

[Guest guest]

Dr RLS,

Wouldn't the LDN and percocet interfere w/each other? Thanks for the info!

Marcie (PPMS)

In a message dated 7/23/2004 6:26:30 PM Central Standard Time, ursae@... writes:

MS can be treated by low dose oxycodone (like percocet) and/or Vitamin E 400-800 iu/

[Guest guest]

Hi Pam, " restless leg syndrome " also known as " myoclonus " apart from the

symptoms of MS can be treated by low dose oxycodone (like percocet)

and/or Vitamin E 400-800 iu/day. A person with MS and all people should

be taking supplements which include a potent multi, additional B

complex, 50 mg. of each, minium, 1 gram Vit C per day with

bioflavinoids, and numerous antioxidants, such as grape seed extract,

alpha lipoic acid, L-Glutathione, and Acetyl L-Carnitine. Good Luck,

Dr. RLS

[Guest guest]

Pam,

Was the 30 mg a misprint? If not, how did you come to be on such a high dose, if you don't mind me asking. Hearing these types of stories really concerns me as LDN is my last hope.

Marcie (PPMS)

In a message dated 7/24/2004 11:45:23 AM Central Standard Time, prsklak@... writes:

More than the spasms and pain, or jerking, I am really nervous about the amount of LDN I am taking, as the 30mg that had helped so much,

[Guest guest]

what you are d4escribing is exactly what I found happening and so when stretching was only a very temporary solution,I opted for Baclofen too.

My Nuerologist started me out far too heavy for me at 40 mgs a day so I have stopped taking it for now.

What amount Of bac.do you take and is it working for you?

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 07/23/04 15:42:16

low dose naltrexone

Subject: [low dose naltrexone] 6 months on LDN==and a little nervous....

Hey guys,I've been lurking around, but not posting much during the passt month or two.I began LDN on Feb. 15, and it immediately started helping my balance, bladder control, and skin sensations. I had never really had what everyone else was talking about with "stiffness" as a side effect.About three to four weeks ago, I began that "stiffness", although I almost feel as though my muscles were actually in a spasm in my legs. The pain has been really bad, and I find that in order to walk any distance with the "stiffness", I must resort to Baclofen, once again. I am also experiencing "jerking" of muscles in my legs, which usually only happens during the night while sleeping---it's so bad some nights, that I either can't get to sleep, or am woken up by it. I do find that half of a xanex stops the jerking, but the next day both legs just throb.I have tried switching doses; I began in Feb. on 3mg, and then jumped to about 4 ( I am not actually measuring it--) once the jerking started, I remained on 3mg....but during the past month the jerking has returned, and no matter how much I drop down to (I've even gone for 2mg) and still had the same response. I still have better balance, and still have less fatigue and better bladder control, but for the rest feel somewhat the same as before LDN...this scares me, and really makes me wonder what I should do.I also have gotten this "jerking" or sort of busy leg syndrome in the past from taking different anti-depressants....I have stuck with half a dose of Effexor, and that seems to stop the jumping.Anyone got any ideas or suggestions? I won't give up the LDN, with the other positive things that have happened from it, but was just wondering if anyone had any ideas?Pamprsklak@...

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi Reg,

Reg, I am taking 10 mg of Baclofen when I take it; for the most part

I only use Baclofen during the day, when my muscles " hurt " ; I take it

with a few Ibuprofen or Aleve and that does help to allow me to stay

on my feet a little longer without as much pain.

At night for the leg jerking, I have been taking .25 of xanex.

More than the spasms and pain, or jerking, I am really nervous about

the amount of LDN I am taking, as the 30mg that had helped so much,

seems to be helping less and less. My balance isn't as good as it

was, and the pain and spasms worse than when I startred LDN. I have

tried skipping a day or two, but when I resume LDN, it seems to go

directly back to where I was when I stopped it....I won't stop it, as

long as it keeps exacerbations away, but the hope and excitement that

I had in the beginning has become much more pessimistic.

Pam

prsklak@...

[Guest guest]

Whats wrong with this picture?

Dr Bahari and Dr.Lawrence both say that you should never receive any benefit from an amount over 6.0mgs! yet you say you got great results from 30 mgs? Five times the highest amount you should ever get.

I am going to try to cut my pills in quarters and take 5.0mgs in the morn and night then work up from there.Thankyou that helps confirm that even with Baclofen less is better.

Where is your pain? Mine is in my knees, and since I fell down yesterday it is in my neck now too.I got a piece of paper under my cane and it acts like snot on the floor.

good luck but cut back on the ldn huh?

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 07/24/04 11:44:59

low dose naltrexone

Subject: [low dose naltrexone] Re: 6 months on LDN==and a little nervous....

Hi Reg,Reg, I am taking 10 mg of Baclofen when I take it; for the most part I only use Baclofen during the day, when my muscles "hurt"; I take it with a few Ibuprofen or Aleve and that does help to allow me to stay on my feet a little longer without as much pain.At night for the leg jerking, I have been taking .25 of xanex.More than the spasms and pain, or jerking, I am really nervous about the amount of LDN I am taking, as the 30mg that had helped so much, seems to be helping less and less. My balance isn't as good as it was, and the pain and spasms worse than when I startred LDN. I have tried skipping a day or two, but when I resume LDN, it seems to go directly back to where I was when I stopped it....I won't stop it, as long as it keeps exacerbations away, but the hope and excitement that I had in the beginning has become much more pessimistic.Pamprsklak@...

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

>

>

> Hey guys,

>

> I've been lurking around, but not posting much during the passt month

> or two.

>

> I began LDN on Feb. 15, and it immediately started helping my

> balance, bladder control, and skin sensations. I had never really

> had what everyone else was talking about with " stiffness " as a side

> effect.

>

> About three to four weeks ago, I began that " stiffness " , although I

> almost feel as though my muscles were actually in a spasm in my

> legs. The pain has been really bad, and I find that in order to walk

> any distance with the " stiffness " , I must resort to Baclofen, once

> again.

>

> I am also experiencing " jerking " of muscles in my legs, which usually

> only happens during the night while sleeping---it's so bad some

> nights, that I either can't get to sleep, or am woken up by it. I do

> find that half of a xanex stops the jerking, but the next day both

> legs just throb.

>

> I have tried switching doses; I began in Feb. on 3mg, and then jumped

> to about 4 ( I am not actually measuring it--) once the jerking

> started, I remained on 3mg....but during the past month the jerking

> has returned, and no matter how much I drop down to (I've even gone

> for 2mg) and still had the same response.

>

> I still have better balance, and still have less fatigue and better

> bladder control, but for the rest feel somewhat the same as before

> LDN...this scares me, and really makes me wonder what I should do.

>

> I also have gotten this " jerking " or sort of busy leg syndrome in the

> past from taking different anti-depressants....I have stuck with half

> a dose of Effexor, and that seems to stop the jumping.

>

> Anyone got any ideas or suggestions? I won't give up the LDN, with

> the other positive things that have happened from it, but was just

> wondering if anyone had any ideas?

>

> Pam

>

> prsklak@c...

===================

The 30mg was a typographical error!!!! It should read 3.0mg. You can see in

Pam's original post she states she's used 3mg and upped to 4mg.

Pam have you recently started a new batch of LDN? If so, did your symptoms

start when you started the new batch of LDN? You may have a dud batch of LDN or

you may need to up your dose to 4.5mg or to 5.0mg or even up to 6.0mg. Dr.

Bihari has a few people on 6.0mg. What is your filler or do you mix your own?

For the stiffness you need to add Potassium, Magnesium, MSM(start at 1,000mg

twice a day and take it along with 500mg to 1,000mg twice a day of

Ester-C(Ester-C being buffered to protect stomach & helps the MSM absorb better)

after a week on 1,000mg of MSM twice per day, up your dose of MSM to 2,000mg

twice per day with 1,000mg of Ester-C twice per day for 1 week. Then up to

3,000mg of MSM 2x's per day and add 1,500mg or 2,000mg of Ester-C twice per day.

The MSM will make you more flexible. If you need more MSM then up the dose,

I've taken up to 8,000mg 2x's per day of MSM. But don't start out on that high

of a dose.

[Guest guest]

I'm sorry! Didn't mean to say 30, but 3mg...guess my little finger

got stuck on zero.

Pam

[Guest guest]

Vitamin E, 400-800 IU/day is a well know treatment for nocturnal

myoclonus, or restless leg syndrome.