RE: Spastic legs and arms followup (getting worse)

June 20, 2005

In a message dated 6/20/2005 11:16:27 AM Central Daylight Time, nascush@... writes:

I started DL-PHENYLALANINE last week with no results

yet. I stopped Avonex before starting LDN and have

since started Copaxone also. If things do not improve

quickly; I will have to stop LDN and go back on Avonex

again. I do not want to go back on IV Steroids again

either.

I am open to suggestions and appreciate your advice, Steve

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

It doesn't sound as if you are RRMS. The CRABs supposedly only work for RRMS. I am Chronic PPMS. You name the symptom, I've got it. I haven't stood in 6 years. My stiffness is indescribable. I am on 4.5mg LDN. Not a miracle, but some slight improvement in bladder area. Maybe more energy. I was on Avonex to begin with. Didn't help me for sure.

Marcie

June 20, 2005

Hi Steve...how frustrating for you!! I started LDN about two weeks ago. I

have noticed an increase in muscle spasticity in my right leg. Also, entire

spine feels stiffer in the morning than it did prior to beginning LDN.

I know that few will agree with me..(that's okay, I was not seeking

permission)....I actually have started taking LDN every other night...as

opposed to every night.

Now, I am still on the very lowest dosage of 1.5 mg. I felt pretty good

prior to starting LDN...just numbness and tingling in both arms and right

leg, also had spasms periodically in my right leg just inside my knee. LDN

seems to have exacerbated that muscle spasm...had it over 25 times

yesterday.

I am not giving up on LDN...but just like anything...every body reacts

differently to it.

I have never believed it was the " be-all and end-all " .... Just a good option

to the standard MS protocol as far as meds are concerned.

I am also taking cod liver oil and Evening Primrose Oil. Also I am on

Prozac (generic fluoxetine)...and that helps to mediate the discomfort

somewhat. Every now and again I will take a 2.5 mg valium to really calm

down the muscle spasms. Hate to get used to that Valium, though...bad stuff

if you become dependent.

Good luck to you. You know better than anyone what your body is doing. In

spite of all the good information out there...you must make the final

determination in what is working and what is not.

[low dose naltrexone] Spastic legs and arms followup (getting worse)

> I emailed in a few weeks ago stating that I feel that

> the LDN is re-activating my old lesions (symptoms). A

> few emailed me; stating that I should stay on LDN 6 -

> 9 months and evaluate the results then. I appreciated

> the replies and felt that was a legitimate plan.

>

> But.. Now most of my body has become numb. My left

> hand does not work well (especially when typing -

> which I need to do often). My legs do not work well

> and seem to get a little bit worse every day. This can

> not continue!

>

> I started DL-PHENYLALANINE last week with no results

> yet. I stopped Avonex before starting LDN and have

> since started Copaxone also. If things do not improve

> quickly; I will have to stop LDN and go back on Avonex

> again. I do not want to go back on IV Steroids again

> either.

>

> I am open to suggestions and appreciate your advice,

> Steve

>

> (here is my original email)

> > I have been LDN for 5 weeks now. My legs have gotten

> > worse (numb, weak, stiff, hard to walk at times). My

> > hands are very stiff also. Some of it seems like it

> > has woken up my old lesions. I started at 4.5mg and

> > went down to 3mg for a week to no avail. I also

> > stopped Avonex and 2 weeks later started Copaxone. I

> > am very willing and open minded to give LDN all the

> > time it takes to work but.. how long I have to wait.

> > I

> > see that many recommend 6 months or so.

> > Would it make sense to " not " take LDN once or twice

> > a

> > week?

> > No, I am not stressed out about LDN and do have a

> > very

> > positive attitude.

> > I was diagnosed with MS over 4 years ago (on Avonex

> > and quarterly IV steroids for 4 years - no more

> > steroids for me). I have had MS for " at least " 15

> > years.

> > Thanks for listening/reading,

> > Steve

>

> __________________________________________________

>

June 20, 2005

In a message dated 6/20/2005 2:46:27 PM Central Daylight Time, radbower@... writes:

, your symptoms alarmed me, cause I'm also experiencing no improvement after 2 months on LDN (at 3.0mg for the 1st month, then 4.5ms for the 2nd) at all, and my MS symptoms are now worse than they've ever been before. I'm at an all-time low now, and am considering giving up and getting back on Copaxone, which maybe I was foolish to quit 3 months ago, after being fairly stable on that medication for 7 yrs (although I've clearly lost a lot of strength and have been in a wheelchair for the last 4 yrs, and have lost a lot in the last few months). Comments, anyone? Steroids did nothing for me last Oct, and I suspect may have actually cost me some of my loss of strength...

Rae

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Rae,

Remember here a while back, the Mayo Clinic came out with a report saying that people diagnosed with MS possibly should take a 'wait & see' approach before starting any of the traditional drugs out there. It's because 'they' can't conclusively prove that these drugs really slow progression. Don't beat yourself up for trying something different! I'm on LDN too, and I, too, continue to get weaker, but I don't blame LDN. I think it's from not being able to move. If you don't use it, you lose it. But what is one to do when he/she CAN'T use it? LDN and the CRABs, and steroids aren't miracle drugs. Do whatever you feel led to do. Try to hang in there. I get very discouraged too.

Marcie

June 20, 2005

, your symptoms alarmed me, cause I'm also experiencing no improvement after 2 months on LDN (at 3.0mg for the 1st month, then 4.5ms for the 2nd) at all, and my MS symptoms are now worse than they've ever been before. I'm at an all-time low now, and am considering giving up and getting back on Copaxone, which maybe I was foolish to quit 3 months ago, after being fairly stable on that medication for 7 yrs (although I've clearly lost a lot of strength and have been in a wheelchair for the last 4 yrs, and have lost a lot in the last few months). Comments, anyone? Steroids did nothing for me last Oct, and I suspect may have actually cost me some of my loss of strength...

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of CushingSent: Monday, June 20, 2005 12:13 PMlow dose naltrexone Subject: [low dose naltrexone] Spastic legs and arms followup (getting worse)

I emailed in a few weeks ago stating that I feel thatthe LDN is re-activating my old lesions (symptoms). Afew emailed me; stating that I should stay on LDN 6 –9 months and evaluate the results then. I appreciatedthe replies and felt that was a legitimate plan. But…. Now most of my body has become numb. My lefthand does not work well (especially when typing –which I need to do often). My legs do not work welland seem to get a little bit worse every day. This cannot continue! I started DL-PHENYLALANINE last week with no resultsyet. I stopped Avonex before starting LDN and havesince started Copaxone also. If things do not improvequickly; I will have to stop LDN and go back on Avonexagain. I do not want to go back on IV Steroids againeither. I am open to suggestions and appreciate your advice, Steve(here is my original email)> I have been LDN for 5 weeks now. My legs have gotten> worse (numb, weak, stiff, hard to walk at times). My> hands are very stiff also. Some of it seems like it> has woken up my old lesions. I started at 4.5mg and> went down to 3mg for a week to no avail. I also> stopped Avonex and 2 weeks later started Copaxone. I> am very willing and open minded to give LDN all the> time it takes to work but…… how long I have to wait.> I> see that many recommend 6 months or so. > Would it make sense to “not” take LDN once or twice> a> week?> No, I am not stressed out about LDN and do have a> very> positive attitude. > I was diagnosed with MS over 4 years ago (on Avonex> and quarterly IV steroids for 4 years – no more> steroids for me). I have had MS for “at least” 15> years. > Thanks for listening/reading,> Steve__________________________________________________

June 20, 2005

> In a message dated 6/20/2005 11:16:27 AM Central Daylight Time,

> nascush@y... writes:

>

> > I started DL-PHENYLALANINE last week with no results

> > yet. I stopped Avonex before starting LDN and have

> > since started Copaxone also. If things do not improve

> > quickly; I will have to stop LDN and go back on Avonex

> > again. I do not want to go back on IV Steroids again

> > either.

> >

> > I am open to suggestions and appreciate your advice,

> > Steve

>

> +++++++++++++++++++++++++++++++

Steve,

Drop down to 1.5mg for 1 month, then up to 2.0mg for about a month then up to

2.5mg for a month and up to 3.0mg.

June 20, 2005

In a message dated 6/20/2005 5:00:48 PM Central Daylight Time, bruce@... writes:

I wish I had some great words of wisdom to add to this thread, but I do not. I do not have MS, only terminal cancer. I may be on the lucky side of that, but it is way too early to tell. In a couple of months I will have beat the original predictions, but that is slim comfort. Only 150 to maybe 200 people per year in all of North America get what I have and anything I do is effectively unique to me. I do understand discouragement and depression, first hand. But that is not what life is about.

Obviously you want to fight what you have. This is good. All you can do is try and then try again. No one ever put a guarantee on anything short of death and taxes.

Give one more try to A. Brewer International Science Library in Richland, Wisc. 608.647.6513. They have a lot of information on many immune based illnesses and perhaps they can give you some insight thus far overlooked.

If there was more I could do for you, I would, but cancer victims are primarily who I work with.

Best of luck. Pray for peace and strength in your fight.

If there is anything I can do for you, drop a note.

Bruce Guilmette, Ph.D.

Survive Cancer Foundation, Inc

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Bruce,

I know this may sound elementary, but are you attempting to keep your body alkaline? I'm sure you are, but I just had that thought!

Marcie

June 20, 2005

I wish I had some great words of wisdom to

add to this thread, but I do not. I do not have MS, only terminal

cancer. I may be on the lucky side of that, but it is way too early to

tell. In a couple of months I will have beat the original predictions,

but that is slim comfort. Only 150 to maybe 200 people per year in all of

North America get what I have and anything I

do is effectively unique to me. I do understand discouragement and

depression, first hand. But that is not what life is about.

Obviously you want to fight what you have.

This is good. All you can do is try and then try again. No one ever put a

guarantee on anything short of death and taxes.

Give one more try to A. Brewer

International Science Library in Richland,

Wisc. 608.647.6513. They have a lot of information on many immune

based illnesses and perhaps they can give you some insight thus far overlooked.

If there was more I could do for you, I

would, but cancer victims are primarily who I work with.

Best of luck. Pray for peace and

strength in your fight.

If there is anything I can do for you,

drop a note.

Bruce Guilmette, Ph.D.

Survive Cancer Foundation, Inc.

http://www.survivecancer.net

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of marciemjm@...

Sent: Monday, June 20, 2005 5:10

PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Spastic legs and arms followup (getting worse)

In a message dated 6/20/2005 2:46:27 PM Central Daylight

Time, radbower@... writes:

,

your symptoms alarmed me, cause I'm also experiencing no improvement after 2

months on LDN (at 3.0mg for the 1st month, then 4.5ms for the 2nd) at all, and

my MS symptoms are now worse than they've ever been before. I'm at an

all-time low now, and am considering giving up and getting back on Copaxone,

which maybe I was foolish to quit 3 months ago, after being fairly stable on

that medication for 7 yrs (although I've clearly lost a lot of strength and

have been in a wheelchair for the last 4 yrs, and have lost a lot in the last

few months). Comments, anyone? Steroids did nothing for me last Oct, and I

suspect may have actually cost me some of my loss of strength...

Rae

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Rae,

Remember here a while back, the Mayo Clinic came out with a report saying that

people diagnosed with MS possibly should take a 'wait & see' approach

before starting any of the traditional drugs out there. It's because

'they' can't conclusively prove that these drugs really slow progression.

Don't beat yourself up for trying something different! I'm on LDN

too, and I, too, continue to get weaker, but I don't blame LDN. I think

it's from not being able to move. If you don't use it, you lose it.

But what is one to do when he/she CAN'T use it? LDN and the CRABs,

and steroids aren't miracle drugs. Do whatever you feel led to do.

Try to hang in there. I get very discouraged too.

Marcie

June 20, 2005

Thx for your kind words of encouragement. I guess I'm feeling a big 'low' and desperate right now.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Bruce Guilmette, Ph.D.Sent: Monday, June 20, 2005 5:59 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Spastic legs and arms followup (getting worse)

I wish I had some great words of wisdom to add to this thread, but I do not. I do not have MS, only terminal cancer. I may be on the lucky side of that, but it is way too early to tell. In a couple of months I will have beat the original predictions, but that is slim comfort. Only 150 to maybe 200 people per year in all of North America get what I have and anything I do is effectively unique to me. I do understand discouragement and depression, first hand. But that is not what life is about.

Obviously you want to fight what you have. This is good. All you can do is try and then try again. No one ever put a guarantee on anything short of death and taxes.

Give one more try to A. Brewer International Science Library in Richland, Wisc. 608.647.6513. They have a lot of information on many immune based illnesses and perhaps they can give you some insight thus far overlooked.

If there was more I could do for you, I would, but cancer victims are primarily who I work with.

Best of luck. Pray for peace and strength in your fight.

If there is anything I can do for you, drop a note.

Bruce Guilmette, Ph.D.

Survive Cancer Foundation, Inc.

http://www.survivecancer.net

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of marciemjm@...Sent: Monday, June 20, 2005 5:10 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Spastic legs and arms followup (getting worse)

In a message dated 6/20/2005 2:46:27 PM Central Daylight Time, radbower@... writes:

, your symptoms alarmed me, cause I'm also experiencing no improvement after 2 months on LDN (at 3.0mg for the 1st month, then 4.5ms for the 2nd) at all, and my MS symptoms are now worse than they've ever been before. I'm at an all-time low now, and am considering giving up and getting back on Copaxone, which maybe I was foolish to quit 3 months ago, after being fairly stable on that medication for 7 yrs (although I've clearly lost a lot of strength and have been in a wheelchair for the last 4 yrs, and have lost a lot in the last few months). Comments, anyone? Steroids did nothing for me last Oct, and I suspect may have actually cost me some of my loss of strength... Rae

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Rae, Remember here a while back, the Mayo Clinic came out with a report saying that people diagnosed with MS possibly should take a 'wait & see' approach before starting any of the traditional drugs out there. It's because 'they' can't conclusively prove that these drugs really slow progression. Don't beat yourself up for trying something different! I'm on LDN too, and I, too, continue to get weaker, but I don't blame LDN. I think it's from not being able to move. If you don't use it, you lose it. But what is one to do when he/she CAN'T use it? LDN and the CRABs, and steroids aren't miracle drugs. Do whatever you feel led to do. Try to hang in there. I get very discouraged too. Marcie

June 21, 2005

Absolutely. When first diagnosed, my

ph urine and saliva showed under 5. Last 3 blood and urine tests show 7.0

on morning test, fasting diet (also check blood sugar because cancer feeds on

sugar). Typical ph during the day ranges from low of 6.7 to high 7.8 Test

up to 6 times daily when first started and until stable. Now check

mornings and every other day spot check during day.

Have a short section on website dealing

with Ph levels under “physical health”.

Bruce Guilmette, Ph.D.

Survive Cancer Foundation, Inc.

http://www.survivecancer.net

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of marciemjm@...

Sent: Monday, June 20, 2005 7:03

PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Spastic legs and arms followup (getting worse)

In a message dated 6/20/2005 5:00:48 PM Central Daylight

Time, bruce@...

writes:

I wish I had some great words of wisdom to add to this

thread, but I do not. I do not have MS, only terminal cancer. I may

be on the lucky side of that, but it is way too early to tell. In a

couple of months I will have beat the original predictions, but that is slim comfort.

Only 150 to maybe 200 people per year in all of North

America get what I have and anything I do is effectively unique to

me. I do understand discouragement and depression, first hand. But

that is not what life is about.

Obviously you want to fight what you have. This is good. All

you can do is try and then try again. No one ever put a guarantee on

anything short of death and taxes.

Give one more try to A. Brewer International Science

Library in Richland,

Wisc. 608.647.6513. They have a lot of information on many immune

based illnesses and perhaps they can give you some insight thus far overlooked.

If there was more I could do for you, I would, but cancer

victims are primarily who I work with.

Best of luck. Pray for peace and strength in your fight.

If there is anything I can do for you, drop a note.

Bruce Guilmette, Ph.D.

Survive Cancer Foundation, Inc

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Bruce,

I know this may sound elementary, but are you attempting to keep your body

alkaline? I'm sure you are, but I just had that thought!

Marcie

June 21, 2005

If it will help, go to our website and

read “Beverly’s

Page.” My wife put it up when dealing with the mental issues

surrounding terminal cancer.

Truly hope it helps.

Bruce Guilmette, Ph.D.

Survive Cancer Foundation, Inc.

http://www.survivecancer.net

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of RaeAndDoug Bower

Sent: Monday, June 20, 2005 6:07

PM

low dose naltrexone

Subject: RE: [low dose naltrexone]

Spastic legs and arms followup (getting worse)

Thx for your

kind words of encouragement. I guess I'm feeling a big 'low' and desperate

right now.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Bruce Guilmette, Ph.D.

Sent: Monday, June 20, 2005 5:59

PM

low dose naltrexone

Subject: RE: [low dose naltrexone]

Spastic legs and arms followup (getting worse)

I wish I had some great words of wisdom to

add to this thread, but I do not. I do not have MS, only terminal

cancer. I may be on the lucky side of that, but it is way too early to

tell. In a couple of months I will have beat the original predictions, but

that is slim comfort. Only 150 to maybe 200 people per year in all of North America get what I have and anything I do is

effectively unique to me. I do understand discouragement and depression,

first hand. But that is not what life is about.