New to LDN

[Guest guest]

--

msblonde

Open up the capsule and take some LDN out. I have done this with

great success.

Steve

In low dose naltrexone , " msblonde716 "

<msblonde716@y...> wrote:

> I just started to take LDN on Saturday night. I'm taking 4.5 mgs.

> However, I'm feeling a bit sick to my stomach.. Has this happened

to

> anyone? I also dont' have the energy that people talk about. Does

> that come later??? I have RRMS and was dx 2001. Any suggestions???

[Guest guest]

Arlene I wish you lots of luck!!!

From: Arlene Lizotte

[mailto:alcha508@...]

Sent: Friday, April 02, 2004 7:07

AM

low dose naltrexone

Subject: [low dose naltrexone] New

to LDN

Hi all

Have only written a couple of times before.

Went to my neuro yesterday (April 1). He said that he believes I have

gone to Secondary Progressive from RR. I was dx'd originally in June,

2001, but looking back very first symptom was in1991. Anyway being told I

was SP was disheartening. I am presently taking Copaxone and he didn't

say to stop it, but I thought it was only for RR. Anybody know?

And, can I stop it just like that or do I have to wean off?

The good news is he gave me a script for LDN 3 mg. He read all of the

stuff I sent him last week, and altho he said a lot of his colleagues turn

their noses up, he can't see it would do any harm. Since I'm in Michigan,

I'm getting it out-of-state, and the doctor's office called it in yesterday.

Hopefully I'll get it Saturday, or at least by Monday. Wish me luck.

Thanks

Arlene

[Guest guest]

Steve & Marcie,

I was also very stiff before starting LDN last July 4.5mg. I have remained stiff most of that time. Two weeks ago Dr. Bihari suggested reducing the dose to 3.0mg. I did that and at the same time I started to take 100mg of "Benfotiamine" a lipid form of Vit. B-1 or Thiamine four times a day.

There has been some improvement with the stiffness. Some days are dramatically improved and some days not but definitely noticeable.

Regards,

Tom

[Guest guest]

---Marcie

Every now and then, say twice a month, don't take it for 2 or 3 days

and then go back to the 3mg dose. That's what I do. It's almost like

stages you go thru. I have days when I'm Stiff, and I have days when

I have almost no stiffness at all!(those are the scary days) You try

to do too much !

Steve

In low dose naltrexone , marciemjm@a... wrote:

> Steve,

>

> I know that no one has any hard answers, but I want to ask you

something. I

> was stiff to begin with (very stiff). What are the chances that

this symptom

> will see some relief in time? There's nothing I can do except just

deal with

> it. Some days it is less than others, but for the most part, I'm

always

> stiff. I alternate between 3mg and 4.5mg LDN w/calcium carbonate

filler. I had

> cornstarch in the beginning (Nov 3, 2003), but that caused terrible

bowel

> problems for me. I'm not giving up on LDN!

>

> Marcie (PPMS)

>

>

>

> In a message dated 4/2/2004 8:19:09 AM Central Standard Time,

> stevetazzer@y... writes:

>

>

> > Subj:[low dose naltrexone] Re: New to LDN

> > Date:4/2/2004 8:19:09 AM Central Standard Time

> > From: stevetazzer@y... (stevetazzer)

> > Reply-to: <A

HREF= " mailto:low dose naltrexone " >low dose naltrexone@yaho

ogroups.com</A>

> > low dose naltrexone

> >

> >

> >

> >

> > ---Best of luck Arlene! I'm SPMS and on no other meds except LDN

and

> > some MJ every now and then! Give it time, endure the stiffness,

you

> > will notice results!

> > Steve

> >

> >

[Guest guest]

Hi Steve,

I'm new to this site and I haven't started LDN yet. It sounds good, or not, depending on who I talk to. I worry about the sleep problems with the LDN. I already have a sleep disorder that has a fancy name but it basically means, "I don’t sleep." I worry that the LDN will make this worse. Do you notice any insomnia from it?

Lori

PS I don't smoke so MJ is pretty much out of the question. lol

Lori

[Guest guest]

Of course MSWatch says it doesn't. They even used to ban people for even mentioning LDN!

LDN seems to affect people differently in the sleep department. Some sleep better than they ever had before (me), others get vivid dreams, etc.

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

From: Lori Jensen

low dose naltrexone

Sent: Friday, April 02, 2004 17:39

Subject: Re: [low dose naltrexone] New to LDN

Hi Arlene,

Copaxone is "insurance company approved" RR. In some states it may be necessary to get your doc to "fake" her diagnosis and call it to continue coverage. My neuro says that it IS stilll effective in SP so keep taking it.

I've a question about LDN. I haven't started it yet. The only info I've gotten is from the LDN site or from MSWatch. Of course the LDN site says its wonderful and the MSWwatch site says its not.

I already have a sleep disorder (can't sleep without drugs ) Does the LDN really cause much of a sleep problem. I'm already exhausted. All I can do is watch TV all night and when the sun comes up I might be able to take a nap for an hour or two.

[Guest guest]

Lori,

LDN can cause some sleep disturbances in the beginning, but it usually only lasts temporarily. I guess it could affect you differently since you already have a problem sleeping. You will never know until you try. It may even help your sleep!

Marcie (PPMS)

\\In a message dated 4/2/2004 5:07:52 PM Central Standard Time, lorijens@... writes:

Subj:Re: [low dose naltrexone] Re: New to LDN

Date:4/2/2004 5:07:52 PM Central Standard Time

From: lorijens@... (Lori Jensen)

Reply-to: low dose naltrexone

low dose naltrexone

Hi Steve,

I'm new to this site and I haven't started LDN yet. It sounds good, or not, depending on who I talk to. I worry about the sleep problems with the LDN. I already have a sleep disorder that has a fancy name but it basically means, "I don’t sleep." I worry that the LDN will make this worse. Do you notice any insomnia from it?

Lori

PS I don't smoke so MJ is pretty much out of the question. lol

Lori

[Guest guest]

Hi Lori,

You should know that LDN does cause sleep

problems for some. Many only have the

problem the first couple of weeks.

However, in my case I had to drop down to 1.5 before I could get a full

8 hours of sleep. It effects each of us very

differently. Good luck!

(MS)

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

From: Lori Jensen

[mailto:lorijens@...]

Sent: Friday, April 02, 2004 5:47

PM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: New to LDN

Hi

Steve,

I'm

new to this site and I haven't started LDN yet. It sounds good, or not,

depending on who I talk to. I worry about the sleep problems with the

LDN. I already have a sleep disorder that has a fancy name but it

basically means, " I don’t sleep. " I worry that the

LDN will make this worse. Do you notice any insomnia from it?

Lori

PS

I don't smoke so MJ is pretty much out of the question. lol

Lori

[Guest guest]

Marie,

That is good news! I am on day 150 on LDN, and last night I slept for 8 hours before getting up the first time! That is the 2nd time that this has happened in the past 5 years. Both times have been since starting LDN on Nov 3, 2003! I look forward to continued improvement!

Marcie

In a message dated 4/5/2004 9:28:13 AM Central Standard Time, Mardea@... writes:

Subj:Re: [low dose naltrexone] Re: New to LDN

Date:4/5/2004 9:28:13 AM Central Standard Time

From: Mardea@... (Marie Deady)

Reply-to: low dose naltrexone

low dose naltrexone

Hi Tom,

Remember I told you that I had no changes in my bladder urgency. I was still getting up every 11/2 to 2 hours each night. I have been on LDN for 10 months now. In the last week or so, I have noticed that I sleep every night for about 4 to 5 hours before getting up to use the bathroom. The longer that I am on this drug the better that it gets. Just thought that you might like to know.

Marie

----- Original Message ----- From: tmbayuk low dose naltrexone Sent: Monday, April 05, 2004 10:03 AM

Subject: Re: [low dose naltrexone] Re: New to LDN

Hi ,

I think you will be pleased with LDN. One of the most significant improvements that I have had is a definite lessening of urinary urgency and frequency. That was noticeable from the first day and has held steady since last July when I started.

Regards,

Tom

[Guest guest]

Hi ,

I think you will be pleased with LDN. One of the most significant improvements that I have had is a definite lessening of urinary urgency and frequency. That was noticeable from the first day and has held steady since last July when I started.

Regards,

Tom

[Guest guest]

Hi Tom,

Remember I told you that I had no changes in my bladder urgency. I was still getting up every 11/2 to 2 hours each night. I have been on LDN for 10 months now. In the last week or so, I have noticed that I sleep every night for about 4 to 5 hours before getting up to use the bathroom. The longer that I am on this drug the better that it gets. Just thought that you might like to know.

Marie

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

From: tmbayuk

low dose naltrexone

Sent: Monday, April 05, 2004 10:03 AM

Subject: Re: [low dose naltrexone] Re: New to LDN

Hi ,

I think you will be pleased with LDN. One of the most significant improvements that I have had is a definite lessening of urinary urgency and frequency. That was noticeable from the first day and has held steady since last July when I started.

Regards,

Tom

[Guest guest]

Hi Marie,

Glad to her your good news. LDN is definitely the most productive thing that I have done for my ms in the last 20 yrs. other than my vitamins and exercise. Tell your nephew he can save himself a lot of frustration and heartache if he takes charge of his own health. The only thing the Lahey Clinic did for the past 20 yrs. was to tell me if I was getting worse or staying the same. ( As if I didn't know. ) Tell him to get my new book, it will give him all the options that has and can do himself........that work. www.copingandprevailing.com

Regards,

Tom

[Guest guest]

That is great Marcie. I am sure thqt you will continue to see changes for the better. I think that the longer that you are on LDN, that you will continue to see good things happening.

Good Luck

Marie

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

From: marciemjm@...

low dose naltrexone

Sent: Monday, April 05, 2004 12:37 PM

Subject: Re: [low dose naltrexone] Re: New to LDN

Marie, That is good news! I am on day 150 on LDN, and last night I slept for 8 hours before getting up the first time! That is the 2nd time that this has happened in the past 5 years. Both times have been since starting LDN on Nov 3, 2003! I look forward to continued improvement! Marcie In a message dated 4/5/2004 9:28:13 AM Central Standard Time, Mardea@... writes:

Subj:Re: [low dose naltrexone] Re: New to LDN Date:4/5/2004 9:28:13 AM Central Standard Time From: Mardea@... (Marie Deady) Reply-to: low dose naltrexone low dose naltrexone Hi Tom, Remember I told you that I had no changes in my bladder urgency. I was still getting up every 11/2 to 2 hours each night. I have been on LDN for 10 months now. In the last week or so, I have noticed that I sleep every night for about 4 to 5 hours before getting up to use the bathroom. The longer that I am on this drug the better that it gets. Just thought that you might like to know. Marie

----- Original Message ----- From: tmbayuk low dose naltrexone Sent: Monday, April 05, 2004 10:03 AM Subject: Re: [low dose naltrexone] Re: New to LDN Hi , I think you will be pleased with LDN. One of the most significant improvements that I have had is a definite lessening of urinary urgency and frequency. That was noticeable from the first day and has held steady since last July when I started. Regards, Tom

[Guest guest]

Marie,

You don't know how glad that made me feel! I'm not every 11/2 to 2 hours but I get up at twice every night. Have only been on LDN for 11/2 months, so there is hope for me yet!! Thanks for sharing.

From: Marie Deady [mailto:Mardea@...] Sent: Monday, April 05, 2004 10:42 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: New to LDN

Hi Tom,

Remember I told you that I had no changes in my bladder urgency. I was still getting up every 11/2 to 2 hours each night. I have been on LDN for 10 months now. In the last week or so, I have noticed that I sleep every night for about 4 to 5 hours before getting up to use the bathroom. The longer that I am on this drug the better that it gets. Just thought that you might like to know.

Marie

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

From: tmbayuk

low dose naltrexone

Sent: Monday, April 05, 2004 10:03 AM

Subject: Re: [low dose naltrexone] Re: New to LDN

Hi ,

I think you will be pleased with LDN. One of the most significant improvements that I have had is a definite lessening of urinary urgency and frequency. That was noticeable from the first day and has held steady since last July when I started.

Regards,

Tom

[Guest guest]

YIPPEE! I'M WAITING FOR THE DAY WHEN I CAN SLEEP 8 STRAIGHT

HOURS AGAIN. I FIND MYSELF JEALOUS OF MY 2 NEPHEWS WHO

SLEEP 10+ HOURS STRAIGHT - THEY'RE 4 AND 11. REMEMBER THOSE

DAYS???

BESTAUNT

[Guest guest]

2 nights ago I went to bed at 3:30am and woke up shortly after 12 and boy was my bladder full! But no urgency, it patiently waited until I got out of bed and made it to the bathroom.

I usually will get up once through the night, sometimes not.. but I rarely get 8+ hours sleep in a row, and without waking up to go. So the other night stood out. After I went I was like "hey, wait a sec, I didn't get up and go, did I?". I usually remember.

The last time I got more than 8 hours was back in July, and in July I also had a 9 hr and 11 hr period. I was camping out and had a few good days. I think I went 3 times in a 28 hour period, but then the next day it was raining and I had to go more often than I was at that time.

Even before I knew I had MS I felt I was going, and having to go, more frequently than I had in past years, but the previous 13 months to starting LDN I was dealing with urgency and frequency. At one point it was so bad I was having urgency and frequency sometimes up to 3 times an hour. It was torture. But since Day 11 of LDN I think my bladder is better than it's ever been for as long as I can remember.

Boy, I'll say one thing though.. never in a million years did I ever think I'd be typing about these things so nonchalantly.

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

From: Baden

low dose naltrexone

Sent: Monday, April 05, 2004 16:56

Subject: RE: [low dose naltrexone] Re: New to LDN

Marie,

You don't know how glad that made me feel! I'm not every 11/2 to 2 hours but I get up at twice every night. Have only been on LDN for 11/2 months, so there is hope for me yet!! Thanks for sharing.

From: Marie Deady [mailto:Mardea@...] Sent: Monday, April 05, 2004 10:42 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: New to LDN

Hi Tom,

Remember I told you that I had no changes in my bladder urgency. I was still getting up every 11/2 to 2 hours each night. I have been on LDN for 10 months now. In the last week or so, I have noticed that I sleep every night for about 4 to 5 hours before getting up to use the bathroom. The longer that I am on this drug the better that it gets. Just thought that you might like to know.

Marie

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

From: tmbayuk

low dose naltrexone

Sent: Monday, April 05, 2004 10:03 AM

Subject: Re: [low dose naltrexone] Re: New to LDN

Hi ,

I think you will be pleased with LDN. One of the most significant improvements that I have had is a definite lessening of urinary urgency and frequency. That was noticeable from the first day and has held steady since last July when I started.

Regards,

Tom

[Guest guest]

Arlene,

Our stories sound identical!! I used to measure my water each day to make sure that I was drinking an adequate amount. I finally got tired of needing to go to the restroom 4 - 5 times per hour, so I started drinking if I felt thirsty. I don't drink a full glass of water with my bedtime LDN! I have a hard enough time getting out of bed anyways! It takes me a good two to three minutes just to get my legs off of the bed! I haven't had any problems just taking a couple of swallows of water. LDN has helped this situation tremendously! Yes, I could see a difference after the first dose!

Marcie (PPMS)

In a message dated 4/6/2004 8:31:11 AM Central Standard Time, alcha508@... writes:

Subj:Re: [low dose naltrexone] Re: New to LDN

Date:4/6/2004 8:31:11 AM Central Standard Time

From: alcha508@... (Arlene Lizotte)

Reply-to: low dose naltrexone

low dose naltrexone

Larry

I started my LDN last night at about 9:45pm. I know I probably won't see any results with the first dose. Re the bladder relief, the pharmacist I get my LDN from told me I should take the LDN with full glass of water to avoid stomach upset. I don't see how drinking a full glass of water at 10 pm is going to ever allow me to not have to get up several times during the night. Last night I had to get up every hour from 11:30 to 3:30. I get up at 5 am. I usually don't drink much during the day 'cuz I 'm in the bathroom about 4-5 times an hour. I know not having enuf water is not good for me, but I don't like rushing and not making it.

Do you take ther LDN with a full glass of water?

Arlene

LarryGC <larrygc@...> wrote:

2 nights ago I went to bed at 3:30am and woke up shortly after 12 and boy was my bladder full! But no urgency, it patiently waited until I got out of bed and made it to the bathroom.

I usually will get up once through the night, sometimes not.. but I rarely get 8+ hours sleep in a row, and without waking up to go. So the other night stood out. After I went I was like "hey, wait a sec, I didn't get up and go, did I?". I usually remember.

The last time I got more than 8 hours was back in July, and in July I also had a 9 hr and 11 hr period. I was camping out and had a few good days. I think I went 3 times in a 28 hour period, but then the next day it was raining and I had to go more often than I was at that time.

Even before I knew I had MS I felt I was going, and having to go, more frequently than I had in past years, but the previous 13 months to starting LDN I was dealing with urgency and frequency. At one point it was so bad I was having urgency and frequency sometimes up to 3 times an hour. It was torture. But since Day 11 of LDN I think my bladder is better than it's ever been for as long as I can remember.

[Guest guest]

Oh you're asking the wrong person that question! I don't take ANYTHING with water. I may go grab a cup afterwards if it doesn't feel right going down, but I drive people nuts when I just pop pills or vitamins dry while they can't get enough liquid to get whatever they're trying to swallow down.

If I go for water, it's usually just a little sip.

The FiberCaps I have and tried a few months ago are the only exception, there's a very strong warning about not drinking at least 8 oz of water with them.

4-5 times an hour? Wow! That's worse than I had it. I do hope LDN helps you in that department!

If you get stomach upset, you'd be sleeping, no?

I take mine usually an hour or two after I wake up at 11:30PM.

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

From: Arlene Lizotte

low dose naltrexone

Sent: Tuesday, April 06, 2004 10:27

Subject: Re: [low dose naltrexone] Re: New to LDN

Larry

I started my LDN last night at about 9:45pm. I know I probably won't see any results with the first dose. Re the bladder relief, the pharmacist I get my LDN from told me I should take the LDN with full glass of water to avoid stomach upset. I don't see how drinking a full glass of water at 10 pm is going to ever allow me to not have to get up several times during the night. Last night I had to get up every hour from 11:30 to 3:30. I get up at 5 am. I usually don't drink much during the day 'cuz I 'm in the bathroom about 4-5 times an hour. I know not having enuf water is not good for me, but I don't like rushing and not making it.

Do you take ther LDN with a full glass of water?

Arlene

[Guest guest]

Thats Great Larry!

I hear you! For myself, I can now sleep the entire night without having to get up

4-5 times. But I also make sure I don't drink a lot of fluids at "least" an hour before

bedtime. Whatever works, works.

Have a Great Day everyone!

Jim(ms)

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

From: LarryGC

low dose naltrexone

Sent: Monday, April 05, 2004 10:59 PM

Subject: Re: [low dose naltrexone] Re: New to LDN

2 nights ago I went to bed at 3:30am and woke up shortly after 12 and boy was my bladder full! But no urgency, it patiently waited until I got out of bed and made it to the bathroom.