Re: LDN, what else... a long note though

[Guest guest]

Thanks for that post - I have wondered about the increase of endorphins from LDN, helping emotional well being. After all, they are our natural pain killers, however, we probably evolved with just enough being produced to keep us alive, as feeling too good in a world full of hyenas, probably didn't favor your reproductive chances. You just wouldn't have survived as long as homo sapiens that felt anxious and or paranoid.

I'll be trying naltrexone soon and will report back.

RO

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

From:

low dose naltrexone

Sent: Saturday, July 10, 2004 11:04 PM

Subject: [low dose naltrexone] LDN, what else... a long note though

I have another facet of LDN usage to discuss. I had a brief off-forum exchange with espousebar, but thought I'd bring the subject to the group now, as well.

First I want to make clear that I am not and have never been suicidal... I know that the doctors think that MSers react to the disease with increased levels of depression, but for me mild depression has always been the first symptom of a flare up, not an emotional response TO the flare up. I think it is a physical part of the disease process, not an emotional reaction to the disease. Once the flare up is over I'm back to my obnoxiously even natured self.

That said, I want to share what I think is an exceptionally important change that LDN has made. Prior to taking LDN I was not interested in living a long life. A long life just sounded like a chore and held no appeal. I can't say that I wanted to die, but also can't say that it seemed to matter much if I did. Sure, it seemed like dying would be a shame, but also a great release, too. The end of this endurance race had always seemed to be way out in the future, and that was good, but for the last year or two it looked like the finish line was just going to be too far away, and surviving to the end was just a chore. I enjoyed things that I did, friends, etc. But the thought of not having a long life was actually comforting rather than distressing.

After a while on LDN I realized that my attitude had changed. I still hate having MS, and the future is still a bit scary, but life is now a gift again instead of a chore. Funny, it was my boss that pointed out the change in my attitude. She asked if I was feeling better, commented that for the last year I hadn't been myself but that for the last month or two I was more like the old . Bless her for pointing it out to me! I am so lucky to have a supervisor whom I consider more family than a boss. And she's right; I do feel better.

It isn't a response to the physical changes. I don't feel all that great. This summer the heat has been bothering me more than usual, and the stiffness in the morning is a real bummer. I'm very much aware of MS and what it has done to me, getting reminders all day long from one body part or another. But I have a far better balance emotionally, and I do believe it is the LDN. Are any of you experiencing an improved sense of committment to and a great appreciation for your lives? If this is a widespread response to LDN it is reason enough for our doctors to get off their fannies and prescribe it...

[Guest guest]

I feel lucky cause I never felt depressed even when I found out that I had MS. At that point I felt happy that they finally found out that something was wrong and that I was not a crazy lady. But I have been on LDN for over 13 months now and I see changes taking place for the better. I can't wait until I see another change. This year the heat doesn't sem to bother me so much. I can work in my yard for hours without being drained. I went to a car show with my husband the other night, normally I would look at a couple of cars and then go back to my car and sit. But this time, my husband said that he was going to look at the cars and I said me too. I walked in and out of the cars with him all over the lot. There were hundreds of cars. Not an easy thing to do with two canes and a brace. But it didn't even seem to tire me. I felt great. I told you things were changing for the better. Hope all of you see your changes too.

Marie

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

From:

low dose naltrexone

Sent: Sunday, July 11, 2004 2:04 AM

Subject: [low dose naltrexone] LDN, what else... a long note though

I have another facet of LDN usage to discuss. I had a brief off-forum exchange with espousebar, but thought I'd bring the subject to the group now, as well.

First I want to make clear that I am not and have never been suicidal... I know that the doctors think that MSers react to the disease with increased levels of depression, but for me mild depression has always been the first symptom of a flare up, not an emotional response TO the flare up. I think it is a physical part of the disease process, not an emotional reaction to the disease. Once the flare up is over I'm back to my obnoxiously even natured self.

That said, I want to share what I think is an exceptionally important change that LDN has made. Prior to taking LDN I was not interested in living a long life. A long life just sounded like a chore and held no appeal. I can't say that I wanted to die, but also can't say that it seemed to matter much if I did. Sure, it seemed like dying would be a shame, but also a great release, too. The end of this endurance race had always seemed to be way out in the future, and that was good, but for the last year or two it looked like the finish line was just going to be too far away, and surviving to the end was just a chore. I enjoyed things that I did, friends, etc. But the thought of not having a long life was actually comforting rather than distressing.

After a while on LDN I realized that my attitude had changed. I still hate having MS, and the future is still a bit scary, but life is now a gift again instead of a chore. Funny, it was my boss that pointed out the change in my attitude. She asked if I was feeling better, commented that for the last year I hadn't been myself but that for the last month or two I was more like the old . Bless her for pointing it out to me! I am so lucky to have a supervisor whom I consider more family than a boss. And she's right; I do feel better.

It isn't a response to the physical changes. I don't feel all that great. This summer the heat has been bothering me more than usual, and the stiffness in the morning is a real bummer. I'm very much aware of MS and what it has done to me, getting reminders all day long from one body part or another. But I have a far better balance emotionally, and I do believe it is the LDN. Are any of you experiencing an improved sense of committment to and a great appreciation for your lives? If this is a widespread response to LDN it is reason enough for our doctors to get off their fannies and prescribe it...

[Guest guest]

I tend to agree with your comments on depression, . Everyone I

have talked to during my research of LDN over the past 6 months makes

the exact same claim.

My son has been taking LDN at 3 mg. for just over 2 weeks, but in

that short time, his entire demeanor has changed. He is 16 years

old, for those of you who don't know, and was diagnosed with MS 3

years ago. I know he suffered from depression while on the

interferons, even though most days he wouldn't admit it, but you

could see it in his face and hear it in his voice, and I know that at

times, it really scared me. Take those 16 year old out of control

hormones and throw depression into the mix and it's enough to

frighten anyone.

Now, as far as the origin of the depression, I've never been quite

sure. One of the main side effects of the interferons is listed as

depression. But is the depression caused by the medication itself,

or the dread of the needle and the side effects? I know that his

depression wasn't as bad on Avonex as it was on Rebif, but the Rebif

was 3 times the strength, and the shots were 3 times a week rather

than once a week with Avonex.

I believe the endorphins we produce play a huge part in our mental

well being. We didn't really warn my son of any " expectations " when

he started LDN, good or bad. I didn't want to " cloud " his view on it

all, in hopes that I could get a really good feel for what the

medication was doing for him. This past week, he told me that he

felt more like his old self than he had since this diagnosis turned

our world upside down 3 years ago this fall. I know that this is a

true statement, because we cannot keep the kid in one place for more

than 10 minutes, we're contemplating scheduling appointments to talk

to him.

, he was a playstation junkie before this. He would spend hours

every day in front of the t.v. until someone made him give it up. He

is an avid pc user, and if we made him quit the playstation, he would

just move to the pc in his room. His whole attitude is different,

now. Everyone has noticed it. He still stays up late, but gets up

earlier rather than stay in bed half the day. He has a smile on his

face constantly, and that is worth it's weight in gold

Now, is this because the LDN is lifting his depression and enhancing

his well being, or is this because of the fact that he doesn't have

to dread that shot 3 times a week? I once read somewhere that Rebif

stays in your system for 2/3 months after you stop it. (Not sure if

this is a true statement or not, but I know I read it somewhere along

the line...) After taking something like an interferon for over 2

years, I can't imagine it just disappearing over night, so I have to

go with the depression being caused by the lifestyle the interferons

imposed on him. It really doesn't matter, though, does it? He's the

happiest kid alive right now!

Just my thoughts. Hope you guys are having a great weekend!

Kim

> I have another facet of LDN usage to discuss. I had a brief off-

forum exchange with espousebar, but thought I'd bring the subject to

the group now, as well.

>

>

[Guest guest]

Amen

This is almost exactly how I responded to L.D.N. I thought I was a pretty well

adjusted guy and ready for retirement and I was coping with my disease well,until my

friends started to say something, like "gee you look good", or "what did you do,

win the lottery"?

The change in my outlook was evident to them almost from the first week! Yet I never

shaved off my moustache till the sixth month. Like you say I was quite eager to leave

this world before L.D.N. (yet not suicidal as my beliefs do not allow for that) and now I

can hardly wait for tomorrow. It is just to bad that (like others) the L.D.N. stopped

working on my symptoms after it fixed upabout six of them.

I would so like to golf again, but then that takes a certain amount

of balance, I guess I will just have to hope that the L.D.N. continues to work it's magic

and someday I will walk more often without my cane.

As ce said ( I hope it was you) it's all relative.

Reg.

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

From: low dose naltrexone

Date: 07/11/04 00:05:56

low dose naltrexone

Subject: [low dose naltrexone] LDN, what else... a long note though

I have another facet of LDN usage to discuss. I had a brief off-forum exchange with espousebar, but thought I'd bring the subject to the group now, as well.

First I want to make clear that I am not and have never been suicidal... I know that the doctors think that MSers react to the disease with increased levels of depression, but for me mild depression has always been the first symptom of a flare up, not an emotional response TO the flare

[Guest guest]

boy, can i relate to you julie!!

i worked for a boss who had no understanding or sympathy for

what i was going through. then, my own brother committed

suicide - again, my boss was more concerned with my

attendance. if only employers would be more compassionate!!

i'm glad ldn helps your mood - it helps me too.

and, if there's anyone out there that's suicidal, speak up -

tell your family, friends, anyone - or e-mail me at

bestaunt@.... i know the pain of depression and the

pain suicide leaves behind.

bestaunt

[Guest guest]

I do think it (lack of depression) has to do with the endorphin rush from LDN. I too was depressed and then rebif made it much worse, starting LDN and gettin off the Rebif, then the antidepressants and I am no longer clinically or emotionally depressed. Whatever LDN did or didn't do for me it did do that.

As well as the endorphins have decreased my pain. As my Neuro said, if it get MSers off all the pain meds, it is well worth it.

while I too, fear the future and look forward to it, as my disease is still progressing, I no longer live under a shadow of sorrow.

If it is all an endorphin high, that is fine with me.

Peace,

ZilNever give up, never surrender

[Guest guest]

I think the word is HOPE. When I met with Dr. B the first time,it was the first time since diagnosis I felt hopeful that this disease would stop.The big crease I had in the middle of my forhead has smoothed out. My friends and family tell me that they can see the pain in my face disappeared. I sleep now, I see a future where I am not a (big) burden to my family, I am grateful for the improvements no matter how small.

Sometimes I just could not bring myself to inject my meds no matter how hard I tried.That in itself was depressing. No need for them now.

I never thought of myself as depressed, but when one feels they are on a downward spiral, what else can one be?

LDN has relieved me of many worries , it has given me the streghth to fight harder and has led me to a wonderful group of people. Kiki

[Guest guest]

In the beginning, 7years ago, my doctor asked me if I was depressed. My answer was, "Duh??" I felt as if the rug had been pulled out from under my life. My progression happened so fast. He wrote me a script for Zoloft. I took it for about a month, and then I realized that it made NO difference in my state of mind, so I quit taking it. There was no chemical imbalance, just emotional imbalance.

Suicidal thoughts did cross my mind, but #1, I'm a big chicken, #2 , I was raised hellfire and brimstone Southern Baptist, and you don't get the chance to ask forgiveness, so you burn in Hades, #3, Gnostic Christians believe that if one takes their own life then their purpose for being put here on Earth was not fulfilled, so you get put back in utero only to come back in an almost identical life to fulfill God's purpose. I don't want to burn in Hades, and I don't want to come back here to do this again, so I decided to stick this life out and see what happens!!

I thought I did pretty good handling it, but now with LDN I am even better. Yes, my state of mind is better. My day to day life is still hard (really hard), but I, too, have more hope now than before. I do believe that I have gained some strength that I had lost. Bladder control is so much improved, therefore sleep is much better.

Some days I still wonder how I am going to be able to live this way 10, 15, or 20 years from now. I'm 42 years young, and the thought of living like this for the rest of my life seems impossible. The littlest things are extremely hard. I just keep hoping and believing that my progression has stopped and that I will continue to improve.

Being able to drive again has helped. It took a while to get my van modified. I had to take my driving test again, but that wasn't a problem. I don't keep the roads hot, but if I want to go to Wal-Mart, I can! My dog, Minnie, likes to go to the Sonic. She loves a few French Fries! She acts like we have been doing this forever!! If everyone saw through the eyes of a dog!! She acts like this wheelchair is invisible. I'm still supposed to do whatever she wants. There have been times that she has pushed me to do more than I knew I could do. Like when her ball rolls under the sofa. She barks non-stop until I figure out a way to reach it and get it out from under, then the game of Fetch goes on! (I had to find a baseball bat and run it along the underneath of the sofa until the ball rolled out!) The thought of me not being able to figure something out NEVER crosses her mind! The daughter I never had!!

Marcie (PPMS)

In a message dated 7/11/2004 9:17:42 PM Central Standard Time, noclue915@... writes:

I think the word is HOPE. When I met with Dr. B the first time,it was the first time since diagnosis I felt hopeful that this disease would stop.The big crease I had in the middle of my forhead has smoothed out. My friends and family tell me that they can see the pain in my face disappeared. I sleep now, I see a future where I am not a (big) burden to my family, I am grateful for the improvements no matter how small.

Sometimes I just could not bring myself to inject my meds no matter how hard I tried.That in itself was depressing. No need for them now. I never thought of myself as depressed, but when one feels they are on a downward spiral, what else can one be?

LDN has relieved me of many worries , it has given me the streghth to fight harder and has led me to a wonderful group of people. Kiki

[Guest guest]

Hi ,

You brought up a very good subtle change that probably effects all of us on ldn.

Not only does the ldn have definite positive effects but it also gives us all new hope and confidence that we are making progress in overcoming ms.

Good point and good post.

Regards,

Tom

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

From:

low dose naltrexone

Sent: Sunday, July 11, 2004 2:04 AM

Subject: [low dose naltrexone] LDN, what else... a long note though

I have another facet of LDN usage to discuss. I had a brief off-forum exchange with espousebar, but thought I'd bring the subject to the group now, as well.

First I want to make clear that I am not and have never been suicidal... I know that the doctors think that MSers react to the disease with increased levels of depression, but for me mild depression has always been the first symptom of a flare up, not an emotional response TO the flare up. I think it is a physical part of the disease process, not an emotional reaction to the disease. Once the flare up is over I'm back to my obnoxiously even natured self.

That said, I want to share what I think is an exceptionally important change that LDN has made. Prior to taking LDN I was not interested in living a long life. A long life just sounded like a chore and held no appeal. I can't say that I wanted to die, but also can't say that it seemed to matter much if I did. Sure, it seemed like dying would be a shame, but also a great release, too. The end of this endurance race had always seemed to be way out in the future, and that was good, but for the last year or two it looked like the finish line was just going to be too far away, and surviving to the end was just a chore. I enjoyed things that I did, friends, etc. But the thought of not having a long life was actually comforting rather than distressing.

After a while on LDN I realized that my attitude had changed. I still hate having MS, and the future is still a bit scary, but life is now a gift again instead of a chore. Funny, it was my boss that pointed out the change in my attitude. She asked if I was feeling better, commented that for the last year I hadn't been myself but that for the last month or two I was more like the old . Bless her for pointing it out to me! I am so lucky to have a supervisor whom I consider more family than a boss. And she's right; I do feel better.

It isn't a response to the physical changes. I don't feel all that great. This summer the heat has been bothering me more than usual, and the stiffness in the morning is a real bummer. I'm very much aware of MS and what it has done to me, getting reminders all day long from one body part or another. But I have a far better balance emotionally, and I do believe it is the LDN. Are any of you experiencing an improved sense of committment to and a great appreciation for your lives? If this is a widespread response to LDN it is reason enough for our doctors to get off their fannies and prescribe it...