ldn benefits and side effects

[Guest guest]

I thought I was done posting here as I didn't care for the stress

and aggression I have felt when I disagree with the majority. Thank

you very much to all of you who have written to me privately to

encourage me to share my experiences--good and bad. However, an

incident this evening made me feel compelled to write.

I was diagnosed with ALS in November 2004 and started ldn three

months ago this week as my neurologist and I both couldn't see that

there would be a downside to it, and honestly there aren't exactly a

plethora of treatment options for my illness. This was also was

consistent to the experience of the ALS expert in my area. He has

had patients who have taken ldn for various lengths of time.

I can unequivocably say that I have had AMAZING physical results

with ldn and stretching/yoga. I am now moving at a level I have not

been able to do for six months. To me, this is more than

amazing...I frankly consider it a miracle!

That said, I am one of a few people I have spoken to who also have

had very difficult side effects while on ldn. I have made light and

joked about that when these mood swings occur I am afraid I will

hurt myself in my attempts to contain it. Tonight, I chipped a

tooth when in anger I slammed my teeth together. It sounds like a

joke, but it is absolutely not. It's not funny, it hurts, and it

scares me. Having always had good dental health and emotional

stability, this speaks to the degree of anxiety I am feeling and is

very frightening. It isn't as though I am vulnerable there...it is

more indicative of the degree of problems I have controlling

these " rage " moments.

However, I am terrified of stopping the ldn. I have had such

wonderful progress, I am scared to death (literally) of a relapse.

The point of my e-mail is this. Yes, for me, I can very comfortably

and positively say that the combination of ldn/yoga/stretching has

taken me back to a level of activity I never expected to have

happen. And yes, my primary doctor has been astounded at what has

occurred, as was the nurse when I called last week regarding

possible side effects.

But one must remember--any medication or supplement must be taken

with extreme care and caution. Do I regret starting the ldn? No.

I believe wholeheartedly that it has given me time on this earth

that I never expected nor would have had without stem cells.

However, I can completely identify with what (and some people

who have written me privately) mentioned. The side effects I have

experienced are horrible to the point that I really can't describe

it. There are times where the stress of the " rages " has been so

overwhelming that I don't know how to handle it. I am now taking

medication to counteract these side effects. (Initially as an

experiment, now at the suggestion of my neurologist.) I guess I

want to say that THERE IS NOTHING WRONG WITH YOU IF YOU DON'T HAVE

THE SAME EXPERIENCE AS OTHER PEOPLE!

I actually felt guilty, as if there is something wrong with ME, when

I initially complained of mood swings that seemed to correspond with

my starting ldn. Would I recommend ldn? Yes...with the absolute

understanding that there can be a downside for some. Just like with

any other medication.

I will be seeing my neurologist on Friday, and am very interested in

what he has to say about these problems. However, his nurse has

already prescribed medication to bout what she termed " emotional

problems that can occur with ldn " . Perhaps my experience is wildly

different that those who take ldn for MS...I certainly don't want to

assume that isn't the case.

Anyway, this is where I am with ldn. I love the results, hate the

side effects that my neurologist obviously feels is related to the

medication.

Good luck all of you, and I will post on Friday after I have spoken

at length with my neurologist.

Be Well,

ps--I want ldn to be successful...but it doesn't help the cause when

people are berated for having difficulty. Can I suggest a common

expression LAY OFF? We all need to learn from each other's

experience, and it doesn't help to be insulting.

[Guest guest]

,

Thank you very much for sharing your experiences. I know how

difficult, but at the same time beneficial it is to do this, even

when there may be detractors. Truth said, it is ONLY through the

sharing of the good AND the not so good experiences can we learn

what we all need to.

I hope that your neuro can remedy the side effects that you are

experiencing and that you can continue to enjoy the " good " effects

of LDN for a long, LONG time. Love, God Bless, and thank you again,

Bill

--- In low dose naltrexone , " " <bbddcat@...>

wrote:

>

> I thought I was done posting here as I didn't care for the stress

> and aggression I have felt when I disagree with the majority.

Thank

> you very much to all of you who have written to me privately to

> encourage me to share my experiences--good and bad. However, an

> incident this evening made me feel compelled to write.

>

> I was diagnosed with ALS in November 2004 and started ldn three

> months ago this week as my neurologist and I both couldn't see

that

> there would be a downside to it, and honestly there aren't exactly

a

> plethora of treatment options for my illness. This was also was

> consistent to the experience of the ALS expert in my area. He has

> had patients who have taken ldn for various lengths of time.

>

> I can unequivocably say that I have had AMAZING physical results

> with ldn and stretching/yoga. I am now moving at a level I have

not

> been able to do for six months. To me, this is more than

> amazing...I frankly consider it a miracle!

>

> That said, I am one of a few people I have spoken to who also have

> had very difficult side effects while on ldn. I have made light

and

> joked about that when these mood swings occur I am afraid I will

> hurt myself in my attempts to contain it. Tonight, I chipped a

> tooth when in anger I slammed my teeth together. It sounds like a

> joke, but it is absolutely not. It's not funny, it hurts, and it

> scares me. Having always had good dental health and emotional

> stability, this speaks to the degree of anxiety I am feeling and

is

> very frightening. It isn't as though I am vulnerable there...it

is

> more indicative of the degree of problems I have controlling

> these " rage " moments.

>

> However, I am terrified of stopping the ldn. I have had such

> wonderful progress, I am scared to death (literally) of a relapse.

>

> The point of my e-mail is this. Yes, for me, I can very

comfortably

> and positively say that the combination of ldn/yoga/stretching has

> taken me back to a level of activity I never expected to have

> happen. And yes, my primary doctor has been astounded at what has

> occurred, as was the nurse when I called last week regarding

> possible side effects.

>

> But one must remember--any medication or supplement must be taken

> with extreme care and caution. Do I regret starting the ldn?

No.

> I believe wholeheartedly that it has given me time on this earth

> that I never expected nor would have had without stem cells.

> However, I can completely identify with what (and some

people

> who have written me privately) mentioned. The side effects I have

> experienced are horrible to the point that I really can't describe

> it. There are times where the stress of the " rages " has been so

> overwhelming that I don't know how to handle it. I am now taking

> medication to counteract these side effects. (Initially as an

> experiment, now at the suggestion of my neurologist.) I guess I

> want to say that THERE IS NOTHING WRONG WITH YOU IF YOU DON'T HAVE

> THE SAME EXPERIENCE AS OTHER PEOPLE!

>

> I actually felt guilty, as if there is something wrong with ME,

when

> I initially complained of mood swings that seemed to correspond

with

> my starting ldn. Would I recommend ldn? Yes...with the absolute

> understanding that there can be a downside for some. Just like

with

> any other medication.

>

> I will be seeing my neurologist on Friday, and am very interested

in

> what he has to say about these problems. However, his nurse has

> already prescribed medication to bout what she termed " emotional

> problems that can occur with ldn " . Perhaps my experience is

wildly

> different that those who take ldn for MS...I certainly don't want

to

> assume that isn't the case.

>

> Anyway, this is where I am with ldn. I love the results, hate the

> side effects that my neurologist obviously feels is related to the

> medication.

>

> Good luck all of you, and I will post on Friday after I have

spoken

> at length with my neurologist.

>

> Be Well,

>

>

>

> ps--I want ldn to be successful...but it doesn't help the cause

when

> people are berated for having difficulty. Can I suggest a common

> expression LAY OFF? We all need to learn from each other's

> experience, and it doesn't help to be insulting.

>

[Guest guest]

I am going to interject here. If thats such a word. What has said below is not some brief crying jag. This is very real. It shakes you to the core and makes you feel like you don't know yourself. I took it upon myself to find answers. Not only for me but more importantly for Cath. This is not some game. This is very real as I have been through it. Unfortunately does not have an option. She has als. Not the good kind. Think about this. How bad can mood swings and depression be to make one question a drug thats helping there als. Answers is it must be pretty damn bad. I don't have als. I have ms and will not die as a direct result. I do have options. That being if I went off ldn I would still be here. I went off it and asked everyone I knew including those here for help. Yes help for me but more IMPORTANTLY help for . I feel so bad that I even suggested this drug to her. I know how she feels. Please do not say oh no not the ldn. Be glad that I didn't do what most do when they have to go off it. Leave the group and say nothing. After all its easier to leave quietly then stick around and try to explain to others how you are feeling, only to be told its not the ldn. I was told that by 2 gentleman with ms who I am close to. I asked one, can I maybe talk to the others who had to stop. Trouble was they had so much grief even mentioning the ldn was at fault that it was easier to just go.

This is very sad. It should not be this hard. If you thought for a moment what we have been trying to achieve you will see we are not the bad guys. This is not a game to keep score. 1 pro ldn 2 con ldn. We are on the same side. We are agreeing that the ldn does work. However all you can see is someone who is against ldn. That is so not it. I'm gone! I will unsub somehow some where. All I can say is if this is brought up again, don't sweep it under the rug. It's nothing to fool around with.>> I thought I was done posting here as I didn't care for the stress > and aggression I have felt when I disagree with the majority. Thank > you very much to all of you who have written to me privately to > encourage me to share my experiences--good and bad. However, an > incident this evening made me feel compelled to write.> > I was diagnosed with ALS in November 2004 and started ldn three > months ago this week as my neurologist and I both couldn't see that > there would be a downside to it, and honestly there aren't exactly a > plethora of treatment options for my illness. This was also was > consistent to the experience of the ALS expert in my area. He has > had patients who have taken ldn for various lengths of time. > > I can unequivocably say that I have had AMAZING physical results > with ldn and stretching/yoga. I am now moving at a level I have not > been able to do for six months. To me, this is more than > amazing...I frankly consider it a miracle!> > That said, I am one of a few people I have spoken to who also have > had very difficult side effects while on ldn. I have made light and > joked about that when these mood swings occur I am afraid I will > hurt myself in my attempts to contain it. Tonight, I chipped a > tooth when in anger I slammed my teeth together. It sounds like a > joke, but it is absolutely not. It's not funny, it hurts, and it > scares me. Having always had good dental health and emotional > stability, this speaks to the degree of anxiety I am feeling and is > very frightening. It isn't as though I am vulnerable there...it is > more indicative of the degree of problems I have controlling > these "rage" moments.> > However, I am terrified of stopping the ldn. I have had such > wonderful progress, I am scared to death (literally) of a relapse.> > The point of my e-mail is this. Yes, for me, I can very comfortably > and positively say that the combination of ldn/yoga/stretching has > taken me back to a level of activity I never expected to have > happen. And yes, my primary doctor has been astounded at what has > occurred, as was the nurse when I called last week regarding > possible side effects.> > But one must remember--any medication or supplement must be taken > with extreme care and caution. Do I regret starting the ldn? No. > I believe wholeheartedly that it has given me time on this earth > that I never expected nor would have had without stem cells. > However, I can completely identify with what (and some people > who have written me privately) mentioned. The side effects I have > experienced are horrible to the point that I really can't describe > it. There are times where the stress of the "rages" has been so > overwhelming that I don't know how to handle it. I am now taking > medication to counteract these side effects. (Initially as an > experiment, now at the suggestion of my neurologist.) I guess I > want to say that THERE IS NOTHING WRONG WITH YOU IF YOU DON'T HAVE > THE SAME EXPERIENCE AS OTHER PEOPLE!> > I actually felt guilty, as if there is something wrong with ME, when > I initially complained of mood swings that seemed to correspond with > my starting ldn. Would I recommend ldn? Yes...with the absolute > understanding that there can be a downside for some. Just like with > any other medication.> > I will be seeing my neurologist on Friday, and am very interested in > what he has to say about these problems. However, his nurse has > already prescribed medication to bout what she termed "emotional > problems that can occur with ldn". Perhaps my experience is wildly > different that those who take ldn for MS...I certainly don't want to > assume that isn't the case.> > Anyway, this is where I am with ldn. I love the results, hate the > side effects that my neurologist obviously feels is related to the > medication.> > Good luck all of you, and I will post on Friday after I have spoken > at length with my neurologist.> > Be Well,> > > > ps--I want ldn to be successful...but it doesn't help the cause when > people are berated for having difficulty. Can I suggest a common > expression LAY OFF? We all need to learn from each other's > experience, and it doesn't help to be insulting.>