Re: Dose and effects

[Guest guest]

Hi Jan,

It has definately helped with my mood. I have graves disease, and used

to have what was called graves rage, where I would fly into a rage

over the smallest, dumbest things. I haven't had that since I started

25 days ago. I am up to 4.5 mg already though. I do know that for ms,

3.0 mg is the recommended dose.

As far as depression, mine is lifting, and lifting quickly. My 16 year

old daughter is about to take it for obsessive compulsive disorder,

anxiety, and mild depression. All of those are mild to moderate for

her. I will keep everyone posted on how she does. I am excited because

this time she came to me and said she needed something again. When she

was on Celexa, she did not want to take it.

As far as sleep goes, I was affected the first couple of nights. And

my biggest problems arise from lack of quality sleep. This is why I

decided to increase so quickly. I could not handle sleep disturbances

with every increase. I only had it for the first couple of days, but I

increased to the 4.5 over about 2 weeks.

I do not know anything about pain relief.

Some people notice the benefits immediately, some not until 6 months

after starting. Just remember, the purpose of this drug is to stop

progression of the autoimmune disease. Not everyone will experience

the above mentioned benefits.

Hope this helps,

Saundra

>

> I didn't know what to put in the subject line, but what I am trying

> to ask is how many felt these wonderful effects they're mentioning at

> 3mg? I don't seem to be having any and was wondering if maybe you

> experienced them after getting up to 4.5mg.

>

> Also, I am a bit confused. I know it is supposed to help produce

> more endorphins and it is supposed to help regulate your immune

> system. I know endorphins are supposed to be pain relieving. Any

> with lots of pain relief from the ldn? I sure am looking fwd to

> that! Does it matter what the pain is from? Mine is from various

> problems, but may all be Lyme related. Currently, the worst is

> tendinopathy in my L. shoulder and a focal tear. I have an appt.

> with an ortho. surgeon 4/1.

>

> How is it supposed to help with sleep? Is it possible that when it

> disrupts the normal endorphin making cycle to have insomnia or worse

> pain then? If so, I suppose eventually it will go away?

>

> I know, too, that endorphins (at least beta-endorphins) are supposed

> to help with moods. Is everybody or anybody that has experienced

> depression,anxiety,or moodiness, experience improvement?

>

> Sorry folks if I am repeating myself, I am just looking for hope. I

> am at my worse ever and I need something to hope for. I realize I

> have only been on it 12 days and of course, I am willing to give it

> longer, it's just that I read so many having seemingly immediate

> results and I was kind of hoping for the same.

>

> jan

>

[Guest guest]

Thanks, Saundra. Your last line is depressing, because it always

seems that I have the worst luck. I had a Reveal ILR (an implanted

heart monitor) and I am the only one they ever saw have a reaction to

it like I did. I get the weirdest side effects to so many meds, that

I don't even list them on my med sheet that I take to my drs'

visits. *sigh*

I have sleep disorders, so far I don't notice the ldn making them

worse. But how would I know, I am so messed up? I have sleep apnea,

alpha-intrusive sleep (aka alpha anomoly (sp), and insomnia. The

insomnia seems to come and go with the ups and downs of my Lyme

rollercoaster.

I don't believe I have major depression, but not seeing anyone

getting better with their Lyme treatment is causing me to get

depressed. Plus that my drs. let the me get so advanced with it. It

took a friend educating me to get a diagnosis, not a dr. educating

himself, because he was concerned about all the diagnoses I had. The

funny thing is most of my depression, when it is worse is from a meds

side effect. Good grief!

I am getting anxiety from having all the side effects from meds and

my brain not working well (to say the least), but most of all that

things seem to be starting up again with multiple dr. appts. and

tests, more health problems. I wonder if I feel so sick because I am

getting better or worse. I guess many here can relate.

I have an appt. with my LLMD 4/7 and I guess she will up the dose

then to 4.5mg. I sure hope I start getting results like the

wonderful ones you and others have reported. Thank you for sharing

with me. I hope you (and your daughter, when she starts) continue to

get good results!

hugs

>

> Hi Jan,

> It has definately helped with my mood. I have graves disease, and

used

> to have what was called graves rage, where I would fly into a rage

> over the smallest, dumbest things. I haven't had that since I

started

> 25 days ago. I am up to 4.5 mg already though. I do know that for

ms,

> 3.0 mg is the recommended dose.

> As far as depression, mine is lifting, and lifting quickly. My 16

year

> old daughter is about to take it for obsessive compulsive disorder,

> anxiety, and mild depression. All of those are mild to moderate for

> her. I will keep everyone posted on how she does. I am excited

because

> this time she came to me and said she needed something again. When

she

> was on Celexa, she did not want to take it.

> As far as sleep goes, I was affected the first couple of nights. And

> my biggest problems arise from lack of quality sleep. This is why I

> decided to increase so quickly. I could not handle sleep

disturbances

> with every increase. I only had it for the first couple of days,

but I

> increased to the 4.5 over about 2 weeks.

> I do not know anything about pain relief.

> Some people notice the benefits immediately, some not until 6 months

> after starting. Just remember, the purpose of this drug is to stop

> progression of the autoimmune disease. Not everyone will experience

> the above mentioned benefits.

> Hope this helps,

> Saundra

[Guest guest]

Jan,

Don't give up hope, then all is lost. It sounds like you have a

multitude of problems going on. It would stand to reason LDN may take

longer for you since there are many things that need to heal.

Sometimes it can be a very long process, but in the end so well worth

it. I am at my 1 year anniversary for graves disease(GD)diagnosis, and

I am just starting to feel like my old self, but I still have a long,

long way to go. You know, what helped me A LOT was reading the book " A

New Earth...Awakening To Your Life's Purpose. " By Eckhart Tolle. It

really made me realize how much I was associating myself to my

disease, not to who I really am. Anyway, you can email me privately if

you are interested in the story, too long to write here.

sassyfur98@...

Give the sleep some time. I haven't slept through the night in over 20

years before LDN. I still get up once to go to the bathroom, but it is

much better than 3-4 times. I too am hoping I will be able to sleep

through the night regularly like I did shortly after starting LDN. If

not, well, I am happy for the results so far.

Just remember, some people on here it has taken 6-9 months to feel a

difference. At the very least, LDN should help stop the progression of

your disease.

Have you had your thyroid tested?

Saundra

I will be gone until Sunday, so if I don't respond right away, just

hang tight. And smile...it really does help.

> >

> > Hi Jan,

> > It has definately helped with my mood. I have graves disease, and

> used

> > to have what was called graves rage, where I would fly into a rage

> > over the smallest, dumbest things. I haven't had that since I

> started

> > 25 days ago. I am up to 4.5 mg already though. I do know that for

> ms,

> > 3.0 mg is the recommended dose.

> > As far as depression, mine is lifting, and lifting quickly. My 16

> year

> > old daughter is about to take it for obsessive compulsive disorder,

> > anxiety, and mild depression. All of those are mild to moderate for

> > her. I will keep everyone posted on how she does. I am excited

> because

> > this time she came to me and said she needed something again. When

> she

> > was on Celexa, she did not want to take it.

> > As far as sleep goes, I was affected the first couple of nights. And

> > my biggest problems arise from lack of quality sleep. This is why I

> > decided to increase so quickly. I could not handle sleep

> disturbances

> > with every increase. I only had it for the first couple of days,

> but I

> > increased to the 4.5 over about 2 weeks.

> > I do not know anything about pain relief.

> > Some people notice the benefits immediately, some not until 6 months

> > after starting. Just remember, the purpose of this drug is to stop

> > progression of the autoimmune disease. Not everyone will experience

> > the above mentioned benefits.

> > Hope this helps,

> > Saundra

>

[Guest guest]

Jan,

I hope this poem can help you! God Bless!!!

I Believe by

I believe every person has within themselves inexhaustible reserves

of potential they have never even come close to realizing.

I believe each person has far more intelligence than they have ever

used.

I believe each person is more creative than he or she has ever

imagined.

I believe the greatest achievements of your life lie ahead of you.

I believe the happiest moments of your life are yet to come.

I believe the greatest successes you will ever attain are still

waiting for you on the road ahead.

And, I believe through learning and application of what you learn,

you can solve any problem, overcome any obstacle and achieve any goal

that you can set for yourself.

>

> I didn't know what to put in the subject line, but what I am trying

> to ask is how many felt these wonderful effects they're mentioning

at

> 3mg? I don't seem to be having any and was wondering if maybe you

> experienced them after getting up to 4.5mg.

>

> Also, I am a bit confused. I know it is supposed to help produce

> more endorphins and it is supposed to help regulate your immune

> system. I know endorphins are supposed to be pain relieving. Any

> with lots of pain relief from the ldn? I sure am looking fwd to

> that! Does it matter what the pain is from? Mine is from various

> problems, but may all be Lyme related. Currently, the worst is

> tendinopathy in my L. shoulder and a focal tear. I have an appt.

> with an ortho. surgeon 4/1.

>

> How is it supposed to help with sleep? Is it possible that when it

> disrupts the normal endorphin making cycle to have insomnia or

worse

> pain then? If so, I suppose eventually it will go away?

>

> I know, too, that endorphins (at least beta-endorphins) are

supposed

> to help with moods. Is everybody or anybody that has experienced

> depression,anxiety,or moodiness, experience improvement?

>

> Sorry folks if I am repeating myself, I am just looking for hope.

I

> am at my worse ever and I need something to hope for. I realize I

> have only been on it 12 days and of course, I am willing to give it

> longer, it's just that I read so many having seemingly immediate

> results and I was kind of hoping for the same.

>

> jan

>

[Guest guest]

Thank you

> >

> > I didn't know what to put in the subject line, but what I am

trying

> > to ask is how many felt these wonderful effects they're

mentioning

> at

> > 3mg? I don't seem to be having any and was wondering if maybe

you

> > experienced them after getting up to 4.5mg.

> >

> > Also, I am a bit confused. I know it is supposed to help produce

> > more endorphins and it is supposed to help regulate your immune

> > system. I know endorphins are supposed to be pain relieving.

Any

> > with lots of pain relief from the ldn? I sure am looking fwd to

> > that! Does it matter what the pain is from? Mine is from

various

> > problems, but may all be Lyme related. Currently, the worst is

> > tendinopathy in my L. shoulder and a focal tear. I have an appt.

> > with an ortho. surgeon 4/1.

> >

> > How is it supposed to help with sleep? Is it possible that when

it

> > disrupts the normal endorphin making cycle to have insomnia or

> worse

> > pain then? If so, I suppose eventually it will go away?

> >

> > I know, too, that endorphins (at least beta-endorphins) are

> supposed

> > to help with moods. Is everybody or anybody that has experienced

> > depression,anxiety,or moodiness, experience improvement?

> >

> > Sorry folks if I am repeating myself, I am just looking for

hope.

> I

> > am at my worse ever and I need something to hope for. I realize

I

> > have only been on it 12 days and of course, I am willing to give

it

> > longer, it's just that I read so many having seemingly immediate

> > results and I was kind of hoping for the same.

> >

> > jan

> >

>

[Guest guest]

-Saundra,

The recommended dose of LDN is 4.5, but some people cannot

tolerate that so, 3.0 is recommended for those. That is what it says

on the LDN website about M.S.

-- In low dose naltrexone , " Saundra Renz "

<sassyfur98@...> wrote:

>

> Hi Jan,

> It has definately helped with my mood. I have graves disease, and

used

> to have what was called graves rage, where I would fly into a rage

> over the smallest, dumbest things. I haven't had that since I

started

> 25 days ago. I am up to 4.5 mg already though. I do know that for

ms,

> 3.0 mg is the recommended dose.

> As far as depression, mine is lifting, and lifting quickly. My 16

year

> old daughter is about to take it for obsessive compulsive disorder,

> anxiety, and mild depression. All of those are mild to moderate for

> her. I will keep everyone posted on how she does. I am excited

because

> this time she came to me and said she needed something again. When

she

> was on Celexa, she did not want to take it.

> As far as sleep goes, I was affected the first couple of nights. And

> my biggest problems arise from lack of quality sleep. This is why I

> decided to increase so quickly. I could not handle sleep

disturbances

> with every increase. I only had it for the first couple of days,

but I

> increased to the 4.5 over about 2 weeks.

> I do not know anything about pain relief.

> Some people notice the benefits immediately, some not until 6 months

> after starting. Just remember, the purpose of this drug is to stop

> progression of the autoimmune disease. Not everyone will experience

> the above mentioned benefits.

> Hope this helps,

> Saundra

>

>

>

>

> >

> > I didn't know what to put in the subject line, but what I am

trying

> > to ask is how many felt these wonderful effects they're

mentioning at

> > 3mg? I don't seem to be having any and was wondering if maybe

you

> > experienced them after getting up to 4.5mg.

> >

> > Also, I am a bit confused. I know it is supposed to help produce

> > more endorphins and it is supposed to help regulate your immune

> > system. I know endorphins are supposed to be pain relieving.

Any

> > with lots of pain relief from the ldn? I sure am looking fwd to

> > that! Does it matter what the pain is from? Mine is from

various

> > problems, but may all be Lyme related. Currently, the worst is

> > tendinopathy in my L. shoulder and a focal tear. I have an appt.

> > with an ortho. surgeon 4/1.

> >

> > How is it supposed to help with sleep? Is it possible that when

it

> > disrupts the normal endorphin making cycle to have insomnia or

worse

> > pain then? If so, I suppose eventually it will go away?

> >

> > I know, too, that endorphins (at least beta-endorphins) are

supposed

> > to help with moods. Is everybody or anybody that has experienced

> > depression,anxiety,or moodiness, experience improvement?

> >

> > Sorry folks if I am repeating myself, I am just looking for

hope. I

> > am at my worse ever and I need something to hope for. I realize

I

> > have only been on it 12 days and of course, I am willing to give

it

> > longer, it's just that I read so many having seemingly immediate

> > results and I was kind of hoping for the same.

> >

> > jan

> >

>

[Guest guest]

Hi Jan:

I have been on LDN now for 5.5 months. the first month

on 1.5 there really was no change. I then upped the

dosage to 3.0 and felt amazsing. I then jumped after

another month to 4.5 and have had some symptoms for

the last little while, so now I am back at 3.0 and I

am waiting to feel great again. Just give your body

time to adjust to the medication and you should be

fine.

Keep us informed how you are doing. All the best.

--- jan <jpos123@...> wrote:

> I didn't know what to put in the subject line, but

> what I am trying

> to ask is how many felt these wonderful effects

> they're mentioning at

> 3mg? I don't seem to be having any and was

> wondering if maybe you

> experienced them after getting up to 4.5mg.

>

> Also, I am a bit confused. I know it is supposed to

> help produce

> more endorphins and it is supposed to help regulate

> your immune

> system. I know endorphins are supposed to be pain

> relieving. Any

> with lots of pain relief from the ldn? I sure am

> looking fwd to

> that! Does it matter what the pain is from? Mine

> is from various

> problems, but may all be Lyme related. Currently,

> the worst is

> tendinopathy in my L. shoulder and a focal tear. I

> have an appt.

> with an ortho. surgeon 4/1.

>

> How is it supposed to help with sleep? Is it

> possible that when it

> disrupts the normal endorphin making cycle to have

> insomnia or worse

> pain then? If so, I suppose eventually it will go

> away?

>

> I know, too, that endorphins (at least

> beta-endorphins) are supposed

> to help with moods. Is everybody or anybody that

> has experienced

> depression,anxiety,or moodiness, experience

> improvement?

>

> Sorry folks if I am repeating myself, I am just

> looking for hope. I

> am at my worse ever and I need something to hope

> for. I realize I

> have only been on it 12 days and of course, I am

> willing to give it

> longer, it's just that I read so many having

> seemingly immediate

> results and I was kind of hoping for the same.

>

> jan

>

>

________________________________________________________________________________\

____

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[Guest guest]

I felt great effects at 3 mg. and started to regress when I bumped

it up to 4.5 so I am back down to 3 and will stay there.

>

> I didn't know what to put in the subject line, but what I am

trying

> to ask is how many felt these wonderful effects they're mentioning

at

> 3mg? I don't seem to be having any and was wondering if maybe you

> experienced them after getting up to 4.5mg.

>

> Also, I am a bit confused. I know it is supposed to help produce

> more endorphins and it is supposed to help regulate your immune

> system. I know endorphins are supposed to be pain relieving. Any

> with lots of pain relief from the ldn? I sure am looking fwd to

> that! Does it matter what the pain is from? Mine is from various

> problems, but may all be Lyme related. Currently, the worst is

> tendinopathy in my L. shoulder and a focal tear. I have an appt.

> with an ortho. surgeon 4/1.

>

> How is it supposed to help with sleep? Is it possible that when

it

> disrupts the normal endorphin making cycle to have insomnia or

worse

> pain then? If so, I suppose eventually it will go away?

>

> I know, too, that endorphins (at least beta-endorphins) are

supposed

> to help with moods. Is everybody or anybody that has experienced

> depression,anxiety,or moodiness, experience improvement?

>

> Sorry folks if I am repeating myself, I am just looking for hope.

I

> am at my worse ever and I need something to hope for. I realize I

> have only been on it 12 days and of course, I am willing to give

it

> longer, it's just that I read so many having seemingly immediate

> results and I was kind of hoping for the same.

>

> jan

>

[Guest guest]

---Hello,

Iam new and I have taken ldn only 1 month. I have had

no real effects, except more energy and somne moodines, 3mg a day and

I have MS

[Guest guest]

Thanks for the encouragement.

jan

>

> Hi Jan:

>

> I have been on LDN now for 5.5 months. the first month

> on 1.5 there really was no change. I then upped the

> dosage to 3.0 and felt amazsing. I then jumped after

> another month to 4.5 and have had some symptoms for

> the last little while, so now I am back at 3.0 and I

> am waiting to feel great again. Just give your body

> time to adjust to the medication and you should be

> fine.

>

> Keep us informed how you are doing. All the best.

>

>

[Guest guest]

Thanks, to you, too. I will try to be aware of any regress going up.

I am usually very sensitive to meds, that means little doses are needed

or I get yucky side effects (double edged sword). I'm trying to hang

in there and won't give up on the ldn anytime soon, unless I have to.

I am wondering though, about getting Zoloft temp.

jan

>

> I felt great effects at 3 mg. and started to regress when I bumped

> it up to 4.5 so I am back down to 3 and will stay there.

>

[Guest guest]

Hi Jan,

I have the same issues as you, I still have problems with stiffness, something I did not have a problem with before taking LDN. I have tried to go up to 3.5 and 4.5 three times and was so stiff I couldn't move. Now I'm back on 3.0 and am better but still having problems with stiffness and therefore walking. I started on LDN on Nov.2/2007 and am still waiting to feel better. I've also gotten depressed but that's probably due to not being able to move as well as before I started LDN. Everyday I wonder whether I should go back on Betaferon which I had been taking for the last 9 years. I didn't feel great on it but I did walk better and had less fatigue than now. I'm holding out hoping that my body is still adjusting but how how long will it take?! At this point I wonder if I'm one of the few for whom LDN won't work? It's very frustrating and I would appreciate any suggestions. My doctor doesn't know why I have such a problem with stiffness and only suggests to wait some more.

I appreciate the help that Aletha, Dudley, Larry and others have already given me but I'm still not sure about whether LDN is helping me...

Miki -MS

[low dose naltrexone] Re: Dose and effects

Thanks for the encouragement.jan>> Hi Jan:> > I have been on LDN now for 5.5 months. the first month> on 1.5 there really was no change. I then upped the> dosage to 3.0 and felt amazsing. I then jumped after> another month to 4.5 and have had some symptoms for> the last little while, so now I am back at 3.0 and I> am waiting to feel great again. Just give your body> time to adjust to the medication and you should be> fine.> > Keep us informed how you are doing. All the best.> >

[Guest guest]

Hi Miki,

All I can say about the stiffness is that I am experiencing that (and

myoclonus) since starting the ldn. I haven't had these problems for

a few yrs. or better. I was misdiag. with MS at one time and

spasticity was a symptom and that is what this stiffness feels like.

The myoclonus happened around the same time, but I believed it was my

seizures meds that were doing it and I am guessing it was partly the

cause. Most of it stopped when I stopped the seizure meds (only

needed to be on them for 3 yrs. Yay!) So, I don't know what is up

with that. I do feel the stiffness is getting to be less of a

problem, much less and I've only been on ldn since 3/13.

hugs

>

> Hi Jan,

> I have the same issues as you, I still have problems with

stiffness, something I did not have a problem with before taking LDN.

I have tried to go up to 3.5 and 4.5 three times and was so stiff I

couldn't move. Now I'm back on 3.0 and am better but still having

problems with stiffness and therefore walking. I started on LDN on

Nov.2/2007 and am still waiting to feel better. I've also gotten

depressed but that's probably due to not being able to move as well

as before I started LDN. Everyday I wonder whether I should go back

on Betaferon which I had been taking for the last 9 years. I didn't

feel great on it but I did walk better and had less fatigue than now.

I'm holding out hoping that my body is still adjusting but how how

long will it take?! At this point I wonder if I'm one of the few for

whom LDN won't work? It's very frustrating and I would appreciate any

suggestions. My doctor doesn't know why I have such a problem with

stiffness and only suggests to wait some more.

> I appreciate the help that Aletha, Dudley, Larry and others have

already given me but I'm still not sure about whether LDN is helping

me...

> Miki -MS

>

[Guest guest]

,

Do you have MS? If so then I don't mean to be critical as I am sure

it's scary, but I am just wondering if in dropping back to 3.0 because

you felt some symptoms you are actually shooting yourself in the foot.

A number of the most improved MSers on here have experienced an initial

return of symptoms before those symptoms effectively reversed and

disappeared for good. As discussed on here many times over the years Dr

Lawrence even went as far as explaining why/how this occurred so that

people would not be afraid to try to persevere. Or were these new symptoms?

Suzzie B wrote:

> Hi Jan:

>

> I have been on LDN now for 5.5 months. the first month

> on 1.5 there really was no change. I then upped the

> dosage to 3.0 and felt amazsing. I then jumped after

> another month to 4.5 and have had some symptoms for

> the last little while, so now I am back at 3.0 and I

> am waiting to feel great again. Just give your body

> time to adjust to the medication and you should be

> fine.

>

> Keep us informed how you are doing. All the best.

>

>

[Guest guest]

Hi Jan and Miki

My advice would be to give the LDN at least 9 months, and up to a year. I didn't have any relief except slight bladder control until after 8 months and the stiffness lasted longer, but it finally stopped, most of the time. I was taking Baclofen 3 x a day to help w/ stiffness.

It's been 4 years and I still am stiff occasionally some mornings right after waking, and even though i can't walk, once I'm up in my wheelchair, I'm ok. I very rarely take a baclofen and if I do, it's only one.

I tested positive for lyme, but I may have lyme-induced MS.

Arlene

-------------- Original message -------------- From: "jan" <jpos123@...>

Hi Miki,All I can say about the stiffness is that I am experiencing that (and myoclonus) since starting the ldn. I haven't had these problems for a few yrs. or better. I was misdiag. with MS at one time and spasticity was a symptom and that is what this stiffness feels like. The myoclonus happened around the same time, but I believed it was my seizures meds that were doing it and I am guessing it was partly the cause. Most of it stopped when I stopped the seizure meds (only needed to be on them for 3 yrs. Yay!) So, I don't know what is up with that. I do feel the stiffness is getting to be less of a problem, much less and I've only been on ldn since 3/13.hugs>> Hi Jan, > I have the same issues as you, I still have problems with stiffness, something I did not have a problem with before taking LDN. I have tried to go up to 3.5 and 4.5 three times and was so stiff I couldn't move. Now I'm back on 3.0 and am better but still having problems with stiffness and therefore walking. I started on LDN on Nov.2/2007 and am still waiting to feel better. I've also gotten depressed but that's probably due to not being able to move as well as before I started LDN. Everyday I wonder whether I should go back on Betaferon which I had been taking for the last 9 years. I didn't feel great on it but I did walk better and had less fatigue than now. I'm holding out hoping that my body is still adjusting but how how long will it take?! At this point I wonder if I'm one of the few for whom LDN won't work? It's very frustrating and I would appreciate any suggestions. My doctor doesn't know why I have such a problem with stiffness and only suggests to wait some more.> I appreciate the help that Aletha, Dudley, Larry and others have already given me but I'm still not sure about whether LDN is helping me...> Miki -MS>

[Guest guest]

>

> ,

>

> Do you have MS? If so then I don't mean to be critical as I am sure

> it's scary, but I am just wondering if in dropping back to 3.0

because

> you felt some symptoms you are actually shooting yourself in the

foot.

> A number of the most improved MSers on here have experienced an

initial

> return of symptoms before those symptoms effectively reversed and

> disappeared for good. As discussed on here many times over the

years Dr

> Lawrence even went as far as explaining why/how this occurred so

that

> people would not be afraid to try to persevere. Or were these new

symptoms?

>

>

==========

I see so many do this when actually the adverse or increased symptoms

could be a fantastic sign of better health down the road.

I started at 4.5mg and yes siree I had adverse symptoms for 3 solid

months after starting LDN but they all faded away. I guess my disease

state was so bad at the time that those adverse symptoms were minor

compared to what the MS was actually causing. I was to the point that

if LDN killed me, well...that would have been a blessing at that

time. To look at me today almost 5 years later, a person who'd never

seen me before would never believe the state I was in 4 1/2 years

ago. Of course LDN halted my progressive MS disease progression but

I've had to do my part too and do things like, change how I eat and

exercise in the pool to work out of the mobility scooter, etc to

compliment what LDN gave me.

[Guest guest]

Thanks for the information Arlene, I really hope the stiffness goes away soon, especially since I didn't have this problem before, so I know it's due to the LDN. I also have myoclonus, only once in a while, but didn't have it before. the only good thing I feel since on LDN is that my head feels less "cloudy", I feel more alert, but it is probably also due to getting off all the other medication. I have hope that at some point soon I'll feel much better since so many people here are writing how LDN gave them their life back and are doing really well on LDN... let me know how you are doing Jan. best, Miki

Re: [low dose naltrexone] Re: Dose and effects

Hi Jan and Miki

My advice would be to give the LDN at least 9 months, and up to a year. I didn't have any relief except slight bladder control until after 8 months and the stiffness lasted longer, but it finally stopped, most of the time. I was taking Baclofen 3 x a day to help w/ stiffness.

It's been 4 years and I still am stiff occasionally some mornings right after waking, and even though i can't walk, once I'm up in my wheelchair, I'm ok. I very rarely take a baclofen and if I do, it's only one.

I tested positive for lyme, but I may have lyme-induced MS.

Arlene

-------------- Original message -------------- From: "jan" <jpos123 >

Hi Miki,All I can say about the stiffness is that I am experiencing that (and myoclonus) since starting the ldn. I haven't had these problems for a few yrs. or better. I was misdiag. with MS at one time and spasticity was a symptom and that is what this stiffness feels like. The myoclonus happened around the same time, but I believed it was my seizures meds that were doing it and I am guessing it was partly the cause. Most of it stopped when I stopped the seizure meds (only needed to be on them for 3 yrs. Yay!) So, I don't know what is up with that. I do feel the stiffness is getting to be less of a problem, much less and I've only been on ldn since 3/13.hugs>> Hi Jan, > I have the same issues as you, I still have problems with stiffness, something I did not have a problem with before taking LDN. I have tried to go up to 3.5 and 4.5 three times and was so stiff I couldn't move. Now I'm back on 3.0 and am better but still having problems with stiffness and therefore walking. I started on LDN on Nov.2/2007 and am still waiting to feel better. I've also gotten depressed but that's probably due to not being able to move as well as before I started LDN. Everyday I wonder whether I should go back on Betaferon which I had been taking for the last 9 years. I didn't feel great on it but I did walk better and had less fatigue than now. I'm holding out hoping that my body is still adjusting but how how long will it take?! At this point I wonder if I'm one of the few for whom LDN won't work? It's very frustrating and I would appreciate any suggestions. My doctor doesn't know why I have such a problem with stiffness and only suggests to wait some more.> I appreciate the help that Aletha, Dudley, Larry and others have already given me but I'm still not sure about whether LDN is helping me...> Miki -MS>

[Guest guest]

>

> I didn't know what to put in the subject line, but what I am trying

> to ask is how many felt these wonderful effects they're mentioning at

> 3mg? I don't seem to be having any and was wondering if maybe you

> experienced them after getting up to 4.5mg.

>

> Also, I am a bit confused. I know it is supposed to help produce

> more endorphins and it is supposed to help regulate your immune

> system. I know endorphins are supposed to be pain relieving. Any

> with lots of pain relief from the ldn? I sure am looking fwd to

> that! Does it matter what the pain is from? Mine is from various

> problems, but may all be Lyme related. Currently, the worst is

> tendinopathy in my L. shoulder and a focal tear. I have an appt.

> with an ortho. surgeon 4/1.

>

> How is it supposed to help with sleep? Is it possible that when it

> disrupts the normal endorphin making cycle to have insomnia or worse

> pain then? If so, I suppose eventually it will go away?

>

> I know, too, that endorphins (at least beta-endorphins) are supposed

> to help with moods. Is everybody or anybody that has experienced

> depression,anxiety,or moodiness, experience improvement?

>

> Sorry folks if I am repeating myself, I am just looking for hope. I

> am at my worse ever and I need something to hope for. I realize I

> have only been on it 12 days and of course, I am willing to give it

> longer, it's just that I read so many having seemingly immediate

> results and I was kind of hoping for the same.

>

> jan

>

Jan:

I am at my 17th day and effects are not showing up significantly

either. I am @ 3mg but started at 1.5 for a week.

I think it is too early; and that it is normal that only people got

the effect they write about it. So maybe for 10 people 4 get quick

effect and will write right away; whil the remaining 6 will write

sporadically when they get the effects...

Just my thoughts;

Cheers!

[Guest guest]

Dear Jan,

As I wrote in the welcome e-mail, everyone is different. I know you want to figure out how LDN works and exactly how and when you will see and get effects, but we just cannot say because everyone one is different and things vary so much for each person. The main thing is to relax (as best as possible) and wait and see. If you are doing fine with side effects on 3.0mg you might wish to up the dose to 4.5mg. In fact Dr. Bihari feels that starting and staying at 4.5 is the best thing, and only going down to 3.0 if the spasms or side effects are too difficult to work through. That is the way everyone had started in the past (at 4.5mg). Later someone started suggesting starting at lower amounts and increasing slowly in order to get your body used to it. I am not honestly sure if that is best or not. Perhaps we can take a poll and get a more definate idea of whether starting off on 4.5 or starting at 1.5 seems to be more sucessful.

I will send you some saved posts from our chat site regarding pain. Hopefully they will help.

Please keep us posted on how you are doing.

Aletha

"I didn't know what to put in the subject line, but what I am trying > to ask is how many felt these wonderful effects they're mentioning at > 3mg? I don't seem to be having any and was wondering if maybe you > experienced them after getting up to 4.5mg."

[Guest guest]

Hi Jan,

I'm on day 27 and haven't seen change in my MS. It has helped my

colitis and dry eye some but still a little problem with them.

I think following the BBD (Best Bet Diet from Dr. Embury's website)

helps also.

Betty

[Guest guest]

I remember reading at one time that you had to go through all of your symptoms before getting well? I'm not sure how true that was?

Miki have you been tested for Lyme? It concerns me that you are having depression while on LDN. Thats what led me to my dx off Lyme when earlier I was dxd with MS. Lyme can mimic MS down to the plaques on an mri. You need to be tested at a good lab such as Igenex.

Hugs > >> > Hi Jan, > > I have the same issues as you, I still have problems with > stiffness, something I did not have a problem with before taking LDN. > I have tried to go up to 3.5 and 4.5 three times and was so stiff I > couldn't move. Now I'm back on 3.0 and am better but still having > problems with stiffness and therefore walking. I started on LDN on > Nov.2/2007 and am still waiting to feel better. I've also gotten > depressed but that's probably due to not being able to move as well > as before I started LDN. Everyday I wonder whether I should go back > on Betaferon which I had been taking for the last 9 years. I didn't > feel great on it but I did walk better and had less fatigue than now. > I'm holding out hoping that my body is still adjusting but how how > long will it take?! At this point I wonder if I'm one of the few for > whom LDN won't work? It's very frustrating and I would appreciate any > suggestions. My doctor doesn't know why I have such a problem with > stiffness and only suggests to wait some more.> > I appreciate the help that Aletha, Dudley, Larry and others have > already given me but I'm still not sure about whether LDN is helping > me...> > Miki -MS> >>

[Guest guest]

Hi Aletha,

I am a new LDN user. Started with 4.5 mg(Skips) a month ago right out of the box. First night's sleep was best that I can remember and it remains that way. No bad side effects so far. I am being treated for early stage prostate cancer by my doctor. Since I am 73 surgery and radiation are not possible and LDN is my only treatment at this time. My only other health problem is glaucoma. Last week it was a surprise to find my eye pressure had dropped from 26/20 to 14/13!

I have learned a lot from reading your posts the last month. Thank you all so much. Are there other prostate cancer patients on this site?

Phil Flournoy

Re: [low dose naltrexone] Re: Dose and effects

Dear Jan,

As I wrote in the welcome e-mail, everyone is different. I know you want to figure out how LDN works and exactly how and when you will see and get effects, but we just cannot say because everyone one is different and things vary so much for each person. The main thing is to relax (as best as possible) and wait and see. If you are doing fine with side effects on 3.0mg you might wish to up the dose to 4.5mg. In fact Dr. Bihari feels that starting and staying at 4.5 is the best thing, and only going down to 3.0 if the spasms or side effects are too difficult to work through. That is the way everyone had started in the past (at 4.5mg). Later someone started suggesting starting at lower amounts and increasing slowly in order to get your body used to it. I am not honestly sure if that is best or not. Perhaps we can take a poll and get a more definate idea of whether starting off on 4.5 or starting at 1.5 seems to be more sucessful.

I will send you some saved posts from our chat site regarding pain. Hopefully they will help.

Please keep us posted on how you are doing.

Aletha

"I didn't know what to put in the subject line, but what I am trying > to ask is how many felt these wonderful effects they're mentioning at > 3mg? I don't seem to be having any and was wondering if maybe you > experienced them after getting up to 4.5mg."

[Guest guest]

Hi Phil,

What a nice side effect that it helped with your glaucoma. May I have your permission to save and share your post with others that inquire about glaucoma?

I will send you what I have saved in regards to prostate cancer. I would look into taking Alpha Lipoic Acid as well. I think I have already sent you a copy of the welcome e-mail. If not please let me know.

My best

Aletha

Re: [low dose naltrexone] Re: Dose and effects

Dear Jan,

As I wrote in the welcome e-mail, everyone is different. I know you want to figure out how LDN works and exactly how and when you will see and get effects, but we just cannot say because everyone one is different and things vary so much for each person. The main thing is to relax (as best as possible) and wait and see. If you are doing fine with side effects on 3.0mg you might wish to up the dose to 4.5mg. In fact Dr. Bihari feels that starting and staying at 4.5 is the best thing, and only going down to 3.0 if the spasms or side effects are too difficult to work through. That is the way everyone had started in the past (at 4.5mg). Later someone started suggesting starting at lower amounts and increasing slowly in order to get your body used to it. I am not honestly sure if that is best or not. Perhaps we can take a poll and get a more definate idea of whether starting off on 4.5 or starting at 1.5 seems to be more sucessful.

I will send you some saved posts from our chat site regarding pain. Hopefully they will help.

Please keep us posted on how you are doing.

Aletha

"I didn't know what to put in the subject line, but what I am trying > to ask is how many felt these wonderful effects they're mentioning at > 3mg? I don't seem to be having any and was wondering if maybe you > experienced them after getting up to 4.5mg."

[Guest guest]

Thanks Phil,

I will start a new category called beginning dosage. Can everyone else send me your dosage beginning with and how it worked out? I will send the questions in another e-mail.

Thanks

Aletha

Re: [low dose naltrexone] Re: Dose and effects

Dear Jan,

As I wrote in the welcome e-mail, everyone is different. I know you want to figure out how LDN works and exactly how and when you will see and get effects, but we just cannot say because everyone one is different and things vary so much for each person. The main thing is to relax (as best as possible) and wait and see. If you are doing fine with side effects on 3.0mg you might wish to up the dose to 4.5mg. In fact Dr. Bihari feels that starting and staying at 4.5 is the best thing, and only going down to 3.0 if the spasms or side effects are too difficult to work through. That is the way everyone had started in the past (at 4.5mg). Later someone started suggesting starting at lower amounts and increasing slowly in order to get your body used to it. I am not honestly sure if that is best or not. Perhaps we can take a poll and get a more definate idea of whether starting off on 4.5 or starting at 1.5 seems to be more sucessful.

I will send you some saved posts from our chat site regarding pain. Hopefully they will help.

Please keep us posted on how you are doing.

Aletha

"I didn't know what to put in the subject line, but what I am trying > to ask is how many felt these wonderful effects they're mentioning at > 3mg? I don't seem to be having any and was wondering if maybe you > experienced them after getting up to 4.5mg."

[Guest guest]

Hi ,

I was tested twice for Lyme, once in the US and the second time here in Spain and both times they said it was negative. I don't know what test they used , this was in 1992.

I'm really hoping that I am going thru the symptoms and it will pass soon! meanwhile I will try other ways of relief and see if something helps.

thanks,

Miki

[low dose naltrexone] Re: Dose and effects

I remember reading at one time that you had to go through all of your symptoms before getting well? I'm not sure how true that was?

Miki have you been tested for Lyme? It concerns me that you are having depression while on LDN. Thats what led me to my dx off Lyme when earlier I was dxd with MS. Lyme can mimic MS down to the plaques on an mri. You need to be tested at a good lab such as Igenex.

Hugs > >> > Hi Jan, > > I have the same issues as you, I still have problems with > stiffness, something I did not have a problem with before taking LDN. > I have tried to go up to 3.5 and 4.5 three times and was so stiff I > couldn't move. Now I'm back on 3.0 and am better but still having > problems with stiffness and therefore walking. I started on LDN on > Nov.2/2007 and am still waiting to feel better. I've also gotten > depressed but that's probably due to not being able to move as well > as before I started LDN. Everyday I wonder whether I should go back > on Betaferon which I had been taking for the last 9 years. I didn't > feel great on it but I did walk better and had less fatigue than now. > I'm holding out hoping that my body is still adjusting but how how > long will it take?! At this point I wonder if I'm one of the few for > whom LDN won't work? It's very frustrating and I would appreciate any > suggestions. My doctor doesn't know why I have such a problem with > stiffness and only suggests to wait some more.> > I appreciate the help that Aletha, Dudley, Larry and others have > already given me but I'm still not sure about whether LDN is helping > me...> > Miki -MS> >>