3 mg LDN for 6 days, Should I ask neuro for 4.5mg?

[Guest guest]

I had read that it's better to go right up to 4.5mg of LDN as soon as you can after initiating LDN therapy. I can't, however, remember if I had gotten that info. from a reliable source (which I could present to my neuro) or anecdotally.

I received my first prescription locally for $38. I wanted to get my next from Dr. Skip's pharmacy because of the better price and I could get 3 mos. at a time.. With the time lag that may take, I thought I'd pose this question now. This way I could talk to my neuro (who hasn't displayed much enthusiasm about me using it, or ANY info. about).I started LDN last thursday. The second day I felt (((((ENERGIZED))))). During my pt ritual, I can usually do 15 maybe 20 situps at most . That day I did sixty. I had the same kind of experience on our treadmill. I thought wow this is what I had been hoping for! I really didn't get blown away with excitement though because I had had enough experience with other meds and steroids over the years. The day after that I had a bad day (which almost always occurs after a good day. The rest of the days since then I've felt fatigued as I had before starting LDN.I was hoping that really good day might have been the LDN starting to do good for me, but the dosage wasn't the theraputic level I may need.

Rob Orris

[Guest guest]

we found going starting low and going slow avoids all kind sof problems and issues. Tis information did not just come from out patients but from the doctors that we work with. so thats what we recomend.

This was something we also discussed at the conferance this past year with Dr Boyle and Dr Crowly.

Cyndi

[low dose naltrexone] 3 mg LDN for 6 days, Should I ask neuro for 4.5mg?

I had read that it's better to go right up to 4.5mg of LDN as soon as you can after initiating LDN therapy. I can't, however, remember if I had gotten that info. from a reliable source (which I could present to my neuro) or anecdotally.

I received my first prescription locally for $38. I wanted to get my next from Dr. Skip's pharmacy because of the better price and I could get 3 mos. at a time.. With the time lag that may take, I thought I'd pose this question now. This way I could talk to my neuro (who hasn't displayed much enthusiasm about me using it, or ANY info. about).I started LDN last thursday. The second day I felt (((((ENERGIZED))))). During my pt ritual, I can usually do 15 maybe 20 situps at most . That day I did sixty. I had the same kind of experience on our treadmill. I thought wow this is what I had been hoping for! I really didn't get blown away with excitement though because I had had enough experience with other meds and steroids over the years. The day after that I had a bad day (which almost always occurs after a good day. The rest of the days since then I've felt fatigued as I had before starting LDN.I was hoping that really good day might have been the LDN starting to do good for me, but the dosage wasn't the theraputic level I may need.

Rob Orris

[Guest guest]

Rob:

1. Not everyone experiences symptom relief on LDN and most people

don't experience instant relief. The primary reason to take it is to

prevent disease progression.

2. Do you have MS?

3. Were you experiencing spasticitcy of any sort--stiffness, spasms?

For people who do, Dr. Bihari recommends 3 mg rather than 4.5

[Guest guest]

Rob Orris wrote:

" ...The second day I felt (((((ENERGIZED))))). "

" ...The day after that I had a bad day (which almost always occurs

after a good day. The rest of the days since then I've felt fatigued

as I had before starting LDN. "

Rob,

Many of us have had this happen. What it REALLY seems to be, is that

we want to be able USE UP the increase in energy and still not feel

fatigue. We still have MS, we still have MS fatigue, we still need to

PACE ourselves.

Are you going to bed as early as you did before LDN? Are you getting

as much rest?

It does seem to level off after a while and you WILL have more energy

than before LDN, but an unlimited supply it is not.

[Guest guest]

>

> Rob:

>

> 1. Not everyone experiences symptom relief on LDN and most people

> don't experience instant relief. The primary reason to take it is

to

> prevent disease progression.

>

> 2. Do you have MS?

>

> 3. Were you experiencing spasticitcy of any sort--stiffness,

spasms?

> For people who do, Dr. Bihari recommends 3 mg rather than 4.5

>

>

> Dr. Bihari upped my dose to 4.5, after a year and a half at 3.0. He

said that he was putting all of his patients, with MS, on 4.5.

Thankfully, I've not had a problem.

[Guest guest]

,

I've had ms since 1983 and fibromyalgia since 1998. My hope is that LDN will lessen the spasticity and fatigue. Rob Orris

From: "surffcity" <surffcity@...>Reply- low dose naltrexone low dose naltrexone Subject: [low dose naltrexone] Re: 3 mg LDN for 6 days, Should I ask neuro for 4.5mg?Date: Thu, 28 Sep 2006 04:33:33 -0000>> >> > Rob:> >> > 1. Not everyone experiences symptom relief on LDN and most people> > don't experience instant relief. The primary reason to take it is>to> > prevent disease progression.> >> > 2. Do you have MS?> >> > 3. Were you experiencing spasticitcy of any sort--stiffness,>spasms?> > For people who do, Dr. Bihari recommends 3 mg rather than 4.5> >> > > > Dr. Bihari upped my dose to 4.5, after a year and a half at 3.0. He>said that he was putting all of his patients, with MS, on 4.5.>Thankfully, I've not had a problem. >>>>>>>>>>>>>>>>>>>

[Guest guest]

I'm a little confused about the need to start at a low dosage and work

up gradually when it's already such a low dose! Does anyone else have

a problem understanding that? I am starting at 1.5 mg and working up

gradually. Why is that preferable to starting at 3 when everything

you read says it's safe and free from serious side effects at such a

tiny dose? I would rather have started at 3 since that's a

therapeutic dose, but I won't reach that level for a month. I want to

halt the progression of this MS sooner rather than later! Any

explanations that I've missed? Thanks!

[Guest guest]

Because there are less side effects and better success rate.

cyndi

On Oct 3, 2006, at 12:21 AM, jmattis04 wrote:

> I'm a little confused about the need to start at a low dosage and work

> up gradually when it's already such a low dose! Does anyone else have

> a problem understanding that? I am starting at 1.5 mg and working up

> gradually. Why is that preferable to starting at 3 when everything

> you read says it's safe and free from serious side effects at such a

> tiny dose? I would rather have started at 3 since that's a

> therapeutic dose, but I won't reach that level for a month. I want to

> halt the progression of this MS sooner rather than later! Any

> explanations that I've missed? Thanks!

>

>

>

>

>

>

>

>

[Guest guest]

I think it was a BAD game of TELEPHONE.

I started at 3.0 MG and stayed there... well, more or less. After 300 days I tried 4.5 MG, and after 38 days dropped back to 3.0 MG. Then a few months later tried 4.5 MG again and after 12 days went back to 3.0 and have been at 3.0 ever since.

When we wanted to know how we can TRY 4.5 MG if we're at 3.0, someone suggested getting 1.5 MG Capsules, so you can take TWO 1.5's for 3.0 or THREE 1.5's for 4.5. There was never a thought to take just ONE. Then when people were starting, they got the idea to start at 1.5. I don't know why, but that caught on.

BAD game of telephone.

The IDEA was to use the 1.5s as multiples of 3.0 or 4.5 ONLY.

YMMV, JMHO, IRRC

Personally, I'd start at 3.0, and try 4.5 at some point, but that's up to you.

[low dose naltrexone] Re: 3 mg LDN for 6 days, Should I ask neuro for 4.5mg?

I'm a little confused about the need to start at a low dosage and work up gradually when it's already such a low dose! Does anyone else have a problem understanding that? I am starting at 1.5 mg and working up gradually. Why is that preferable to starting at 3 when everything you read says it's safe and free from serious side effects at such a tiny dose? I would rather have started at 3 since that's a therapeutic dose, but I won't reach that level for a month. I want to halt the progression of this MS sooner rather than later! Any explanations that I've missed? Thanks!

[Guest guest]

Cyndi,

I thought there were no side effects under 3 mg other than restless

sleep, dreaming, or temporary increased stiffness. Apparently 3mg of

naltrexone is a much more powerful dose than one would think, then.

What happens when a drug addict uses naltrexone? Do they start slow

and work up? Or does it work differently because the whole premise is

different? Thanks so much!

[Guest guest]

Yep, agree! In fact I am sure I read something on here not long ago

which tended to suggest that the people who only started on 1.5mg were

in general the ones who had most problems with stiffness at the proper

doses.

LarryGC wrote:

> I think it was a BAD game of TELEPHONE.

>

> I started at 3.0 MG and stayed there... well, more or less. After 300

> days I tried 4.5 MG, and after 38 days dropped back to 3.0 MG. Then a

> few months later tried 4.5 MG again and after 12 days went back to 3.0

> and have been at 3.0 ever since.

>

> When we wanted to know how we can TRY 4.5 MG if we're at 3.0, someone

> suggested getting 1.5 MG Capsules, so you can take TWO 1.5's for 3.0

> or THREE 1.5's for 4.5. There was never a thought to take just ONE.

> Then when people were starting, they got the idea to start at 1.5. I

> don't know why, but that caught on.

>

> BAD game of telephone.

>

> The IDEA was to use the 1.5s as multiples of 3.0 or 4.5 ONLY.

>

> YMMV, JMHO, IRRC

>

> Personally, I'd start at 3.0, and try 4.5 at some point, but that's up

> to you.

>

> * [low dose naltrexone] Re: 3 mg LDN for 6 days, Should I

> ask neuro for 4.5mg?

>

> I'm a little confused about the need to start at a low dosage and

> work

> up gradually when it's already such a low dose! Does anyone else

> have

> a problem understanding that? I am starting at 1.5 mg and working up

> gradually. Why is that preferable to starting at 3 when everything

> you read says it's safe and free from serious side effects at such a

> tiny dose? I would rather have started at 3 since that's a

> therapeutic dose, but I won't reach that level for a month. I

> want to

> halt the progression of this MS sooner rather than later! Any

> explanations that I've missed? Thanks!

>

[Guest guest]

I also started at 3 mg. and I was fine--in fact, more than fine.

When I tried to go up to 4.5 I had terrible leg numbness, and later

3.5 gave me the same result. When I went back to 3.0 I was fine

again both times. No doctor ever told me to start at 1.5 so I would

disregard that advice and go to 3.0. Just be aware that you may

have problems if you go higher and then go back to 3.0 instead of

giving up.

Joyce

>

> > I think it was a BAD game of TELEPHONE.

> >

> > I started at 3.0 MG and stayed there... well, more or less.

After 300

> > days I tried 4.5 MG, and after 38 days dropped back to 3.0 MG.

Then a

> > few months later tried 4.5 MG again and after 12 days went back

to 3.0

> > and have been at 3.0 ever since.

> >

> > When we wanted to know how we can TRY 4.5 MG if we're at 3.0,

someone

> > suggested getting 1.5 MG Capsules, so you can take TWO 1.5's for

3.0

> > or THREE 1.5's for 4.5. There was never a thought to take just

ONE.

> > Then when people were starting, they got the idea to start at

1.5. I

> > don't know why, but that caught on.

> >

> > BAD game of telephone.

> >

> > The IDEA was to use the 1.5s as multiples of 3.0 or 4.5 ONLY.

> >

> > YMMV, JMHO, IRRC

> >

> > Personally, I'd start at 3.0, and try 4.5 at some point, but

that's up

> > to you.

> >

> > * [low dose naltrexone] Re: 3 mg LDN for 6 days,

Should I

> > ask neuro for 4.5mg?

> >

> > I'm a little confused about the need to start at a low

dosage and

> > work

> > up gradually when it's already such a low dose! Does anyone

else

> > have

> > a problem understanding that? I am starting at 1.5 mg and

working up

> > gradually. Why is that preferable to starting at 3 when

everything

> > you read says it's safe and free from serious side effects

at such a

> > tiny dose? I would rather have started at 3 since that's a

> > therapeutic dose, but I won't reach that level for a month.

I

> > want to

> > halt the progression of this MS sooner rather than later!

Any

> > explanations that I've missed? Thanks!

> >

>

[Guest guest]

the entire premise different. Its a whole different drug at the low

dose. I think that I used the wrong word. A better word is

tolerance. Understand restless, weird dreams and temp increased

stiffness is enough for someone to say forget it and stop. Skip and

his students looked at side effects and came up with a huge amount

data. There were very few sides. Many people asked " Am I suppose to

have side effects. " But people stopped with all kinds of reasons from

bad dreams to their Dr told them to. I believe and I could be wrong

that Dr Bihari suggested that people start at 3 and then up to 4.5.

Coffee hasn't kicked in yet. Skip with some of the doctors that we

work with came up with this protocol and it is really making a

difference in the long term.

So my suggestion is if your tolerating the it at 3 stay there for a

month and then go up to 4.5

cyndi

brote:

> Cyndi,

> I thought there were no side effects under 3 mg other than restless

> sleep, dreaming, or temporary increased stiffness. Apparently 3mg of

> naltrexone is a much more powerful dose than one would think, then.

> What happens when a drug addict uses naltrexone? Do they start slow

> and work up? Or does it work differently because the whole premise is

> different? Thanks so much!

>

>

>

>

>

>

[Guest guest]

maybe it was at one time but thats not true.  It has been actually observed that most people tolerate it better if they start low and work up slowly.  so to clarify I know there will be a bunch of  folks who did it differently.  generally.cyndiOn Oct 3, 2006, at 12:40 AM, LarryGC wrote:I think it was a BAD game of TELEPHONE. I started at 3.0 MG and stayed there... well, more or less.  After 300 days I tried 4.5 MG, and after 38 days dropped back to 3.0 MG.  Then a few months later tried 4.5 MG again and after 12 days went back to 3.0 and have been at 3.0 ever since. When we wanted to know how we can TRY 4.5 MG if we're at 3.0, someone suggested getting 1.5 MG Capsules, so you can take TWO 1.5's for 3.0 or THREE 1.5's for 4.5.  There was never a thought to take just ONE.   Then when people were starting, they got the idea to start at 1.5.  I don't know why, but that caught on. BAD game of telephone. The IDEA was to use the 1.5s as multiples of 3.0 or 4.5 ONLY. YMMV, JMHO, IRRC Personally, I'd start at 3.0, and try 4.5 at some point, but that's up to you.

[Guest guest]

Whatever works... I'm glad I did it how I did it.. as I said YMMV, JMHO That's how things work... one thing leads to another.

JOMO & E

or JOPO & E if you want to be PC

Re: [low dose naltrexone] Re: 3 mg LDN for 6 days, Should I ask neuro for 4.5mg?

maybe it was at one time but thats not true. It has been actually observed that most people tolerate it better if they start low and work up slowly. so to clarify I know there will be a bunch of folks who did it differently. generally.

cyndi

On Oct 3, 2006, at 12:40 AM, LarryGC wrote:

I think it was a BAD game of TELEPHONE.

I started at 3.0 MG and stayed there... well, more or less. After 300 days I tried 4.5 MG, and after 38 days dropped back to 3.0 MG. Then a few months later tried 4.5 MG again and after 12 days went back to 3.0 and have been at 3.0 ever since.

When we wanted to know how we can TRY 4.5 MG if we're at 3.0, someone suggested getting 1.5 MG Capsules, so you can take TWO 1.5's for 3.0 or THREE 1.5's for 4.5. There was never a thought to take just ONE. Then when people were starting, they got the idea to start at 1.5. I don't know why, but that caught on.

BAD game of telephone.

The IDEA was to use the 1.5s as multiples of 3.0 or 4.5 ONLY.

YMMV, JMHO, IRRC

Personally, I'd start at 3.0, and try 4.5 at some point, but that's up to you.

[Guest guest]

I loved all the early day 'side effects', once I was more secure and less fearful of what I was doing. Those spasms where it feels like you're getting little punches from inside-out, usually in the same spot for a few moments, and then never at THAT spot again. Close, but not exactly near. Not sure if that's an LDN side effect, or PWMS on LDN s-e, but it was weird and fearful before I realized what was going on. Finally gave up spooking myself and just let it and my body do what it knew better than me worrying.

What's that old saying about the weather in ?_______? ? you don't like it, wait TEN minutes and it'll change?

Same thing with MS... just gotta roll with the sx go 'round.

Re: [low dose naltrexone] Re: 3 mg LDN for 6 days, Should I ask neuro for 4.5mg?

the entire premise different. Its a whole different drug at the low dose. I think that I used the wrong word. A better word is tolerance. Understand restless, weird dreams and temp increased stiffness is enough for someone to say forget it and stop. Skip and his students looked at side effects and came up with a huge amount data. There were very few sides. Many people asked "Am I suppose to have side effects." But people stopped with all kinds of reasons from bad dreams to their Dr told them to. I believe and I could be wrong that Dr Bihari suggested that people start at 3 and then up to 4.5. Coffee hasn't kicked in yet. Skip with some of the doctors that we work with came up with this protocol and it is really making a difference in the long term.So my suggestion is if your tolerating the it at 3 stay there for a month and then go up to 4.5cyndi

[Guest guest]

For over a year now, Bernie Bihari has been recommending 3 mg for

people who have experienced or are experiencing spasticity. The

website was amended to reflect that change in his thinking.

For after years on LDN, I asked him if I should increase to 4.5 mg. He

didn't recommend it, since I still have spasticity.