Re: I was taking too low of a dosage and I was not protected.

[Guest guest]

<I told Dr. B that we need direction and he did say that going off

LDN for a day or so is a wrong thing to do.>

I understand that Dr.L in the UK, does advocate a break for a few

days, every 15 days or so.

Aegis believes that taking a break is the right thing to do, infact

Aegis extends Dr.L's approach and takes LDN only M-F, 5 days/week.

No one knows which approach is better, the argument for a break is

that it allows the cells to rejuvenate, as opposed to keeping them

in a perpetual cloud of LDN. Afterall most people will take LDN for

30-50 years or so. 50 years of suppressing or activating various

processes can have unexpected and unanticipated effects on the brain

and elsewhere. To avoid scaring you, Aegis avoids speculating on

these effects.

The argument against a break is that, the nasties might get the

upper hand when off LDN.

Atleast, in the early stages the good guys outnumber the nasties,

while this ratio is expected to change as the disease progresses.

If this reasoning is correct, a compromise solution would be to take

LDN all year round, only if you have advanced disease.

These are issues which can only be determined by a clinical trial.

So lets all work towards that goal.

Aegis

[Guest guest]

I'm glad to see I'm not crazy or alone. My legs also got stiffer on

3.0 so I ordered 1.5. I'm still stiff, but not as much. I'm trying

LDN for ALS,and no one to my knowledge has used it for this disease.

You're absolutely right about needing clinical trials and more

direction. We're all going off on our own, experimenting with LDN,

and not really knowing what we're doing. Some have success on one

dose, others on another dose. It's very frustrating.

Edith

> Hi all..................have not posted in a while but I felt that

I should.

> Well, been on LDN for 6 months. Started with 1.5 then 3.0, what I

> experienced on 1.5 I lost on 3.0. So I tried 2.0 and that is

where I stayed.

>

> A couple of month back I started to experience a dropped left

foot. I never

> had that before. It was a new symptom. Now when I walk the left

legs drags.

> Talked with Dr. Bihari and he said all should start high. I

should have

> continued with the 3.0 then 4.5. This is really important. Some

of us are on to

> low of a dosage like I was and are not getting protected by the

drug. I told

> Dr. B that we need direction and he did say that going off LDN for

a day or so

> is a wrong thing to do.

>

> Really, do not like how I feel on 3.0 stiff, hard to maneuver.

Well, I need

> to stay at 3.0 and take my zanaflex to subside the spasm. I need

to do this

> in order to have the protection.

>

> We need trails.....we really need direction on how to take the

drug, how much

> and many more questions. I believe in LDN, it is one of the

better options

> that we have.

>

> Cabbie

> -----------------

>

> There are two ways to live your life. One is waiting for a

miracle. The

> other is as though everything is a miracle. "

> - Albert Einstein -

[Guest guest]

I don't understand what you mean( or dr. Bihari means)....

Protected? Protecteds against what?

I've been on LDN for 2 days (I know I'm NOT experienced at all) but

my own intuition tells me to half my dose because I havent sleept in

two days.. I fell unable to sleep.. So tonight I will try and take

1,5 mg instead of 3 mg. and see where it takes me... Anyone who has

any comments to that..

Kind regards Ib

[Guest guest]

How about sticking with your 3 mg. and taking something to help you sleep? Melatonin is good, and won't leave you feeling hungover. You could even take Benadryl just before bedtime. At worst it will make you thirsty, which isn't really a bad thing if it encourages more liquid intake. Many folks go through a few days or a couple of weeks of poor sleep, but you certainly won't hurt yourself by trying melatonin or Benadryl for a few nights.

I still use melatonin on a semi-regular basis, and Benadryl if I'm really beat but yet don't feel sleepy at bedtime.

California MS

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

From: heidiankersen

low dose naltrexone

Sent: Saturday, June 12, 2004 1:26 PM

Subject: [low dose naltrexone] Re: I was taking too low of a dosage and I was not protected.

I don't understand what you mean( or dr. Bihari means)....Protected? Protecteds against what?I've been on LDN for 2 days (I know I'm NOT experienced at all) but my own intuition tells me to half my dose because I havent sleept in two days.. I fell unable to sleep.. So tonight I will try and take 1,5 mg instead of 3 mg. and see where it takes me... Anyone who has any comments to that..Kind regards Ib

[Guest guest]

I have the same question, protected against what??? I started on 5mg---could not sleep at all, very, very stiff in mornings-----went to 3mgs experienced the same things----went to 1.5mgs, that dose was OK. Stayed on 1.5mgs for 5 weeks. Tonight I'm going to increase to 2.5mgs. Will keep everyone posted!!! heidiankersen <hanneheidi4@...> wrote:

I don't understand what you mean( or dr. Bihari means)....Protected? Protecteds against what?I've been on LDN for 2 days (I know I'm NOT experienced at all) but my own intuition tells me to half my dose because I havent sleept in two days.. I fell unable to sleep.. So tonight I will try and take 1,5 mg instead of 3 mg. and see where it takes me... Anyone who has any comments to that..Kind regards Ib

[Guest guest]

one of the side effets of LDN at the beginning is about 2 weeks of

sleepless nights and stiffness. I had stiffness for 87 days before

it finally left. I was switching form 3 to 4.5mg every few days or

so.

> I don't understand what you mean( or dr. Bihari means)....

> Protected? Protecteds against what?

> I've been on LDN for 2 days (I know I'm NOT experienced at all)

but

> my own intuition tells me to half my dose because I havent sleept

in

> two days.. I fell unable to sleep.. So tonight I will try and take

> 1,5 mg instead of 3 mg. and see where it takes me... Anyone who

has

> any comments to that..

> Kind regards Ib

[Guest guest]

Well you wanted comments so for what its worth 1.5 mgs is barely going to get your endophins worked up so I had the same problem and stayed at 4.5 for a month but by changing fillers and taking a mild o/c sleeping pill I got most of my sleep. I also found that I required less sleep during that initial period (which lasted about five months) then I dropped down to three mg.s which is just fine for me.

There was talk awhile back about why change fillers? Well because we can I guess!If you are making your own from pills and water then that means you have less to complain about I guess.

On day 249 still at 3 mgs.for S.P.M.S.

Reg

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

From: low dose naltrexone

Date: 06/12/04 14:27:37

low dose naltrexone

Subject: [low dose naltrexone] Re: I was taking too low of a dosage and I was not protected.

I don't understand what you mean( or dr. Bihari means)....Protected? Protecteds against what?I've been on LDN for 2 days (I know I'm NOT experienced at all) but my own intuition tells me to half my dose because I havent sleept in two days.. I fell unable to sleep.. So tonight I will try and take 1,5 mg instead of 3 mg. and see where it takes me... Anyone who has any comments to that..Kind regards Ib

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi Cabbie,

I am on 4.5 mg of LDN but every once in a while I dump a little out of the capsule. It just seems to give m a boost. I do that for two days and then go back to 4.5. Hope this helps

Marie

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

From: Cabbie54@...

low dose naltrexone ; spotlight_ldn ; cricketshaven

Sent: Saturday, June 12, 2004 3:13 AM

Subject: [low dose naltrexone] I was taking too low of a dosage and I was not protected.

Hi all..................have not posted in a while but I felt that I should. Well, been on LDN for 6 months. Started with 1.5 then 3.0, what I experienced on 1.5 I lost on 3.0. So I tried 2.0 and that is where I stayed. A couple of month back I started to experience a dropped left foot. I never had that before. It was a new symptom. Now when I walk the left legs drags. Talked with Dr. Bihari and he said all should start high. I should have continued with the 3.0 then 4.5. This is really important. Some of us are on to low of a dosage like I was and are not getting protected by the drug. I told Dr. B that we need direction and he did say that going off LDN for a day or so is a wrong thing to do. Really, do not like how I feel on 3.0 stiff, hard to maneuver. Well, I need to stay at 3.0 and take my zanaflex to subside the spasm. I need to do this in order to have the protection.We need trails.....we really need direction on how to take the drug, how much and many more questions. I believe in LDN, it is one of the better options that we have.Cabbie-----------------There are two ways to live your life. One is waiting for a miracle. The other is as though everything is a miracle." - Albert Einstein -

[Guest guest]

I have no trouble sleeping, but am so stiff in the a.m. I went from

3 to 1.5 mg and still feel stiff. I don't know whether to continue

or not, or perhaps increase my Baclofen (I only take 10 mg in the

a.m. and bedtime).

So here we are being our own doctors and guinea pigs. I'm not so

sure this is the right thing to do.

Edith

I don't understand what you

mean( or dr. Bihari means)....

> Protected? Protecteds against what?

> I've been on LDN for 2 days (I know I'm NOT experienced at all)

but

> my own intuition tells me to half my dose because I havent sleept

in

> two days.. I fell unable to sleep.. So tonight I will try and take

> 1,5 mg instead of 3 mg. and see where it takes me... Anyone who

has

> any comments to that..

> Kind regards Ib

>

>

>

[Guest guest]

Everyones oppinion matters cause everyone in this group is kind of

like a doctor to them selfs!!!

And for the record; after reading all of the messages about dozage

last night I decided to stay on 3 mg and so I did. I got 5 hours

sleep and was so happy when I woke up. So tonight I will still take

the 3 mg.

And for the lady how mentioned that I probably was'nt in progress

since I could ask the question about " protection aganist WHAT " I can

tell her that I have over 4 years had 11 attacks in my brain and on

my spinalcourd, so YES i do know about progression!!! But I'm very

fortunate to have benign attacks such as

opticeyeinflammation,sensibilitydisturbance,blatterproblems and

heatproblems!!! I have been going to the best chinise

doctor/akupunkturist ever since i had my diagnose and with his help

and positive thinking and a great family and friends I am very lucky

and fortunate and live a good life.

The reason why I started LDN is because i started producing

antibodies against REBIF 98% so I had to stop that. My neurologist

recommanded copaxone but I wanted to take matters in my own hands

and therefor I'm on LDN and in this group....!

Thats all for now...

Best regards from Ib

And remember to bear with a danish girl and her english spelling...

Thanks