Re: 10 days on VERY low dose Naltrexone

[Guest guest]

Dear Sally,

This reminds me that about 4 years ago a doctor at the Fibro & Fatigue

Center in Denver tried me on Ritalin, for concentration issues. It

didn't help, and it felt so weird that I stopped it after 3 days.

Good luck on your progress, and enjoy whatever book you decide to try!

Marcia on

in Salem, Massachusetts

On Jan 12, 2010, at 9:26 PM, sally_hajkowski wrote:

> Another symptom of CFS is inability to concentrate. Not knowing

> about CFS last spring, my concentration was so bad I convinced my

> PCP I had developed ADD (at 51 years old, sure, it could happen) and

> pleaded with her for ADD meds. I tried Stratera for three weeks with

> no benefit and only weird side effects. If the past couple days are

> any indication of future progress I might even have enough

> concentration to read a book!!

>

> Just feedback from the field. Sally.

>

>

>

[Guest guest]

Sally have you looked up www.ACAM.org for a doctor near you?

Dr Teitlbaums office is within driving distance I think??? I have used the

office often for phone consults with Dr. T's aid, Cheryl---a very caring,

informed person.

God Bless,

Sara

>

> I seem to have CFS brought about by chronic EBV and HHV-6 infections. (Still

looking for a doc in the DC metro area to help with that.) Three years ago I was

diagnosed with adrenal fatigue and hypo thyroid. (No kidding doc! Is that why my

temp is never greater then 96 degrees?) So I'm on HC and thyroid meds. It is not

uncommon for me to take more the 50mg of HC just to make it though my day at

work and my temps and still low and variable. I do not have any FM pain or

related symptoms. CFS is so bad some have suggested I file for disability.

>

> Ten days ago I started on VERY low dose of Naltrexone: .5ml in the evening.

Most nights I slept fine, 2 nights I woke up and couldn't get back to sleep but

I don't know if I can blame the Naltrexone. Two of the past 4 mornings I took

another .5ml.

>

> I'm hoping the terrific results I'm experiencing can be attributed to

Naltexone, though I would think my amounts are too small to have any impact. In

addition to the mental fog lifting I have more physical energy. (Keeping things

in perspective I'm still in really bad shape) After the very first night I woke

up the next morning feeling better. It was a Saturday morning and since I don't

have to force myself to go to work I usually stay in bed until mid-afternoon but

got out of bed at 8:00 AM! And I didn't have to lay down for several hours

after getting out of bed!! Another symptom of CFS is inability to concentrate.

Not knowing about CFS last spring, my concentration was so bad I convinced my

PCP I had developed ADD (at 51 years old, sure, it could happen) and pleaded

with her for ADD meds. I tried Stratera for three weeks with no benefit and only

weird side effects. If the past couple days are any indication of future

progress I might even have enough concentration to read a book!!

>

> Just feedback from the field. Sally

>

[Guest guest]

Great to hear it's doing something for u! I have it here but have still not

tried it yet. Did you mean 0.5mg naltrexone instead of the standard 3mg

reccommended dose?

I also have adrenal insuficiency and am on HC. Ive been on disability for years

though so i do very little work for myself from home. Im in bed most of every

day with only some capacity to do things at night. Im down to about 35-37mg HC,

lowest ive been since starting it. However to do ANYHING even go down the street

with someone in the car etc i have to stress dose alot and will usually end up

on 50mg etc too.

Let us know how u go as the days/weeks go on!

~Chris.

>

> I seem to have CFS brought about by chronic EBV and HHV-6 infections. (Still

looking for a doc in the DC metro area to help with that.) Three years ago I was

diagnosed with adrenal fatigue and hypo thyroid. (No kidding doc! Is that why my

temp is never greater then 96 degrees?) So I'm on HC and thyroid meds. It is not

uncommon for me to take more the 50mg of HC just to make it though my day at

work and my temps and still low and variable. I do not have any FM pain or

related symptoms. CFS is so bad some have suggested I file for disability.

>

> Ten days ago I started on VERY low dose of Naltrexone: .5ml in the evening.

Most nights I slept fine, 2 nights I woke up and couldn't get back to sleep but

I don't know if I can blame the Naltrexone. Two of the past 4 mornings I took

another .5ml.

>

> I'm hoping the terrific results I'm experiencing can be attributed to

Naltexone, though I would think my amounts are too small to have any impact. In

addition to the mental fog lifting I have more physical energy. (Keeping things

in perspective I'm still in really bad shape) After the very first night I woke

up the next morning feeling better. It was a Saturday morning and since I don't

have to force myself to go to work I usually stay in bed until mid-afternoon but

got out of bed at 8:00 AM! And I didn't have to lay down for several hours

after getting out of bed!! Another symptom of CFS is inability to concentrate.

Not knowing about CFS last spring, my concentration was so bad I convinced my

PCP I had developed ADD (at 51 years old, sure, it could happen) and pleaded

with her for ADD meds. I tried Stratera for three weeks with no benefit and only

weird side effects. If the past couple days are any indication of future

progress I might even have enough concentration to read a book!!

>

> Just feedback from the field. Sally

>

[Guest guest]

sally. you might wanna read prof richard deth . " the molecular origins of human

attention.. the dopamine-folate connection. "

he explains why our concentration is so messed up. goes back to the methylation

cycle..dopamine stimulated phospholipid methylation is essential for solid state

signalling.. which is essential for attention-based learning.

basically, if you're methylation cycle is screwed, so is your ability to focus.

cheers

L.

>

> I seem to have CFS brought about by chronic EBV and HHV-6 infections. (Still

looking for a doc in the DC metro area to help with that.) Three years ago I was

diagnosed with adrenal fatigue and hypo thyroid. (No kidding doc! Is that why my

temp is never greater then 96 degrees?) So I'm on HC and thyroid meds. It is not

uncommon for me to take more the 50mg of HC just to make it though my day at

work and my temps and still low and variable. I do not have any FM pain or

related symptoms. CFS is so bad some have suggested I file for disability.

>

> Ten days ago I started on VERY low dose of Naltrexone: .5ml in the evening.

Most nights I slept fine, 2 nights I woke up and couldn't get back to sleep but

I don't know if I can blame the Naltrexone. Two of the past 4 mornings I took

another .5ml.

>

> I'm hoping the terrific results I'm experiencing can be attributed to

Naltexone, though I would think my amounts are too small to have any impact. In

addition to the mental fog lifting I have more physical energy. (Keeping things

in perspective I'm still in really bad shape) After the very first night I woke

up the next morning feeling better. It was a Saturday morning and since I don't

have to force myself to go to work I usually stay in bed until mid-afternoon but

got out of bed at 8:00 AM! And I didn't have to lay down for several hours

after getting out of bed!! Another symptom of CFS is inability to concentrate.

Not knowing about CFS last spring, my concentration was so bad I convinced my

PCP I had developed ADD (at 51 years old, sure, it could happen) and pleaded

with her for ADD meds. I tried Stratera for three weeks with no benefit and only

weird side effects. If the past couple days are any indication of future

progress I might even have enough concentration to read a book!!

>

> Just feedback from the field. Sally

>

[Guest guest]

Yes for starters i'm only taking .5mls! I started taking it in the

evening and after a week tried it off and on in the morning in addition to the

evening. I'm in pretty bad shape and i was afraid starting at a higher does

might make me feel worse so i started on a dose i felt was SO insignificant it

couldn't have any effect - good or bad. So far so good I intend to very slowly

increase. Are you out on disability for CFS? If so, any idea what caused the

CFS? sally

> >

> > I seem to have CFS brought about by chronic EBV and HHV-6 infections. (Still

looking for a doc in the DC metro area to help with that.) Three years ago I was

diagnosed with adrenal fatigue and hypo thyroid. (No kidding doc! Is that why my

temp is never greater then 96 degrees?) So I'm on HC and thyroid meds. It is not

uncommon for me to take more the 50mg of HC just to make it though my day at

work and my temps and still low and variable. I do not have any FM pain or

related symptoms. CFS is so bad some have suggested I file for disability.

> >

> > Ten days ago I started on VERY low dose of Naltrexone: .5ml in the evening.

Most nights I slept fine, 2 nights I woke up and couldn't get back to sleep but

I don't know if I can blame the Naltrexone. Two of the past 4 mornings I took

another .5ml.

> >

> > I'm hoping the terrific results I'm experiencing can be attributed to

Naltexone, though I would think my amounts are too small to have any impact. In

addition to the mental fog lifting I have more physical energy. (Keeping things

in perspective I'm still in really bad shape) After the very first night I woke

up the next morning feeling better. It was a Saturday morning and since I don't

have to force myself to go to work I usually stay in bed until mid-afternoon but

got out of bed at 8:00 AM! And I didn't have to lay down for several hours

after getting out of bed!! Another symptom of CFS is inability to concentrate.

Not knowing about CFS last spring, my concentration was so bad I convinced my

PCP I had developed ADD (at 51 years old, sure, it could happen) and pleaded

with her for ADD meds. I tried Stratera for three weeks with no benefit and only

weird side effects. If the past couple days are any indication of future

progress I might even have enough concentration to read a book!!

> >

> > Just feedback from the field. Sally

> >

>

[Guest guest]

Sally ~ in case you were wondering if feeling good on only 0.5 mg was all in your head, I think NOT. I'm hypersensitive to meds, so started with 1 mg and felt better on day two. In fact, I feel I increased too fast and had either a flu or Herxheimer's last weekend, so I am going back to 1 mg for some time. It's powerful stuff.

[Guest guest]

LDN is one of

the very rare drugs legally listed by the FDA as "Does No Harm".

LDN (in the doses of 1.5mg to as high as 10.0mg) has fewer side effects

per capita than one regular aspirin. LDN has an overall safety record

and adverse side effect record much, much better than regular dose

aspirin (1 - 2 aspirins).

LDN is NOT a "powerful drug".

Full-strength Naltrexone (50 mg - or more than TEN TIMES the levels of

LDN) is considered a very safe medication in its use for aiding in the

withdrawal from opiate addiction and alcohol addiction.

IMO, any "side effects" you are experiencing are "placebo side effects"

and will go away in 2 or 3 days.

And, the bottom line is that LDN will NOT work at shutting off your

Endorphin secretions for those 3 or 4 hours if you are taking doses

LOWER than 1.5 mg (which is the whole mechanism that makes LDN work

"its magic", as when Endorphin production is resumed, it is at a higher

secretion rate in an effort to bring Endorphin levels to "OPTIMUM

levels" -- it cannot take them into excessive levels due to feedback

loop cycles).... But the physiological laws of body functioning

indicates in repeated studies that a minimum of 1.5 mg of LDN is needed

to create that effect.

For some people it will take more... maybe 3.0 mg, maybe 4.5 mg. I felt

very little improvement at 1.5 mg, for example, in fact wondered if I

had gotten scammed with some non LDN caps. Then upon increasing to

3.0mg have felt a strong difference with significant improvement. But I

still feel that I am not getting complete shutdown of the LDN (for

those 3 - 4 hours) yet and am going to be moving to the 4.5 mg level as

soon as my next supply arrives.

At 0.5 mg, you are not getting any true effect from LDN mechanisms at

work... anything that you are (and it will be temporary) feeling is

strictly a placebo effect - and placebo effects do not last

permanently, in fact generally only a few days to at most a few weeks.

Then reality crashes back in.

Sorry, but those are the facts.

As a famous statesman once said in trying to argue a point of fact

across to a fellow diplomat - who was arguing strictly his OPINION,

"Sir, you ARE entitled to your own opinion... but you are NOT entitled

to your own facts".

-- If you forward this correspondence, PLEASE delete ("cut") the forwarding history which includes my email address. Also use the "BCC" feature when addressing emails - unless it is ONLY to me so that the email message does NOT display everyone else's email address. It is simply a COMMON COURTESY to me and to all others who may not wish to have their email addresses sent all over the world. Deleting the history and using the BCC feature also helps prevent Spammers from mining addresses and also prevents viruses from being propagated. Thank you!

[Guest guest]

I have had MS since April 1988 and have been using LDN since March 2005.

I started on 3mgs and three months later went up to 4.5mgs and have been there

ever since. I get my LDN capsules through a neurologists prescription via mail

order from a compounding pharmacy in Florida, USA. Cost is approx. $25.00 for

one month's supply.

The only adverse side-effect I experienced was a very minor sleep disturbance

the first two weeks. To me it was nothing to get frantic about, especially after

dealing with the terrible side-effects of Avonex, Novantrone, high doses of IV

Solumedrol and oral Prednisone.

If not for my back problem I sleep very well these days. I have two herinated

discs and will be getting an epidural steroid injection tomorrow afternoon and

praying it provides some relief for me.

I have tried some of these new ideas such as skipping days and lowering dosage

just to see what happens. I find them a total failure for me. I want to

stop/slow/hopefully reverse disease progression, not just improve symptoms.

I will continue to follow the advice of Dr. Gluck's LDN website and the work of

Dr. Bihari and take the optimal adult dose every night after 9pm and before 3am.

I take my LDN exactly at 10pm every night with a small glass of water. This is

what has been proven to be successful for multiple sclerosis and other serious

illness/disease.

I will also follow the expert advice from Dr. McCandless and understand LDN is

not a stand alone treatment. One must make an effort to improve diet and take

the correct vitamins and supplements.

This is what has worked for me and many others. Unfortunately these older

members do not post here anymore to pass along their experience and knowledge.

Too bad for the newer members desperate for information that will really help

them.

Art

My MS/LDN story:

http://ldn.proboards.com/index.cgi?board=personal & action=display & thread=867

--

LDN is one of the very rare drugs legally listed by the FDA as " Does No Harm " .

LDN (in the doses of 1.5mg to as high as 10.0mg) has fewer side effects per

capita than one regular aspirin. LDN has an overall safety record and adverse

side effect record much, much better than regular dose aspirin (1 - 2 aspirins).

LDN is NOT a " powerful drug " .

Full-strength Naltrexone (50 mg - or more than TEN TIMES the levels of LDN) is

considered a very safe medication in its use for aiding in the withdrawal from

opiate addiction and alcohol addiction.

IMO, any " side effects " you are experiencing are " placebo side effects " and will

go away in 2 or 3 days.

And, the bottom line is that LDN will NOT work at shutting off your Endorphin

secretions for those 3 or 4 hours if you are taking doses LOWER than 1.5 mg

(which is the whole mechanism that makes LDN work " its magic " , as when Endorphin

production is resumed, it is at a higher secretion rate in an effort to bring

Endorphin levels to " OPTIMUM levels " -- it cannot take them into excessive

levels due to feedback loop cycles).... But the physiological laws of body

functioning indicates in repeated studies that a minimum of 1.5 mg of LDN is

needed to create that effect.

For some people it will take more... maybe 3.0 mg, maybe 4.5 mg. I felt very

little improvement at 1.5 mg, for example, in fact wondered if I had gotten

scammed with some non LDN caps. Then upon increasing to 3.0mg have felt a strong

difference with significant improvement. But I still feel that I am not getting

complete shutdown of the LDN (for those 3 - 4 hours) yet and am going to be

moving to the 4.5 mg level as soon as my next supply arrives.

At 0.5 mg, you are not getting any true effect from LDN mechanisms at work...

anything that you are (and it will be temporary) feeling is strictly a placebo

effect - and placebo effects do not last permanently, in fact generally only a

few days to at most a few weeks. Then reality crashes back in.

Sorry, but those are the facts.

As a famous statesman once said in trying to argue a point of fact across to a

fellow diplomat - who was arguing strictly his OPINION, " Sir, you ARE entitled

to your own opinion... but you are NOT entitled to your own facts " .

[Guest guest]

> LDN is one of the very rare drugs legally listed by the FDA as " Does No Harm " .

Do you have a citation for that? It's not that I doubt you- not at all- but that

would be a very useful item with which to present physicians when asking them

for the stuff.

> Full-strength Naltrexone (50 mg - or more than TEN TIMES the levels

> of LDN) is considered a very safe medication in its use for aiding in

> the withdrawal from opiate addiction and alcohol addiction.

Not only that, but the old protocol (don't know if it's current) was to take the

stuff M-W-F, meaning 100 mg on Monday, 100 mg on Wednesday, and 150 mg on Friday

to tide them over the weekend. In particularly large patients, this was doubled-

for up to 300 mg doses for an obese patient on a 3-day weekend.

3 mg just doesn't measure up, ya know?

-AJ

[Guest guest]

The problems some of these people are having at even minuscule amounts

of naltrexone makes me wonder what the heck would happen if they

happened to be drug addicts and were given a full 50mg dose. Eek!!

[Guest guest]

I've often wondered the same thing.

Re: [low dose naltrexone] Re: 10 days on VERY low dose Naltrexone

The problems some of these people are having at even minuscule amounts of

naltrexone makes me wonder what the heck would happen if they happened to be

drug addicts and were given a full 50mg dose. Eek!!

[Guest guest]

I don't see this much criticism and ripping apart in any other meds.

I've never seen any talk of people on just the MS drugs doing this.... just little squirts of avonex, betaseron, rebif and copaxone, building up each day to the full dose, after a year.

I've never seen anyone melt down an aspirin to take more and more with each headache

I'll also bet they START with 5000 MG of Vitamin C when they sneeze, rather han 50 MG

No OTHER med is toyed with like this.

And to think it all started out because people wanted to try 3.0 and go up to 4.5 after a while for ONE issue, got 1.5 MG caps made so 3.0 or 4.5 could be utilized, and then it snowballed into never never land.

[low dose naltrexone] Re: 10 days on VERY low dose Naltrexone

I've often wondered the same thing.Re: [low dose naltrexone] Re: 10 days on VERY low dose Naltrexone The problems some of these people are having at even minuscule amounts of naltrexone makes me wonder what the heck would happen if they happened to be drug addicts and were given a full 50mg dose. Eek!!------------------------------------

[Guest guest]

Larry mentioned "toying" with LDN. I am finding it fascinating to learn how others are improving their results.

I also think that since Big Pharma will likely ignore LDN because there's no $ to be made from it (except possibly to try to suppress it because it works), it really is up to us to do the experiments and report on the results. Who else will do it for us? What am I, a sheep to lie down and bleat compliance to pronouncements from on high? Big Pharma does NOT have my vote for being caring and trustworthy.

I am one who is super sensitive to all drugs and swore off Rx drugs several decades ago. My doctor suggested LDN for Parkinson symptoms, and after 6 months of arguing I finally gave in since the nutritional approach wasn't working. I take only 1 mg at bedtime and after now only 6 weeks I am seeing a gradual reduction in pain, fatigue, rigidity, tremor, and poor gait. To my surprise I am starting to have days where I actually feel good, rather than just "not ill". I do have "loud" dreams and sleep pattern has been odd. I will stay on 1 mg till Feb and then increase to 1.5.

LDN isn't a one-size-fits-all drug. Everyone is different.

You bet I am going to toy with it, because maybe I will find out something that may help someone else.

Thanks to everyone for all the interesting input.

[Guest guest]

While I mostly agree with you, I also wonder how many people in the past few years have tried LDN at a dose of 4.5 mg and had side effects such as headaches or constipation or lack of sleep so that they weren't able to stay on it until they started to receive some of the benefits. While 4.5 mg may be ideal for the majority of the population, until there are actual trials we don't know for sure. If people can take .5 mg and say they can feel results, who are we to say that it can't be true. LDN isn't like other drugs. Naltrexone is 50 mg or more. Low Dose Naltrexone is less than 5 mg. How much less we really can't say 100% until full trials can be run.

Judy HTo better health through knowledgeStarted taking LDN (Low Dose Naltrexone) on 1/21/2009 for Fibromyalgia, Hypothyroid, PCOS and Restless LegsLDNforFibro/

Posted by: "LarryGC" larrygc@... larrygc12

Mon Jan 18, 2010 3:40 pm (PST)

I don't see this much criticism and ripping apart in any other meds.I've never seen any talk of people on just the MS drugs doing this.... just little squirts of avonex, betaseron, rebif and copaxone, building up each day to the full dose, after a year.I've never seen anyone melt down an aspirin to take more and more with each headacheI'll also bet they START with 5000 MG of Vitamin C when they sneeze, rather han 50 MGNo OTHER med is toyed with like this.And to think it all started out because people wanted to try 3.0 and go up to 4.5 after a while for ONE issue, got 1.5 MG caps made so 3.0 or 4.5 could be utilized, and then it snowballed into never never land.

[Guest guest]

Hi Remote, each time I try to take 1mg every day by the 7th day I start to feel worse, so right now it's 1mg every other day and I'm going to go for 2mg every other day starting in Feb, I think. I take no other meds except Armour thyroid and resist big phama meds with a passion and it took a year before I jumped on this one. Deal with OA and some mild FM. Thanks for your input.

[low dose naltrexone] Re: 10 days on VERY low dose Naltrexone

Larry mentioned "toying" with LDN. I am finding it fascinating to learn how others are improving their results.

I also think that since Big Pharma will likely ignore LDN because there's no $ to be made from it (except possibly to try to suppress it because it works), it really is up to us to do the experiments and report on the results. Who else will do it for us? What am I, a sheep to lie down and bleat compliance to pronouncements from on high? Big Pharma does NOT have my vote for being caring and trustworthy.

I am one who is super sensitive to all drugs and swore off Rx drugs several decades ago. My doctor suggested LDN for Parkinson symptoms, and after 6 months of arguing I finally gave in since the nutritional approach wasn't working. I take only 1 mg at bedtime and after now only 6 weeks I am seeing a gradual reduction in pain, fatigue, rigidity, tremor, and poor gait. To my surprise I am starting to have days where I actually feel good, rather than just "not ill". I do have "loud" dreams and sleep pattern has been odd. I will stay on 1 mg till Feb and then increase to 1.5.

LDN isn't a one-size-fits-all drug. Everyone is different.

You bet I am going to toy with it, because maybe I will find out something that may help someone else.

Thanks to everyone for all the interesting input.

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.149/2631 - Release Date: 01/18/10 08:56:00

[Guest guest]

10 years ago, we had one of the leading edge neuro's complain about the side effects when he put his patients on 4.5mg from the start. We worked out a titration schedule that started at 1.5mg x 30 days, then 3mg for 30 days, then 4.5mg thereafter. Some have said that this was too conservative, others have said that its too aggressive. Can't please everybody eh.

I still stand by this protocol for the majority of MS patients. Now for the others: IBD, FM/CF etc, I recommend going for 4.5 and putting up with the side effects. There are very few people, if willing to deal with s/e for a short period, who will not be able to continue. Like wise you are getting the best for you buck going this way. If you read Dr. 's papers on her use, you will see she went big right away, with some pretty remarkable results.

Dr.Skip

[Guest guest]

Could it also be that the sleep disturbances are worse on the lower dose as I

found. I started at 3mg and am now at 4.5mg and sleep a lot

better on the higher dose.

(with Secondary Progressive MS)

========================================

Message Received: Jan 19 2010, 06:20 PM

From: slenzrph@...

low dose naltrexone

Cc:

Subject: [low dose naltrexone] Re: 10 days on VERY low dose Naltrexone

10 years ago, we had one of the leading edge neuro's complain about the

side effects when he put his patients on 4.5mg from the start. We worked out

a titration schedule that started at 1.5mg x 30 days, then 3mg for 30 days,

then 4.5mg thereafter. Some have said that this was too conservative,

others have said that its too aggressive. Can't please everybody eh.

I still stand by this protocol for the majority of MS patients. Now for

the others: IBD, FM/CF etc, I recommend going for 4.5 and putting up with

the side effects. There are very few people, if willing to deal with s/e

for a short period, who will not be able to continue. Like wise you are

getting the best for you buck going this way. If you read Dr. 's papers

on her use, you will see she went big right away, with some pretty

remarkable results.

Dr.Skip

[Guest guest]



I sleep long and deep on very low dose still at 1mg every other day with some variations. I use low dose Melatonin and Inositol too which I have for over 2 yrs as I developed horrible sleep issues with the FM and advanced OA and aging.

[low dose naltrexone] Re: 10 days on VERY low dose Naltrexone10 years ago, we had one of the leading edge neuro's complain about the side effects when he put his patients on 4.5mg from the start. We worked out a titration schedule that started at 1.5mg x 30 days, then 3mg for 30 days, then 4.5mg thereafter. Some have said that this was too conservative, others have said that its too aggressive. Can't please everybody eh. I still stand by this protocol for the majority of MS patients. Now for the others: IBD, FM/CF etc, I recommend going for 4.5 and putting up with the side effects. There are very few people, if willing to deal with s/e for a short period, who will not be able to continue. Like wise you are getting the best for you buck going this way. If you read Dr. 's papers on her use, you will see she went big right away, with some pretty remarkable results.Dr.Skip

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.150/2632 - Release Date: 01/18/10 23:34:00

[Guest guest]

Does the patients size and age play any part in the dosage? Thanks

[Guest guest]

Dr. Bihari feels all people should be on 4.5mg of LDN except those with MS. No

one with MS should be on less than 4.5mg of LDN unless you experience severe

stiffness for more than 3 months or you weigh less than 105 pounds and 3.0mg

should be used. Dr. Bihari prefers everyone who weighs no less than 105lbs to

use 4.5mg if possible. If not possible with MS then back the dosage down to no

less than 3.0mg. It could take extra stiffness from LDN 6 months to fade. If

after 6 months the extra stiffness caused by 4.5mg LDN does not fade then reduce

your LDN dosage. 500 pounds and over can use 5mg to 6mg LDN.

http://ldn.proboards.com/index.cgi?board=links & action=display & thread=717

Dr. Bihari/how to adjust LDN for a child

http://ldn.proboards.com/index.cgi?board=links & action=display & thread=743

A word of CAUTION to those taking over 4.5mg

http://ldn.proboards.com/index.cgi?board=links & action=display & thread=787

>

> Does the patients size and age play any part in the dosage? Thanks

>

[Guest guest]

What about liver patients? I've been on 3 mg. for 10 months and have hepatitis c - I just went up to 3.5. Dr. Berkson says that his patients start on 3 mg. and "if they can handle it", go on to 4.5. I've had consistent results at 3 mg. As there is some concern with LDN and liver patients, what do you think?

Nola Chris

In a message dated 1/19/2010 12:20:53 P.M. Central Standard Time, slenzrph@... writes:

10 years ago, we had one of the leading edge neuro's complain about the side effects when he put his patients on 4.5mg from the start. We worked out a titration schedule that started at 1.5mg x 30 days, then 3mg for 30 days, then 4.5mg thereafter. Some have said that this was too conservative, others have said that its too aggressive. Can't please everybody eh.

I still stand by this protocol for the majority of MS patients. Now for the others: IBD, FM/CF etc, I recommend going for 4.5 and putting up with the side effects. There are very few people, if willing to deal with s/e for a short period, who will not be able to continue. Like wise you are getting the best for you buck going this way. If you read Dr. 's papers on her use, you will see she went big right away, with some pretty remarkable results.

Dr.Skip

[Guest guest]

Hello,

I have been on LDN since about 2006 to treat MS, of which I have had since 1980. Prior to LDN I was using Prokarin transdermal cream meds.

When I started LDN @ 3.5 mg, my persistent symptoms included terrible depression, double vision (needing prism glasses to see normal), needed a "walker" or scooter for walking and off-balance issues, had to take 3 or 5 naps per day because always felt so tired... those were just the most pesky symptoms.

Although I don't remember exactly when I started "seeing" improvements... since 2008 I have not used my walker or my scooter ... I use a hiking stick for any walking outside my home (sadly, I unfortunately still have a pronounced limp) have been on an antidepressant that finally actually works, have not had to wear my prism glasses to correct my double vision... no more double vision, only take one nap per day, if any, In other words, the 3.5 mg has been a tremendous success for me. Haven't tried to up it yet... not sure about that.

Having MS, is has, for me, always been about "experimenting" with meds and or supplements, because it is so Individually specific for each person that has it. Have never had a Neurologist that would look beyond his text-book teachings, and were always very unhelpful. Luckily, since about 1990 I have been blessed with a family doctor that has an interest in alternative treatments, so he has been easier to discuss experimental new treatments like Prokarin, and considering a prescription to "off label" uses for certain drugs like LDN!

LDN, at 3.5 mg per night, for me personally has been God sent. But I know it will not work the same with every person because every person is different and thus reacts differently to substances in the body.

God bless all of you folks who are in such a health predicament as to look to less known treatments. All I can say is to stay focused on the other side of the river. Taking a big leap may not be in your best interest... unless you are a strong swimmer and don't mind swimming upstream.

Sometimes the best way to get across, is to patiently take those baby steps on the most sturdy stepping stones that will hold you until you can take the next step. Just make sure you keep your option to step back.

God be with you with every step,

STARR

STARR

[Guest guest]

This has also been true for me. I had sleep problems before ldn. I started at 4.5 and did well but with all the discussion of lower doses I experimented and found that my sleep worsened with the lower dosage. So I went back to 4.5 and continue to have good sleep. I do take a sleep med but hope to wean off at some point. Have been on sleep med

for 5 years and ldn about 7 mos.

Could it also be that the sleep disturbances are worse on the lower dose as I found. I started at 3mg and am now at 4.5mg and sleep a lot

better on the higher dose.

(with Secondary Progressive M

[Guest guest]

do not change a winning horse.if you look for more improvement you can try higher and always go back when it becomes worse.