Re: Mixed up circadian rhythms and LDN dose times

[Guest guest]

So you're here in this group since? August 2003? or August 2008? You've read all the archives? How long have you been on LDN? How many have you actually discussed LDN with, over time?

Dr. Bihari says 9pm-3am (standard time) for EVERYONE

Anyone who takes it outside of that window goes against the Bihari Protocol, period, it's not up for discussion, it's a Fact. The Protocol is 9pm-3am, that's that.

People have tried it outside those hours, and from what we've seen, nobody with MS has done Better outside those hours than within them.

For sleep issues, the closer to, or after, midnight hour, the better.

Good luck to you, good luck to us all. Anyone Asks, they're told 9pm-3am standard time by me. I don't care what others say, http://www.ldninfo.org has the necessary information; anyone deviates from it they do so at their own risk.

[low dose naltrexone] Mixed up circadian rhythms and LDN dose times

As another person who does NOT have MS, I am bored and a tad put off by the strident preaching of those with MS who INSIST that their position is gospel with regards to the time that LDN is to be taken. I perceive that their view is the only, correct one. Such a position is illogical and not very useful.

There are many AI conditions for which LDN has proven efficacious. I discern that a great many members of this on-line group do have MS, but there are many with GI issues and lots of us with Connective Tissue conditions like Fibromyalgia.

I take my LDN in the morning because that’s what my brain needs in order to be able to attain restorative sleep.

[Guest guest]

LDN has nothing to do with CIRCADIAN, or so Dr. Bihari indicated

MY POST WAS MATTER OF FACT, AND NOTHING PERSONAL TO ANYONE IN PARTICULAR, I'll add more to it:

[low dose naltrexone] Mixed up circadian rhythms and LDN dose times

As another person who does NOT have MS, I am bored and a tad put off by the strident preaching of those with MS who INSIST that their position is gospel with regards to the time that LDN is to be taken. I perceive that their view is the only, correct one. Such a position is illogical and not very useful.

There are many AI conditions for which LDN has proven efficacious. I discern that a great many members of this on-line group do have MS, but there are many with GI issues and lots of us with Connective Tissue conditions like Fibromyalgia.

I take my LDN in the morning because that’s what my brain needs in order to be able to attain restorative sleep.

[Guest guest]

Maybe these past mails from Dr Skip will help -

One should understand that the diurnal variations of plasma beta endorphins is bi-modal and does not show sine wave regularity. This is why you take it at bedtime and not during a set period. LDN will askew upwards during the concentration nadir. The concentration nadir does not depend on sun light, it depends on sleep cycle. I have given up on this battle though. Dr. Skip

Actually, before Dr. B got sick we had several discussions about an induction type protocol. The bottom line was always trying to get to 4.5mg. We did a survey of reasons why people failed on LDN and found the number one reason was side-effects. The #1 side effect was sleep disturbances. Our ramp up protocol had only one failure, and that was questionable at best. I know that I am one of those with little patients for experimenting with dosing schedules. The majority of evidence is that taking the drug at bedtime, that is the time you go to bed, and not some artificial time frame is the correct way of taking LDN. That is from our study presented at Vanderbilt last fall. I can't find ANY data that suggests variations in the clock time of day has an impact specifically, rather its biological time that is the important determinant. The other issue is concentrations of endo and enkefs and specifically what is happening several hours after taking LDN. I have not been able to find and compelling data that suggests that during the night there is an increase of these moieties, rather this is the time of the nadir. There are diurnal bi-modal zeniths during the near waking hours and again later in the day. I can't say that I knew Dr. B on more than an intellectual level but at that level I am sure that it would piss him off to know that there are those on this and other boards who claim that we should blindly follow a theory that is over 20 years old now, without further exploration. Just don't buy that. He is a scientist first and foremost. Scientists push the envelope . He pushed the envelope, and thank god for that. Dr. Skip

Celia, Scotland.celia@...www.dawsholm.dandie-dinmont.com

[Guest guest]

It's us boring MS'ers that have taken LDN to the heights it has risen

to. If it wasn't for us boring MS'ers most of you would have ever

found out about LDN, it is us MS'ers that put forth the effort to get

LDN in the media and have been raising money to put forth towards

clinical trials.

, a boring MS'er who has taken LDN to greater heights. What

have you done for LDN?

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

>

>

> Oh, was THIS the attack you were telling me was unnecessary? your

attack on those you feel are preaching and insisting?

>

> Like, people who are trying to help others?

>

> And YOU'RE getting upset with them for doing so?

>

> You get what you pay for here... FREE emails from people spending,

or maybe wasting, their time offering help to others?

>

>

> [low dose naltrexone] Mixed up circadian rhythms and LDN

dose times

>

>

> As another person who does NOT have MS, I am bored and a tad put

off by the strident preaching of those with MS who INSIST that their

position is gospel with regards to the time that LDN is to be taken.

I perceive that their view is the only, correct one. Such a position

is illogical and not very useful.

>

[Guest guest]

What dosage and frequency should my physician prescribe?

The usual adult dosage is 4.5mg taken once daily at night. Because of

the rhythms of the body's production of master hormones, LDN is best

taken between 9pm and 3am. Most patients take it at bedtime.

Notable exceptions:

People who have multiple sclerosis that has led to muscle spasms are

advised to use only 3mg daily and to maintain that dosage.

For intial dosage of LDN in those patients who have Hashimoto's

thyroiditis with hypothyroidism and who are taking thyroid hormone

replacement medication, please read Cautionary Warnings, below.

Rarely, the naltrexone may need to be purchased as a solution — in

distilled water — with 1mg per ml dispensed with a 5ml medicine

dropper. If LDN is used in a liquid form, it is important to keep it

refrigerated.

The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every

night. Dosages below this range are likely to have no effect at all,

and dosages above this range are likely to block endorphins for too

long a period of time and interfere with its effectiveness.

> IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-

release form (see above).

Further Questions and Answers

About LDN

Updated: Sep 7, 2008

LDN Homepage

Please Note:

Fundamental questions and answers concerning LDN can be found on the

LDN Homepage and on other pages of this website focused on specific

diseases such as cancer, HIV/AIDS, and MS.

This page contains other questions frequently asked, along with

corresponding answers.

Q:Can LDN be taken during pregnancy? How about while breast feeding?

A:Dr. Phil Boyle, a specialist in fertility care in Galway, reported

the following in 2008: I am confident that LDN is perfectly safe in

pregnancy and in certain cases will actually reduce the risk of

miscarriage. W. Hilgers, M.D, of the US, who developed the

fertility treatment I provide, has used high dose naltrexone...up to

100mg throughout pregnancy and during breastfeeding safely without

ill effect to mother or baby since 1985. I have been prescribing LDN

regularly during pregnancy [for several years] and the results have

been excellent. Clinical experience has proven to me that it is safe.

Q:Can LDN be taken with other medications such as tranquilizers or

chemotherapy? How about interactions with alcohol or tobacco?

A:LDN can be taken along with any other medication or substance, so

long as it is not narcotic-containing. Naltrexone is a pure opioid

antagonist and it will block the action of narcotics. Some examples

of narcotic-containing drugs are Ultram, morphine, Percocet,

Duragesic patch and any codeine-containing medication.

Q:Can LDN be taken along with any of the standard medications for

multiple sclerosis?

A:It can, and many people with MS do this. However, all of the

standard MS drugs, with the probable exception of Copaxone, are

immunosuppressant and thus tend to oppose the beneficial immune

system upregulation induced by LDN. Therefore, many people with MS

try to wean themselves away from these other medications when they

find that they are doing well on LDN.

Q:What is the best dosage of LDN to begin treatment with?

A:For an adult who is not significantly below the normal weight

range, the optimal dose of LDN is 4.5mg, taken each night at bedtime;

i.e., between 9pm and 3am. One can begin at this dose level. If one

were to develop persistent sleep disturbance (i.e., a sleep

disturbance lasting longer than 10 to 14 days) after starting LDN,

which occurs in less than 2% of users, then the dose may be decreased

to 3mg or 2mg.

People who have multiple sclerosis that has led to muscle spasms are

advised to begin treatment with just 3mg daily and to maintain that

dosage.

Q:If I have to work on a night shift, for example from midnight to

8a.m., at what time should I take my LDN?

A:Continue to take LDN as recommended above; i.e., between 9pm and

3am. This relates to the fact that the endorphins for each day are

always produced in the pre-dawn hours, regardless of the hours when

one is awake or sleeping.

Q:If LDN is so wonderful, why isn't it FDA-approved or reported in

one of the respected medical journals?

A:Although the Food and Drug Administration approved naltrexone at

the 50mg dosage in 1984, " low dose naltrexone " ( LDN ) in the 4.5mg

dosage has not yet been submitted for approval because the

prospective clinical trials that are required for FDA approval need

to be funded at the cost of tens of millions of dollars. In the

absence of such a current scientific clinical trial, medical journals

tend not to be interested in " anecdotal " reports of therapeutic

successes.

Q:Can you supply me with the names of physicians in my town who

prescribe LDN?

A:Sorry, we have no such lists of physicians. But any physician may

ethically and legally prescribe LDN as an off-label prescription. If

you are very interested in starting LDN, and you are absolutely

unable to find any local doctor who will prescribe it for you—even

though you have shown them information from the website and made it

clear to them that LDN is compatible with any other medicine (except

narcotics) and that it has no toxicity and no significant side

effects—then you may want to ask the many members of the LDN-

Group, who are eager to help others. You can easily join the Group

(it's free) on the home page of this website by simply entering your

email address.

Q:Can I have my LDN prescription filled at any pharmacy?

Q:Low dose naltrexone prescriptions are generally filled at a

compounding pharmacy. The druggist uses either generic naltrexone

50mg tablets or bulk naltrexone powder to prepare the LDN capsules.

Because there have been occasional reports from patients of a poor

quality product coming from scattered pharmacies, we feature the

names of several pharmacies on the website that have shown themselves

reliable and experienced in correct LDN preparation. (Please note:

Under no circumstances should you accept a preparation of " long-

acting " or " slow release " naltrexone.)

Q;I have HIV/AIDS complicated by lipodystrophy. What can I expect

from starting low dose naltrexone? Could I actually see a reversal in

my condition? How long would it take?

A:Of those people with HIV/AIDS who already have lipodystrophy, the

majority who begin taking nightly LDN experience a gradual reversal

of the signs of lipodystrophy. Although this may occur swiftly in a

few, in most people it has taken the better part of a year. Very,

very rarely do we hear of a non-responder—so rarely that we have to

doubt the legitimacy of their LDN supply.

[Guest guest]

It's not HOSTILE... hostility and negativity are in the eye of the READER, not the sender

it's EXPLANATORY for new people because the longer termers know what happens when new people come on, see 'daytime is ok' and take it, the have relapse after relapse and blame it on the LDN.

So what you Negativity people are saying is, me, Art, Bren, Crystal, C and others should just STOP BOTHERING TO POST ANYTHING TO ANYONE?

I haven't posted much at all but after seeing what I saw today, coming after Art and Bren had made some comments, I decided to see where all these complaints were coming from... someone in this group less than a month? I didn't care when she was taking it, and I was hoping it was working for her, but I wanted to just state MATTER OF FACTLY, without emotion, without anger, without attack, without hostility, the FACTS of Dr. Bihari's Protocol. THAT'S ALL my post said.

WHOMEVER TOOK IT WRONG, WELL, THEY ARE WRONG.

And if you get any SLANDERING EMAILS FROM someone named Good Guy, he's not a Good Guy to be calling people names.

As for "taking it off list", THANK YOU TO ALL THOSE WHO EMAILED ME OFF LIST in support of ME, ART, BREN, CRYSTAL, GARY C & others (you know who you are).

in closing, IF YOU TAKE IT DURING THE DAY, AND ARE DOING WELL, GREAT, LOVE IT. but if you're not taking it during the prescribed time and YOU ARE NOT DOING WELL, well, then, you know what, Good Luck to you. I don't care. But from time to time I will re-state the FACTS as we understand them -- TAKE IT FOR WHAT YOU PAID - FREE ADVICE, NO CHARGE, and I usually even throw in a HAVE A NICE DAY.

IF YOU CAN'T TELL HUMOR, LIGHTNESS, TONGUE IN CHEEK commentary with NOTHING BUT FACTS, if you POINT A FINGER of 'negativity' or anything else, realize you are only showing the group that YOU need to JUDGE.

Every 'NEGATIVE' response pot/kettle, only adds to a fuel that wasn't yet burning.

That's all I care to say. Every time I bother, I wonder why.

I'll post some good Youtube links that can blow your mind, maybe that'll be better.

http://www.youtube.com/watch?v=8uWTAU8G0Fc & feature=PlayList & p=3E621E8BB1EBB6C6 & index=0 & playnext=1

http://www.youtube.com/watch?v=4wwaYQVjUQ4 & feature=PlayList & p=5B2006AA643AD59A & index=0 & playnext=1

http://www.youtube.com/watch?v=vpwLdgTqlc0

http://www.youtube.com/watch?v=963SmatPfRU & feature=PlayList & p=CB87A25F2B40F29F & index=0 & playnext=1

http://www.youtube.com/watch?v=sCOZY6PUubk & feature=PlayList & p=07DAB37D8E6C2E07 & index=0 & playnext=1 (Part 3 & 4 is about all the drugs people take and are gleefully prescribed)

[low dose naltrexone] Re: Mixed up circadian rhythms and LDN dose times

Why are people so hostile towards those who have had success taking LDN during the day? I just don't get it.Toni------------------------------------

[Guest guest]

I agree Larry totally with what you said. I hope tomorrow on this group will be better a day. I think this discussion went on far too long. At this very moment, I am reading post after post shaking my head. I hope we can drop this and get on with it. I myself I am new to the group. I joined the first of the month and did not expect to see this. We are human, so we are entitled to express opinions.

Take Care Everybody,

a

[low dose naltrexone] Re: Mixed up circadian rhythms and LDN dose times

Why are people so hostile towards those who have had success taking LDN during the day? I just don't get it.Toni------------ --------- --------- ------

[Guest guest]

You and all the oldies do a great job. Have done it for me, and have helped and adviced a LOT of people during the years. We know that MS'ers have to take their LDN at night.

We also know that there are people that can't take it at night because of severe sleep disturbances. They sure have tried for a LONG time to take it by night, but nothing else helped. Then I am sure they have followed your advices / same advices that I always give first. But there is a different:

I have to admit that I tell those that almost gives up on LDN (not to MS'ers) to try daytime dosing for a period to see if it works. Some returns and tells us it helped to change.

Why not do it my way?:

I suggest that we always tell people to take LDN between 09.00 pm and 03.00 am. If they return and tells us that they can't stand the loss of sleep and have got problems due to that, - and NOTHING else (long time trying/melatonin/sleeping pills/homeopath remedy/other things) have helped, THEN they may try day time dosing, instead of quitting the ldn protocol. (But: We can't suggest this to MS'ers)!

So thank you for the good work you oldies are doing here, hope this board always will be the super place to go when we need support and advice!

Keep the good work going! Stay focused on what's important!

Ingrid

[low dose naltrexone] Re: Mixed up circadian rhythms and LDN dose times

Why are people so hostile towards those who have had success taking LDN during the day? I just don't get it.Toni------------------------------------

[Guest guest]

" Stay focused on what's important! "

I think the long time / experienced / successful LDN user's are doing

just that, staying focused on what's important. Some have been

member's here for five or more years and have seen and read all sorts

of health situations and dealt with all sorts of members. Very few

remain active and helpful, rather they are like shooting stars

appearing then disappearing forever. One member used to tout taking

25mgs LDN for MS exacerbations all in a very convincing manner. She

was the only one and now she is gone. Another pops in and says

Vitamin D is dangerous, again in a very convincing manner, he is the

only member to say this. That advice goes against everything I have

ever heard about Vitamin D for MS. The member I spoke of a few posts

ago who claims she took LDN in the morning for MS was banned from

this group for being a liar about Dr. Bihari and a vulgar nuisance to

the members. I could go on and on. Who are we to believe?

The Bihari Protocol of taking LDN 9PM - 3AM is not just for those

afflicted with the cruel disease of multiple sclerosis. The LDN

website is not just for those with MS. The site lists the disease's

LDN is supposed to help. This group is not just for those with MS and

this is not a contest to see who's protocol is better. Anyone here

who decides to give advice MUST be careful and wise and keep in mind

you are dealing with real people with real problems. One wrong move,

one wrong word of advice could mean death to some and because this is

over the internet you would never know, right? It is up to all

members to speak up and not be afraid to hold the feet to the fire of

those you feel are out of line.

Go for it.

Art

--

>

> You and all the oldies do a great job. Have done it for me, and

have helped and adviced a LOT of people during the years. We know

that MS'ers have to take their LDN at night.

> We also know that there are people that can't take it at night

because of severe sleep disturbances. They sure have tried for a LONG

time to take it by night, but nothing else helped. Then I am sure

they have followed your advices / same advices that I always give

first. But there is a different:

> I have to admit that I tell those that almost gives up on LDN (not

to MS'ers) to try daytime dosing for a period to see if it works.

Some returns and tells us it helped to change.

> Why not do it my way?:

> I suggest that we always tell people to take LDN between 09.00 pm

and 03.00 am. If they return and tells us that they can't stand the

loss of sleep and have got problems due to that, -  and NOTHING

else (long time trying/melatonin/sleeping pills/homeopath

remedy/other things) have helped, THEN they may try day time dosing,

instead of quitting the ldn protocol. (But: We can't suggest this to

MS'ers)!

>

> So thank you for the good work you oldies are doing here, hope

this board always will be the super place to go when we need support

and advice!

> Keep the good work going! Stay focused on what's important!

>

>  Ingrid

>

[Guest guest]

Its interesting. The action of LDN generally takes place at the nadir of endorphin concentrations. As the endorphin cycle is diurnal there would be an increase at the second peak. The issue is that this peak will not be equal to the peak created from the night time nadir. So, it is not particularly the dx that is important, rather its the response that is important. You will get a response, its just not as much. I know this is hearsay but it is the science. Heck, there are people who believe that its the position of the stars and moon that affect the time you should take LDN.

Dr. Skip

In a message dated 9/23/2008 3:06:33 P.M. Eastern Daylight Time, gunn.ingrid@... writes:

Now we're talking :-)

Ingrid

[low dose naltrexone] Mixed up circadian rhythms and LDN dose times

As another person who does NOT have MS, I am bored and a tad put off by the strident preaching of those with MS who INSIST that their position is gospel with regards to the time that LDN is to be taken. I perceive that their view is the only, correct one. Such a position is illogical and not very useful.

There are many AI conditions for which LDN has proven efficacious. I discern that a great many members of this on-line group do have MS, but there are many with GI issues and lots of us with Connective Tissue conditions like Fibromyalgia.

I take my LDN in the morning because that’s what my brain needs in order to be able to attain restorative sleep.

I would like to remind everyone that this is NOT a group for MS sufferers who take LDN. It is a group of proactive people who live with a variety of chronic health conditions who have taken control of their lives in an effort to enjoy as full a life as possible.

No one wants the added stress of feeling guilty, doubtful or excluded because they do not have MS and do not need to take LDN at night.

My morning stiffness has virtually disappeared since I have begun the LDN. Instead of needing to take Baclofen or Tylenol several times a day, I can often go days without the need of pain relief. Like Sealady, I am ecstatic to be able to sleep on my sides and stomach again after decades of not being able to do so.

If I took LDN at night, I wouldn’t get any sleep at all. And as we all know, without restorative sleep, the body cannot heal itself.

I would like to suggest that anyone who answers the frequently posed question of when to dose, should start their reply with the words “for those with MS...†I believe that this would help alleviate stress for those seeking LDN information for other conditions.

Judith

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[Guest guest]

When I started LDN I had very mixed up circadian rhythms, and my doc wasn't sure whether I should take it at the normal 9-11:59 PM, or to take it at 4-6 AM which was when my body then perceived bedtime. I went back and forth, unsure what to do, and was leaning to the AM dosing -- thinking my body was more likely to respond then. Then for no real reason I decided on the normal time 9 - 12.

The LDN worked right away; even with a giant escalation of symptoms I could tell it was working. And now, nearly a year later, my circadian rhythms have readjusted. I am and have been on a semi normal rhythm where I fall asleep somewhere around 11 PM - 1 AM. Now, if I could only stay asleep.....

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

judithnewsflash- I am one of the people who say you should take it at night. newsflash. i don't have ms . fibro or anything- i had something i have no idea what it was but it gone now. the reason i say nighttime and deal with the night is there is a theory about ldn and how it works. I am also one of those people that have what someone called upside down circadian rhythms which is a great name for it but again its not true. screwed up rhythms is more likely - and it takes time to get those rhythms back in order.The body is complicated place. ldn is a miracle for most but not the entire answer to how one deals with ones disease be it whatever.no one got what ever disease they had over night and it takes a while after you start ldn - it seems to me that it just gets better and better everyday. my issue with the day time dosing is this. it makes no sense to me. i know that jill smith started dosing in the day only because so many people complained  they couldn't sleep-for no other reason. period end of story. i have it on tape from the second conference.I do not think people give it long enough. the truth with me is ldn or no ldn i would still have sleep issues., i take melatonin and it helps. so i think people just need to be realistic.if you had a sleep issue whether it be falling asleep or staying asleep that may or may not be separate.as a registered nurse I encourage all my patients to develop good sleep habits - it takes a long long time but it does work.so just so you understand  your perception is incorrect.  it is not illogical- but very logical. again - as a health care person and a person who has been video taping you guys for how long -five years? and been involved thru the pharmacy- it is very logical.its also good medicine not to want anyone to be hurt. like i said theres a theory. saying that i understand fibromyalgia very well and i disagree. you need sleep and there are things that you could do to get that sleep  ---there are other things that you could do for your disease state- acupuncture , yoga etc that would help with sleep.every person is different  but there are a lot of conclusions here that become myths and then those myths become truth. and that scares me to death. because maybe something that is true for you is not true with someone else who has fibromyalgia - which is just as much as a garbage can disease and ms.so i would encourage every person to take it at night -do other things to helps your self- diet exercise acupunture chiropritry etc and find your own journey and give it timecyndi CCyndi Lenz RNclenz@...http://www.tdgr2productions.comhttp://www.goldenrescuesouthflorida.com"Is colainn gan cheann duine gan anam cara"The highest calling is to be a soul friend St Brigid On Sep 23, 2008, at 2:31 PM, Judith wrote:As another person who does NOT have MS, I am bored and a tad put off by the strident preaching of those with MS who INSIST that their position is gospel with regards to the time that LDN is to be taken.  I perceive that their view is the only, correct one.  Such a position is illogical and not very useful. There are many AI conditions for which LDN has proven efficacious.  I discern that a great many members of this on-line group do have MS, but there are many with GI issues and lots of us with Connective Tissue conditions like Fibromyalgia. I take my LDN in the morning because that’s what my brain needs in order to be able to attain restorative sleep. I would like to remind everyone that this is NOT a group for MS sufferers who take LDN.  It is a group of proactive people who live with a variety of chronic health conditions who have taken control of their lives in an effort to enjoy as full a life as possible. No one wants the added stress of feeling guilty, doubtful or excluded because they do not have MS and do not need to take LDN at night. My morning stiffness has virtually disappeared since I have begun the LDN.  Instead of needing to take Baclofen or Tylenol several times a day, I can often go days without the need of pain relief.  Like Sealady, I am ecstatic to be able to sleep on my sides and stomach again after decades of not being able to do so.  If I took LDN at night, I wouldn’t get any sleep at all.  And as we all know, without restorative sleep, the body cannot heal itself. I would like to suggest that anyone who answers the frequently posed question of when to dose, should start their reply with the words “for those with MS...”  I believe that this would help alleviate stress for those seeking LDN information for other conditions. Judith