Low dose Naltrexone

[leaves]

I take 8000 iu daily. In general 2000 iu vitamin D3 is recommended.

 

[Diva55]

Hmm - all very confusing when you hear about different doses.
I'll stick with 1000iu for the moment and then slowly raise it to see how it goes.

Thanks for all the input.

 

[Diva55]

I've been browsing the LDN Yahoo forums and came across some information which confused me a little. Dr. Zagon is one of the original doctors to bring LDN to the forefront through studies on endorphins (don't quote me on this as my brain is mush!)

This first part was enquiring about twice a day 4.5mg dosing which someone on the board is doing.

But interesting that a recommendation is that doses could be taken evey 2-3 or even 4-5 days and LDN still works.

Dear Jayne

1.LDN is an immunosuppressant - not an immunostimulant (as thought - wrongly - by many).

2.We recommended a dosage of 3 - 10 mg/day based on pharmacokinetics. 9 mg/day - getting to the edge but should be okay - this person may not be optimizing her dosage however.

Remember - you only want the LDN working for 4-6 hr/day - the higher the dosage the longer it hangs around and the shorter the time for your endorphins to work.

3.Stress has nothing to do with LDN.

4.I am seeing some people who become tolerant to LDN and need to take it once every 2 and some every 3 days. I can tell you that LDN can work even as long as once every 4 or 5 days.
Dr. Zagon

This is the somewhat confusing part as I think we all believed LDN to be an immune MODULATOR:

Further to my earlier email from Dr Zagon, I questioned LDN being an immuno suppressant - please see his response below and articles attached.

Jayne Crocker

Dear Jayne:
We have a paper in press - Immunobiology - that B lymphocytes are
suppressed in cell proliferation by the OGF-OGFr axis - this is how LDN does its job.

When the paper comes out I will send it to you. We have another paper submitted showing that T lymphocytes are also suppressed in cell proliferation by OGF. Our studies under in vivo conditions are underway and stand in agreement with our other results.

I have spent considerable time in these studies reviewing much of the flawed investigations from past researchers giving the false impression that LDN is an immunostimulant. There are papers suggesting otherwise we have nailed it down to the molecular level. Knockdown OGFr and OGF does not work!!!

Now, use your head - would you want more immune response if you have MS or arthritis or lupus. No. This would make autoimmune diseases worse. If I did not do so earlier, I will attach 2 papers on MS.
Dr. Zagon

This is the summary from Jayne Crocker who appears to be very experienced in LDN:

I think the statement Low Dose Naltrexone boosts the endorphins to modulate/regulate system still stands.

The effects of LDN is to produce OGF which is the immune suppressor and quickly undoes any immune stimulation from the 4-6 hours of natlrexone blockade acting as an immune system stressor. The effect of suppressing the immune system is to return it to zero and ready for the next event and eliminate chronic sickness and immune activation it is my understanding this is called homeostasis.

So the difference between LDN and the CRAB drugs is that LDN stimulates the system that maintains homeostasis and removes chronic sickness, and CRAB drugs knock out some part of the immune function without regards to the overall system.

Jayne Crocker

 

[*GG*]

Hi ggingues

My only experience with LDN and my gut was it caused a lot of problems - awful stomach pains initially on 1.5mg and loss of appetite. So it shows with your gut improvement that we are all different. I take Probiotics & Prebiotics (Inulin).

If I find I can't get LDN prescribed I will go with making my own from 50mg tabs.

Yes, we are all different. Hope something helps you soon. I was a mess when I first started LDN. I was having severe pain and it did seem to bother my stomach, so I took it with food in the mornings, since my sleep was also very disturbed. I probably should have started at a lower dose than 1.5mgs, but I do not think that I had heard about lower doses back then, although I would forget/skip doses if I could not sleep well!

 

[garcia]

Now, use your head - would you want more immune response if you have MS or arthritis or lupus. No. This would make autoimmune diseases worse. If I did not do so earlier, I will attach 2 papers on MS.
Dr. Zagon

I agree with Zagon that LDN certainly has some immunosuppressive qualities, which is why e.g. gut problems can proliferate when on it (as they do for me), but personally I'd still prefer to call it a modulator.

Also the purely autoimmune model of MS/arthritis/lupus is a bit dated. These are all almost certainly infection-mediated diseases (my arthritis was triggered by an infection). So you neither want to increase or decrease the immune system, but rather have a healthy response.

 

[Diva55]

It does make more sense to me for LDN to be called an immune modulator - I always have trouble following anything too scientific!

However it seems that if your system is being modulated it will kick up some nasties especially for all us senstive ones, hence the side effects we mainly seem to have experienced even on tiny doses.

Yes a healthy immune system up and fighting would be the goal!

I really must start back on it soon.

 

[dsdmom]

Recently I restarted LDN, again at .1mg, butt his time in a compounded cream. The first night I did fine and no problem the day after. The second night I had slight sleep difficulty then a headache the next morning. Third night, same thing - sleep issues, then headache. Fourth night (last night) - worst sleep problems yet - but no headache this morning. Just curious for those of you who have had sleep issues - how many nights did it last? It's been 3 for me and I am hoping for a good night of sleep soon. And I'd like to up the dose since my headaches seem ok.

 

[Sushi]

Recently I restarted LDN, again at .1mg, butt his time in a compounded cream. The first night I did fine and no problem the day after. The second night I had slight sleep difficulty then a headache the next morning. Third night, same thing - sleep issues, then headache. Fourth night (last night) - worst sleep problems yet - but no headache this morning. Just curious for those of you who have had sleep issues - how many nights did it last? It's been 3 for me and I am hoping for a good night of sleep soon. And I'd like to up the dose since my headaches seem ok.

Hi dsdmom,

So glad you got the cream! Yes, I had sleep problems--quite bad when I started. This lasted about 5 -7 days and then was OK. Each time I upped the dose, I got sleep problems again, but progressively, they lasted fewer days and were less of a problem. So, for my last couple of dose raises before hitting 4.5 mg, I had no sleep problems and now, in fact, sleep better than before LDN.

Keep us posted. Really hope this is going to work for you.

Sushi

 

[dsdmom]

I am in need of advice or encouragement or something.
I upped my dose to .2mg. So far no headaches (or no bad ones) and the past 2 nights I have slept ok. But yesterday (after my first night at .2mg) my depression reared it's head - lots of crying over everything and anything. Today I am still down. And I have really not been feeling well physically. I thought it was all due to nystatin but I've stopped that and am now thinking nystatin may have only been part of it. I hve been feeling like everything hurts more and my throat hurts and glands swollen and autonomic symptoms worse. Just an overall worsening of symptoms. Is this normal?

Have others felt all their symptoms worsen on ldn? Does it last long? Do I have to just deal with it? I just want to curl up and cry and make it all go away.
Anybody else get depression on this stuff?

 

[Frank]

dsdmom try the treatments seperate and go very slow with the LDN. I had my symptons worsen at 0.25mg. My next step is to try 0.1mg for months in a row (how low can you go )

 

[dsdmom]

Hi Frank,
Thanks for responding. I guess I am just frustrated. I mean, this is pathetic. I get that I'm sensitive, but LDN is ALREADY called low-dose! Because it is...so it's beyond pathetic that I am having a hard time at .2mg. I can get by, I just am not happy about it. It does make me wonder though if at a SUPER low dose it works differently than at a low dose. And maybe we'd be better off at 1.5mg - 2mg? Have you ever tried a higher dose? I know Diva talked about trying it too...

 

[Lynn]

I am in need of advice or encouragement or something.
I upped my dose to .2mg. So far no headaches (or no bad ones) and the past 2 nights I have slept ok. But yesterday (after my first night at .2mg) my depression reared it's head - lots of crying over everything and anything. Today I am still down. And I have really not been feeling well physically. I thought it was all due to nystatin but I've stopped that and am now thinking nystatin may have only been part of it. I hve been feeling like everything hurts more and my throat hurts and glands swollen and autonomic symptoms worse. Just an overall worsening of symptoms. Is this normal?

Have others felt all their symptoms worsen on ldn? Does it last long? Do I have to just deal with it? I just want to curl up and cry and make it all go away.
Anybody else get depression on this stuff?

Hi Dsdmom,

I did not do well on LDN. I tried various low doses over a nine month period. I tried taking it every day and I tried skipping up to a week between doses. My body never adjusted to it and I had the same experiences that you are having. I even tried a gluten free diet but it didn't help. In general, I do not have extreme sensitivity to drugs. The depression and teariness was the worst part of my LDN experience. I am usually very upbeat even through the worst crashes of CFS/ME.

I have been off LDN for three weeks now and my functioning has not returned back to my pre-LDN state. I have no energy and more body aches than I have had in years. The depression does seem to be lifting although I am still a bit teary.

My opinion is that for some of us LDN helps the immune system fight the bugs that are in our bodies. I think it is probably this battle that makes me feel terrible, but with no research behind it and no evidence that it will work in CFS, I finally decided to stop the madness after nine months .

My experience doesn't mean that it won't work for you. I hope it does. It's just important to know that it can be very difficult.

Lynn

I

 

[helsbells]

This may only be an interrim effect but I too have been experimenting with this over about 9 months too. I finally think I have got to the point when I feel slightly better when taking than not. I chop up a 3mg compounded tab into 6 ie 0.5 mgs over 6 nights - then been having a couple of nigths off and starting again. Last night i skipped and actually gelt worse today so will take 0.5mg again tonight. It isn't anything earth shattering yet just pleased im tolerating. I do think you have to be careful i thik i am coming to the conclusion someone else on this thread did that it is actually immuno-suppresant not a modulater because some issues actually seem to get worse but as I have severe MCS, allergies I am hoping it is helpful for that, it also might mean when you stop you may have stirred up stuff like candida etc which may not have been such a big issue before, it is deffinately difficult and to anyone struggling on a really dose yes i do think it effects you. My libido has increased from these tiny amounts which i think is supposed to be a side affect at much higher doses and this did make me terribly depressed at first too.

 

[Sushi]

I upped my dose to .2mg. So far no headaches (or no bad ones) and the past 2 nights I have slept ok. But yesterday (after my first night at .2mg) my depression reared it's head - lots of crying over everything and anything. Today I am still down. And I have really not been feeling well physically. I thought it was all due to nystatin but I've stopped that and am now thinking nystatin may have only been part of it. I hve been feeling like everything hurts more and my throat hurts and glands swollen and autonomic symptoms worse. Just an overall worsening of symptoms. Is this normal?

Have others felt all their symptoms worsen on ldn? Does it last long? Do I have to just deal with it? I just want to curl up and cry and make it all go away.
Anybody else get depression on this stuff?

Sorry you are having such a hard time with LDN. I believe you are using the cream. Do you know how long it takes to be absorbed and become bio-active? I'm asking because if you are awake during the hours (6 or so) where your opiate receptors are blocked, some people do feel down and depressed. This is, I believe, the main reason to take it at night and thus sleep through this. But the cream may take longer to become active?

As far as feeling worse in general and symptoms increasing, this did happen to me when I upped my dose each time. Each "bout" lasted about a week or however long it took for the immune system to deal with whatever it was battling.

So yes, it wasn't fun, but now I am stable at 4.5 and very glad I went through it. That said, some do find that they can't tolerate it. I hope you won't turn out to be one of this group.

I wish you the best,
Sushi

 

[Diva55]

I was thinking of going to a much higher dose after tolerating 1.5mg.

However I've had some periods of incredibly bad FM pain with scary chest pains. When I've had these episodes I've stopped LDN. It's difficult to know if these are just bad FM flares or if they are related to LDN stirring up the pains. I've read that LDN can stir up pains but it's almost impossible to ride on through these pains so I've chickened out of trying the much higher dose.

I've been reading the Yahoo LDN boards and found that some only take very small doses on alternative days or even only once a week and do well on that. It seems that some are super sensitive (don't we know it!) but do well on the very small dosing schedule.

With this in mind my latest experiment has been taking 0.5mg on alternative days. I found that the nights I take LDN I fall asleep quickly and sleep solidly which is great but the day after my pains are really bad. Then my off-LDN days I don't sleep well but the pains are manageable and I even had the energy to do some chores.

It's so frustrating getting the dosing schedule right. I do feel there are benefits for me with LDN but it's getting the balance right. Does it all even out in the end and you get all benefits or is it a day on, day off benefits??

I am having a hard time at .2mg. I can get by, I just am not happy about it. It does make me wonder though if at a SUPER low dose it works differently than at a low dose. And maybe we'd be better off at 1.5mg - 2mg? Have you ever tried a higher dose? I know Diva talked about trying it too...

 

[dsdmom]

Do you know how long it takes to be absorbed and become bio-active? I'm asking because if you are awake during the hours (6 or so) where your opiate receptors are blocked, some people do feel down and depressed. This is, I believe, the main reason to take it at night and thus sleep through this. But the cream may take longer to become active?

As far as feeling worse in general and symptoms increasing, this did happen to me when I upped my dose each time. Each "bout" lasted about a week or however long it took for the immune system to deal with whatever it was battling.

I have no idea how long it takes to absorb - I got it from Skips and they told me to still take it at night, but I suppose that's a good question to ask them. When you had a worsening of symptoms, which were the ones that got worse?

I was thinking of going to a much higher dose after tolerating 1.5mg.

However I've had some periods of incredibly bad FM pain with scary chest pains. When I've had these episodes I've stopped LDN. It's difficult to know if these are just bad FM flares or if they are related to LDN stirring up the pains. I've read that LDN can stir up pains but it's almost impossible to ride on through these pains so I've chickened out of trying the much higher dose.

I've been reading the Yahoo LDN boards and found that some only take very small doses on alternative days or even only once a week and do well on that. It seems that some are super sensitive (don't we know it!) but do well on the very small dosing schedule.

With this in mind my latest experiment has been taking 0.5mg on alternative days. I found that the nights I take LDN I fall asleep quickly and sleep solidly which is great but the day after my pains are really bad. Then my off-LDN days I don't sleep well but the pains are manageable and I even had the energy to do some chores.

It's so frustrating getting the dosing schedule right. I do feel there are benefits for me with LDN but it's getting the balance right. Does it all even out in the end and you get all benefits or is it a day on, day off benefits??

Hi Diva - so far, I can't say I am finding any benefits. And I think I worry about taking it every other day or a super low dose - I mean, how do we know if that will actually do anything? Dr. Klimas wanted to restest my nk cells, etc after I've been on it for about 4-6 months, but when I told her I was on a super low dose she didn't seem to think testing was absolutely necessary.

I do think you have to be careful i thik i am coming to the conclusion someone else on this thread did that it is actually immuno-suppresant not a modulater because some issues actually seem to get worse but as I have severe MCS, allergies I am hoping it is helpful for that, it also might mean when you stop you may have stirred up stuff like candida etc which may not have been such a big issue before, it is deffinately difficult and to anyone struggling on a really dose yes i do think it effects you. My libido has increased from these tiny amounts which i think is supposed to be a side affect at much higher doses and this did make me terribly depressed at first too.

My depression is better, thankfully. I am curious though why I keep reading that ldn can stir up candida issues. 1)Why? 2) How do we know this?
re: immuno-modulator vs immuno-supressant. Where is the info abotu ti being an immuno-suppressant coming from? I ask because I read about this before as well but never saw any evidence for that.

 

[alice1]

i worked up to 4mg after several months.i was having some trouble with the sleeping again(at 4mg) and then on top of that i got a job with a 2 hour time difference.
that was when everything turned to poo.
because the not enough sleep was a huge concern especially when i work i decided to switch it and take it in the morning which i'd done before and hadn't had a problem mind you it was at a much lesser dose.this time i started to feel really good in the day but my dreams were so wild and vivid that i woke up the last 2 days feeling like i hadn't slept at all.today i have brain fog that i haven't experienced in ages and finally took a couple of tranq to sleep during the day which i did.
i put in a call to dr klimas but she couldn't be found.i'm going to start again tonight at 1mg and see what happens.as you have all said here it's so difficult when you don't know what's causing what.the temps and humidity here have been terrible and the air so thick and dirty that should probably be thrown into the mix as well.
i'll let you know if lowering and switching back to nights is helpful at all.i have to go back and work on this project this weekend and am not too happy at the thought of feeling like this.
i'm also so surprised that i'm having these types of dreams while taking it in the day..wtf? yes we are all different and all sensitive.i thought i was doing well but even the smallest change seems to totally topple the apple cart.
i hope you all find a dose that works or at least doesn't cause more symptoms.my advice is that when you do stay at that dose,it may be your dose and good enough.
best
alberta

 

[alice1]

last night i took a .5 dose and had dreams again but not as disturbing and i did sleep.
i'm feeling better and hoping this continues.i'll stay as .5 for awhile and up it once i finish this job.when i get to 1 or 2 mg i may just stay there for a quite some time as that could be the right dose for me.
good luck everyone.
a

 

[dsdmom]

Alice,
Did you try imunovir through klimas as well?
Also - when I first started ldn at .1mg I took it for a few days and then stopped - the dreams lasted a few days beyond when I had stopped.

I have to say that I don't like this stuff. I am doing my best to hang on - see my doc on Friday and will discuss. But I just feel sick and everything hurts. It started at .1mg and is definitely worse at .2mg. I wish I could know for sure if that means it is stirring things up in my immune system but I don't want to feel like this for months on end as others have.

 

[alice1]

i can't blame you for wanting to stop when you feel worse on it.i think you should go back to .1 and stay there for awhile and of course see what the doc says.
i was on immunovir for months with the ldn and then started to feel that it was amplifying that as well so i went down to 2 a day.i was at the 3daily for a week then 6 daily for a week.now i've stop it completely.for me the ldn is the drug even with its problems.i also have folicular lymphoma and some of my small nodes have gotten smaller and thats a huge deal.i've read too many testimonials as far as the lymphoma so i will endure it but as i said i'm keeping at a low dose until the job is over and will very slowly up it.if i feel 1,2 or 3 is the right place that's where i'll stay.how long were you on the .1? klimas has said to me in the past that she has patients that have stayed at 1 and that seemed to be enough for them.i know a man who is on 4. 5 and it took him awhile but he's 6'4' and weighs 240 so body weight may certainly be an issue..
there are several studies going on in europe for this strange drug but they are seeing improvements with many disorders.