248 replies to this topic

[FunkOdyssey]

Ive just had my total testosterone checked

Its come back high after 1 month on 3-3.5mg LDN

Testosterone 30 nmol/L (range is 9.9-27.8 nmol/L)

not a huge amount over range..however Im not taking anything other than LDN that could make this elevate..this is rather high for a 43 yr old.

On the positive side my Thyroid Antibodies have dropped from
900 to 290...a huge drop..

Also my Liver Function Test 'GGT' dropped from
130 -> 76 ...getting closer to normal.

25 OH D is 100 nmol/L (range 60-110 nmol/L) so pretty OK no need to supp...

so to wrap up LDN appears to be doing good..however some bad as well...previous to this I had mid-range normal levels.

Im still experimenting with dose..and will get it all checked again in month.

Testosterone up, autoimmune antibodies down, liver function up, what exactly are you complaining about again? LDN is treating you right my friend.

[youandme]

Yeah your right It may have sounded negative..but to be honest Im over the moon..almost Lol..just need to maintain the trend ..I am very happy things are going better

The reason why Id worried about Testosterone levels is Doc called me in urgently to ask what was I taking to increase my Testosterone..had a hard job telling her... nothing...she can't believe that LDN could raise testosterone alone.

I posted a question on the LDN yahoo group, one use said it's because Progesterone increases with LDN use and some of that makes Testosterone elevate ...true or false ?!

Testosterone up, autoimmune antibodies down, liver function up, what exactly are you complaining about again? LDN is treating you right my friend.

[edward]

Just wanted to check in on my LDN experience. I stopped it after a few weeks as it really wrecked my sleep, it was ok at first but it got worse, I hung in there but even with lowering the dose I felt extremely sleep deprived, oh well perhaps not for me, my sleep was fragile to begin with, always has been :(

[StrangeAeons]

Just wanted to check in on my LDN experience. I stopped it after a few weeks as it really wrecked my sleep, it was ok at first but it got worse, I hung in there but even with lowering the dose I felt extremely sleep deprived, oh well perhaps not for me, my sleep was fragile to begin with, always has been :(

Edward,
I'm actually considering pushing for LDN from my doc right now, as my OM regimen has been f*ing my mood and energy thus far-- supposedly this is a transient thing. For the record I'm considering LDN due to chronic anhedonia. As I myself have a pretty messed up sleep issues, I was wondering if you could articulate specifically what aspects of sleep the LDN was messing up. Delayed onset? Insomnia? Poor quality? Prolonged sleep inertia? Frequently waking up? Erratic circadian rhythms? Please be as specific as possible, I'm currently weighing my options very heavily.

[edward]

Just wanted to check in on my LDN experience. I stopped it after a few weeks as it really wrecked my sleep, it was ok at first but it got worse, I hung in there but even with lowering the dose I felt extremely sleep deprived, oh well perhaps not for me, my sleep was fragile to begin with, always has been :(

Edward,
I'm actually considering pushing for LDN from my doc right now, as my OM regimen has been f*ing my mood and energy thus far-- supposedly this is a transient thing. For the record I'm considering LDN due to chronic anhedonia. As I myself have a pretty messed up sleep issues, I was wondering if you could articulate specifically what aspects of sleep the LDN was messing up. Delayed onset? Insomnia? Poor quality? Prolonged sleep inertia? Frequently waking up? Erratic circadian rhythms? Please be as specific as possible, I'm currently weighing my options very heavily.

First it was delayed onset, followed by extended periods of vivid dreaming and then followed by early wakening for a total of 5 hours of sleep (I normally get 7-8). I was alright at first as I was energized and in an extra good mood during the day, I assume from the LDN. After awhile this pattern got annoying and I begin to feel sleep deprived during the day and normally when I am sleep deprived (circumstantial) I am able to sleep longer and the deprivation is relieved but with the LDN it was the same deal every night, delayed onset, vivid dreaming all night and only 5ish hours of sleep and never feeling like I actually slept right. Eventually the good feeling from the LDN was overwhelmed by the sleep deprivation.

Now from what I have read from others experiences the sleep issues go away so it may be just me and a minority of others that discontinue due to this.

[FunkOdyssey]

My wife had sleep disturbances for the first couple weeks and then they went away and she sleeps very soundly nowadays. The fact that I added 2g glycine and 500mg tryptophan to her regimen around the same time are confounding factors though. I entertain the possibility that she would still be having sleep disturbances but the amino acids are preventing them.

[youandme]

Edward your sleep experiences mirror mine with LDN..

Its a strange feeling that you only get 5ish hours of sleep yet one has quite a bit energy.

My sleep patterns are not ideal yet...after about 2 months now...still toying with dosage and also trying every other day.

[youandme]

btw did you find you had a dryer mouth in the morning when you woke taking LDN ?

Edited by youandme, 05 March 2009 - 10:28 PM.

[youandme]

Funk hmm Ive have Tryptophan in the cupboard..might give it a short trial see if ti helps.

A longer sleep than 5-6 hours Im sure would help the body along..

My wife had sleep disturbances for the first couple weeks and then they went away and she sleeps very soundly nowadays. The fact that I added 2g glycine and 500mg tryptophan to her regimen around the same time are confounding factors though. I entertain the possibility that she would still be having sleep disturbances but the amino acids are preventing them.

[edward]

Who knows maybe 5 hours was indicative of my body being in better shape over all and I should give it another trial and hang in there despite feelings of not having slept enough. There has been some discussion of higher functioning = less need for sleep, though the discussion and referenced "study" was pretty flawed..... just as an aside, the more I know the less I understand... lol

Btw, no dry mouth. Dry mouth is usually an anticholinergic or adrenergic side effect. Perhaps the energy increasing effects are in part mediated by the adrenergic system somewhere down the line (would make sense with the early wakening as the LDN wears off and the compensatory measures begin to kick in), if so I don't ever have the adrenergic dry mouth thing and I have taken some pretty potent stimulators of that system in the past.

Edited by edward, 05 March 2009 - 10:37 PM.

[youandme]

Edward in my onging endeavours to understand the body works...please can you expand on

"Perhaps the energy increasing effects are in part mediated by the adrenergic system somewhere down the line "

The bit I need your help on is to understand the meaning of "adrenergic system" and its possible relationship with causal of a dryer mouth...TIA

With regards to higher functioning with less sleep...hmm well I have it like this...I seem to function ok in the mornings but much better the later day goes on.

Cheers

Edited by youandme, 06 March 2009 - 02:33 AM.

[StrangeAeons]

this is the second time I should point out the concept of R.E.M. suppression in the depressed; I'm beginning to wonder if these concepts can be extrapolated to the euthymic, or if you guys are all depressed. The possibility of R.E.M. suppression with any neurologically active drug seems a possibility, though I couldn't for the life of me claim that there's an elucidated mechanism to it.
What you're describing, the improvement as the days progresses-- if I recall correctly this is the classic model of diurnal variation in the atypically depressed. Of course, I have my own preoccupations with psychiatry as surely as you might with rheumetology. I think if there were some polysomongraphy studies of patients on LDN that would prove immensely helpful in figuring out what this stuff is doing to people's sleep.

[FunkOdyssey]

Its not that mysterious, its a ton of beta-endorphin released in response to the transient opiate receptor blockade. Its energizing and enhances dopaminergic transmission. You sleep more lightly, with more awakenings, find it difficult to fall back asleep, have more dreams which are unusually vivid (this may represent more REM stage sleep than normal, or it may just enhance recall, I'm not sure).

In most people tolerance builds to the negative effects on sleep quality within a week or two. Some people who cannot tolerate LDN at bedtime take it in the morning. It is not thought to be as effective when taken in the morning (although no studies have compared bedtime vs. morning dosing) but it is better than nothing and the energizing endorphin boost is certainly more welcome during the day.

Edited by FunkOdyssey, 06 March 2009 - 05:28 AM.

[youandme]

Am I getting enough sleep ..is a question I have.

Im sleeping less by approx 2-3 hours variable.


is this a negative or does LDN's actions make up for less sleep especially long term ?

I dont think im in any way depressed currently..I enjoy life so much ! all i dream about is the next day and what great things could happen or what we all here can achieve...when I have been low becuase of Low thyroid hormone nothing can help me..but at the moment despite less sleep hours...( my body though feels like it wants more )!...I feel quite good..always always though could do better...and thats what keeps me driving on.

Edited by youandme, 06 March 2009 - 07:55 AM.

[FunkOdyssey]

You should be getting more sleep than that and your body is sleep deprived but you don't feel it because of the endorphins. Its not unlike stimulant use in that respect. I would try adding 3g glycine, 50mg 5-htp, and optionally a little melatonin and 1-2g taurine at bedtime and see if that allows you to sleep longer. 500mg tryptophan could replace the 5-htp if you tolerate it well -- if it makes you feel like crap then you have the disordered tryptophan metabolism that is common in chronic illness and should stick with 5-htp.

[youandme]

Funk
..yes it makes sense..I will try 'tryp' first as it's on hand...
Will post somewhere in the future how it goes.

Didnt take any LDN last night..and slept a little better..will try 500mg Tryp and LDN tonight..will get other ingredients soon..need to restock up anyway's

Cheers

[imarobot]

Its not that mysterious, its a ton of beta-endorphin released in response to the transient opiate receptor blockade. Its energizing and enhances dopaminergic transmission. You sleep more lightly, with more awakenings, find it difficult to fall back asleep, have more dreams which are unusually vivid (this may represent more REM stage sleep than normal, or it may just enhance recall, I'm not sure).

My wife accidentally woke me during the 1 AM - 2 AM blockade. This has happened many times in the past and I didn't care. Last night I was a little irritated. Who's with me on blaming the LDN rather than me? To be safe, when there's a good chance I'll be awoken, I won't take the LDN.

[FunkOdyssey]

I take elbows to the forehead all the time in the middle of the night. This is going to make me grumpy whether I'm on LDN or not. Olga likes to pretend she's sleeping afterward so I wake up rubbing my forehead and looking around bewildered. She thinks this is hilarious.

[VespeneGas]

I take elbows to the forehead all the time in the middle of the night. This is going to make me grumpy whether I'm on LDN or not. Olga likes to pretend she's sleeping afterward so I wake up rubbing my forehead and looking around bewildered. She thinks this is hilarious.

What a sweetheart! I'm inclined to giggle a bit, myself.

FWIW I was really excited about LDN, but couldn't maintain it due to sleep issues. Keep in mind, I was already struggling with consolidation problems (with which I am still struggling, ashwagandha, melatonin, trazodone, magnesium, taurine and all) so my experience might not be typical, but LDN shattered what sleep I had left. I was dozing for maybe 2 hours a night, and the endorphin rush was the only thing that got me through the day. I tried as low as 1mg nightly and just got the sleep problems with none of the reward.

Someday, I will conquer naltrexone and together we will rule the world

[FunkOdyssey]

For people that, despite experimentation with effective countermeasures, cannot maintain healthy sleeping habits on LDN, it may be advisable to try morning dosing. This may not be quite as effective as bedtime dosing as therapy for some diseases for which LDN is classically used for (MS, crohn's disease), although no formal studies have been conducted to compare them head-to-head. However, if its just being used to enhance quality of life, immunity, etc in otherwise healthy individuals, I think morning dosing of LDN would be better than nothing and would not interfere with sleep.

Debate rages on the Yahoo LDN group between people who have had success with morning dosing and those that adhere strictly to the guidelines of Dr. Brihari (discoverer of LDN) which prescribe bedtime dosing. It does work for a substantial number of people.

Edited by FunkOdyssey, 12 March 2009 - 04:51 PM.

[youandme]

Hmm it's about six weeks on LDN night time dosing..approx 3.5mg liquid.

My previous post was very encouraging...but after 5 weeks feeling much improved..with energy..greater sexual function..and less aches and pains...Ive now appear to have hit a wall.

Last week I started to feel less energy and now yesterday and today...am tired very tired and my body aches real bad...LDN stopped working ?!

Is it that the body readjusts..now LDN wont work ? I really dont know...all I know is that I felt an immediate improvement after commencing LDN which lasted way past any placebo effect (it was also profound) which lasted near 6 weeks.

Even as close as the end of last week I dismantled a garage on my own...I couldnt even walk for 10 minutes before I started LDN..!

But now I ache so bad and am so fatigued..it just does not make sense...Im back in bed just sick.. bugger !

Anyone find the positive effects of LDN decrease or stop over time ?

[azengineer]

Hmm it's about six weeks on LDN night time dosing..approx 3.5mg liquid.


Anyone find the positive effects of LDN decrease or stop over time ?

I have. Although I believe I'm suffering from accumulated sleep deficit. About week five at 4.5 mg I begin to feel more and more run down. I developed a narcoleptic feeling where I could nod off at any time, but never seem to sleep very well. Thinking is more difficult.

I switched to morning dosage which helped a lot. It's been comforting to have my dreams relate in some manner to events of the day instead of just crazy stuff. I don't notice an increase in pain due to opiate blockade during the day. In fact, it seems to help with my neuralgia from the get-go. But my energy has been in the tank. I'm going to skip a day or two and see what happens.

My wife started out taking 4.5 mg for chronic fatigue/fibromyalgia. It helps a lot with the pain, but negatively affects her sleep also. She's commented on the strange dreams. After two weeks she developed horrible flulike symptoms. We let that ride for about a week and then stopped LDN and she recovered. She then titrated upwards to 3 mg per day over a two-week period. Except for the sleep problems, she is thrilled with LDN. She's had diarrhea predominant IBS for many years. On LDN it switches to moderate constipation with gas, which is a a lot better than the diarrhea! She says she feels like her gut is healing up. Her energy may have improved generally, but it's highly variable.

I had my first cold in a couple of years. It was intense but brief. I think I was overdue, and my immune system has been ignoring things it shouldn't have.

We've both noticed that there is a lot more whoopie in the whoopie lately. It doesn't seem to necessarily drive up the frequency or general libido (which would be nice in our mid-50s), but makes the act itself seems more like it was 20 years ago. Very satisfying!

One other thing I've noticed is that my arthritis symptoms have almost disappeared.

It seems to make my muscles feel differently though. During the first week while stretching in my sleep I painfully locked up both of my calves. It felt like I could over contract my muscles. That symptom seems to have diminished.

We both noticed mood enhancement initially which reverted back to normal. Nothing negative as far as mood or attitude goes.

In summary, my anecdotal response...

1. Less pain of all types.

2. Diminished autoimmune symptoms.

3. Enhanced sexual sensitivity and satisfaction.

4. Aggressive cold or flu response.

5. More energy initially, which degrades to poor energy after 5 or 6 weeks. Effect of sleep problems?

6. Crazy dreams which don't seem to relate to the day, or consolidate mental processes as they should. Thinking seems to degrade over time. Much better with morning dosage.

For reference, I'm an athletic 51-year-old male and my 53 year old wife has been dealing with CFIDS/IBS for about six years. I was hoping for improvement with long-term postherpetic neuralgia, more recently developing arthritis and libido for myself. My wife was hoping for improvements with any or all of the symptoms associated with chronic fatigue syndrome. So far, we're very pleased with the experiment. We were expecting sleep issues (and we both have sleep issues anyway), but don't feel like that won't have a work-around.

[imarobot]

I'm almost 2 months into 3.5 mgs a night.

I had sleep problems the first couple days. But I suspect that was anxiety from reading posts about LDN and sleep probems. Sleep is fine now. I've always taken melatonin. Sometimes I'll take 500mg of theanine when my mind is racing, although that's not related to LDN. I've always had (and enjoyed) crazy dreams. As long as I'm not fighting with someone in the dream, even a slightly disturbing dream is a good time. No change with LDN.

The only change I've noticed is that my once severe, seasonal allergies seem to be gone. This is the season I should be sneezing constantly. LDN is worth taking for just that.

If I were smart, I would have had before and after blood-work. But alas, I'm only rich and handsome.

Edited by imarobot, 24 March 2009 - 03:51 PM.

[Gerald W. Gaston]

I'm almost 2 months into 3.5 mgs a night.

imarobot, are you still taking LDN... and at the same dose?

Has anyone else that dropped it in this thread started it back?

[stephen_b]

Has anyone considered that the the opioid receptors might not need daily stimulation? Perhaps other dosing schedules (like every 2 or 3 days) might be enough to normalize their functioning.

[Gerald W. Gaston]

Personally, I have stopped for now... I had a ill thought-out combo of stuff going that, although euphoric, was potentially dangerous. I will likely start back if I get my resting pulse back down into the low 60s again.

[stephen_b]

One aspect of this issue that I'm trying to get my head around is how naltrexone affects those who produce too little opiates versus those who produce too much.

In some models of autism, subpopulations (it is hypothesized) overproduce opiates, which can lead to social isolation (why bother interacting if there is no reward) and sometimes self harm (which releases more opiates). In an animal study, animals given very low dose of opiates had less social interaction. In these animals, it appears that the opiates were fulfilling the need for interaction. On the other hand, animals dosed with naltrexone sought out one another. (Source: interview with Professor Jaak Panksepp.) Dr. Panksepp thought that there also existed a subpopulation of those with autism producing less opiates (or having less sensitivity),

When we final began studying this possibility empirically, it turned out to be a productive idea. It rapidly became clear that when we gave animals very tiny doses of opiates, they were not distressed by social isolation and they became comparatively unsocial (even though could exhibit increases in certain social activities such as rough-and-tumble play). When we gave them opiate antagonists, such as naltrexone, they were more disturbed by social isolation and they became more eager for gentle and friendly social contact. It was not a far step to imagine that these opiate effects on social behavior might reflect something that is happening in childhood disorders such as autism. For quite a while, we struggled with the two logical alternatives--whether such kids might have overactive opioid systems or underactive ones. It is easy to build a compelling logic around either view; but when we focused on the data, it was clear that only the animals given opiates became unsocial and less pain sensitive. Thus, it seemed more compelling to suggest that some kids with autism might also have too much opioid activity in their brain. This was especially attractive since there were experimental drugs, such as naltrexone, that could reduce such brain activities. Still, in the back of my mind, I thought, and still do, that some of the kids, perhaps the insecure/anxious ones, have too little opioid activity.

So, I'm wondering how low dose naltrexone has affected people's sociability. I realize that this is oversimplifying matters, but was wondering if perhaps LDN causes a lessening of social interaction in naturally gregarious people and an increase in those on the other end of the scale.

StephenB

[youandme]

From my own experience...I had an immediate positive effect...social interaction was improved initially...however after the 6 weeks...it had turned into a negative.


I have wondered about dosing...perhaps a dosing even less than everyday..perhaps once or twice weekly.

Experiementation as to what works best for a person is the only way to find out.
Ive heard said that the stimulated endorphins hang around for 70+ hours.

[StrangeAeons]

From what I understand full doses of naltrexone are beneficial in depersonalization disorder, which is definitely a disorder that has the potential for being confounded with autism. Perhaps the upregulation/desensitization of these receptors is is actually deleterious, and the dose should be escalated to maintain a more complete opioid blockade? It would fly in the face of the current theory, but admittedly that theory isn't all that well established. The difficulty here lies in the variety of receptor subtypes; mu opioid receptors seem to mediate hedonic tone and are supposedly immunomodulatory; whereas k opioid receptors seem implicated in some sort of vague, adverse pyschiatric phenomenon. Selective ligands would be nice.

[TheFountain]

One aspect of this issue that I'm trying to get my head around is how naltrexone affects those who produce too little opiates versus those who produce too much.

In some models of autism, subpopulations (it is hypothesized) overproduce opiates, which can lead to social isolation (why bother interacting if there is no reward) and sometimes self harm (which releases more opiates). In an animal study, animals given very low dose of opiates had less social interaction. In these animals, it appears that the opiates were fulfilling the need for interaction. On the other hand, animals dosed with naltrexone sought out one another. (Source: interview with Professor Jaak Panksepp.) Dr. Panksepp thought that there also existed a subpopulation of those with autism producing less opiates (or having less sensitivity),

When we final began studying this possibility empirically, it turned out to be a productive idea. It rapidly became clear that when we gave animals very tiny doses of opiates, they were not distressed by social isolation and they became comparatively unsocial (even though could exhibit increases in certain social activities such as rough-and-tumble play). When we gave them opiate antagonists, such as naltrexone, they were more disturbed by social isolation and they became more eager for gentle and friendly social contact. It was not a far step to imagine that these opiate effects on social behavior might reflect something that is happening in childhood disorders such as autism. For quite a while, we struggled with the two logical alternatives--whether such kids might have overactive opioid systems or underactive ones. It is easy to build a compelling logic around either view; but when we focused on the data, it was clear that only the animals given opiates became unsocial and less pain sensitive. Thus, it seemed more compelling to suggest that some kids with autism might also have too much opioid activity in their brain. This was especially attractive since there were experimental drugs, such as naltrexone, that could reduce such brain activities. Still, in the back of my mind, I thought, and still do, that some of the kids, perhaps the insecure/anxious ones, have too little opioid activity.

So, I'm wondering how low dose naltrexone has affected people's sociability. I realize that this is oversimplifying matters, but was wondering if perhaps LDN causes a lessening of social interaction in naturally gregarious people and an increase in those on the other end of the scale.

StephenB

What does it matter if it affects sociability as long as you get 'that feeling' and are thus fulfilled?