Low dose Naltrexone

[penny]

Does it affect mood? I don't do well with meds that do. I guess since it's sort of like the opposite of an opiate, and those affect mood, I'm wondering if this does as well. Glad you slept a bit more L'engle.

Hi Ocean,
At the right dose I think it can have a beneficial effect on mood (those endorphins again!) though for me it was very mild. The only time I really noticed it (in a positive way) was when I first started taking it and had a bit of sleep disturbance, I remember lying in bed in the middle of the night, awake, again, just feeling happy. Which was really weird, because usually pain+insomnia doesn't = happiness!

But I don't believe it directly acts on any of the main neurotransmitters that traditionally are associated with drugs aimed at effecting mood (i.e. antidepressants). Though I haven't researched this specifically.

And of course with too large of a dose I think it can negatively effect mood. At least that is my personal experience.

Best,
Penny

 

[CBS64]

Low-Dose Naltrexone and Adrenal Function

About a month ago, I started taking .5mg of low-dose naltrexone (LDN), once every 3 days. After several weeks, my adrenals started to feel much weaker and it almost felt like they (and my kidneys) were sore or inflammed. Since I have stage 7 adrenal fatigue, my cortisol and DHEA levels are already extremely low. I can't afford to take anything that makes the adrenals weaker, but I really wanted to give the LDN a try. I noticed that I was sleeping better while on it (sometimes it would interfere with my sleep on the day I took it, but then I would sleep better on subsequent nights). I also seemed to just feel a little better on it -- at least until the adrenals started crashing.

I've been trying to find information about the effects of LDN on the adrenals and whether others with CFS have had this reaction to it. I saw one comment that said LDN causes the body to release cortisol. But there was another comment that said cortisol production may go down because LDN stimulates the body to make endorphins from the same biochemicals that are used to make ACTH, which signals the pituitary to stimulate the adrenals to make cortisol. So I'm confused as to what kind of effect the LDN is having on the adrenals.

Unfortunately, I can't just take some cortisol, Cortef or DHEA to boost my adrenal function since I have a paradoxical reaction to those and they actually suppress my adrenal function. If anyone has any thoughts as to what may be happening here with the adrenals or what I can do or take to alleviate this side effect, I would be very grateful to hear it.

Thank you

 

[L'engle]

About a month ago, I started taking .5mg of low-dose naltrexone (LDN), once every 3 days. After several weeks, my adrenals started to feel much weaker and it almost felt like they (and my kidneys) were sore or inflammed. Since I have stage 7 adrenal fatigue, my cortisol and DHEA levels are already extremely low. I can't afford to take anything that makes the adrenals weaker, but I really wanted to give the LDN a try. I noticed that I was sleeping better while on it (sometimes it would interfere with my sleep on the day I took it, but then I would sleep better on subsequent nights). I also seemed to just feel a little better on it -- at least until the adrenals started crashing.

I've been trying to find information about the effects of LDN on the adrenals and whether others with CFS have had this reaction to it. I saw one comment that said LDN causes the body to release cortisol. But there was another comment that said cortisol production may go down because LDN stimulates the body to make endorphins from the same biochemicals that are used to make ACTH, which signals the pituitary to stimulate the adrenals to make cortisol. So I'm confused as to what kind of effect the LDN is having on the adrenals.

Unfortunately, I can't just take some cortisol, Cortef or DHEA to boost my adrenal function since I have a paradoxical reaction to those and they actually suppress my adrenal function. If anyone has any thoughts as to what may be happening here with the adrenals or what I can do or take to alleviate this side effect, I would be very grateful to hear it.

Thank you

Hi,

Do you get 'rogoff's sign'? This is a n tender or soreness in the mid back area around the adrenals. I slept poorly the other night and had abit of this soreness the next night. LDN seems to be effecting my sleep so far but not in a very predictable way. I take it every few days, but the sleep disturbance is not necessarily on the night after I've taken it, often the second, third or even fourth night.

I've had a bit of benefit from adrenal supplements in the past. They might be worthwhile, if you can take them. I've had adrenals crash for thyroid extract. I'm really hoping LDN doesn't cause a similar problem.

Good luck and I hope it gets better for you!

 

[garcia]

About a month ago, I started taking .5mg of low-dose naltrexone (LDN), once every 3 days. After several weeks, my adrenals started to feel much weaker and it almost felt like they (and my kidneys) were sore or inflammed. Since I have stage 7 adrenal fatigue, my cortisol and DHEA levels are already extremely low. I can't afford to take anything that makes the adrenals weaker, but I really wanted to give the LDN a try. I noticed that I was sleeping better while on it (sometimes it would interfere with my sleep on the day I took it, but then I would sleep better on subsequent nights). I also seemed to just feel a little better on it -- at least until the adrenals started crashing.

I've been trying to find information about the effects of LDN on the adrenals and whether others with CFS have had this reaction to it. I saw one comment that said LDN causes the body to release cortisol. But there was another comment that said cortisol production may go down because LDN stimulates the body to make endorphins from the same biochemicals that are used to make ACTH, which signals the pituitary to stimulate the adrenals to make cortisol. So I'm confused as to what kind of effect the LDN is having on the adrenals.

Hi CBS, I answered on the other thread but will answer here too (so it doesn't get lost).

LDN definitely lowers cortisol, as endorphins have an anti-cortisol effect, and that has been my overwhelming experience. Even to the point that when I would have a cortisol/stress surge (don't get them often) the only thing which helped would be LDN.

This leads me on to jstefl's observations that taking it in the mornings worked better for him. It would be interesting to experiment, but I would caution that for those of us with adrenal insufficiency this may not be such a good idea. In general we want cortisol to be low at night (ours is normally raised), so taking LDN at night is a good idea from that point of view. Generally we want cortisol to be high in the morning (ours is normally lower than it should be), so there is a danger that taking LDN will lower it even further.

 

[CBS64]

L'engle,

I did get the sore feeling in the kidney/adrenal area! I'm glad you mentioned that because I thought it was one of my idiosyncratic reactions to medication. The kidneys/adrenals felt sore and inflammed. I wondered if this symptom was caused during the process of eliminating the drug through the kidneys. Do you have any idea why this happens with LDN?

May I ask what adrenal supplement you took that benefited you?

 

[CBS64]

This leads me on to jstefl's observations that taking it in the mornings worked better for him. It would be interesting to experiment, but I would caution that for those of us with adrenal insufficiency this may not be such a good idea. In general we want cortisol to be low at night (ours is normally raised), so taking LDN at night is a good idea from that point of view. Generally we want cortisol to be high in the morning (ours is normally lower than it should be), so there is a danger that taking LDN will lower it even further.

Garcia, that's an interesting point about whether taking LDN at night would help those of us with high evening cortisol levels. I was taking the LDN in the morning since my doctor told me it can cause insomnia (which I already had!). It still caused some sleep problems, but, like L'engle, it wasn't in a predictable way. After a few weeks of taking it, my sleep overall improved. I wonder if I had started by taking it at night, if it wouldn't have affected the adrenals so much. I haven't taken any LDN for over a week and my adrenal function is still depressed, so it does seem to have a long-term affect that lasts well after it has left the body. I'm hoping that my adrenal function eventually goes back to "normal."

When I emailed my doctor about the symptoms, he said that when you start taking LDN it can be a "little rocky" at the beginning. It sounded like he wanted me to hang in there and keep taking it, but I just couldn't. I am assuming that the anti-cortisol effect doesn't go away the longer you take it.

 

[L'engle]

L'engle,

I did get the sore feeling in the kidney/adrenal area! I'm glad you mentioned that because I thought it was one of my idiosyncratic reactions to medication. The kidneys/adrenals felt sore and inflammed. I wondered if this symptom was caused during the process of eliminating the drug through the kidneys. Do you have any idea why this happens with LDN?

May I ask what adrenal supplement you took that benefited you?

HI

The adrenal support I took was a glandular extract. I took AOR brand but another may be cheaper and just as good. It helped a bit but was not cost effective, and I somehow never got around to trying it again. It could be worthwhile for protecting the adrenals.

I was going to post on here in the next couple of days because I was reading back in the earlier posts on this thread and noticed some people took milk thistle in order to be able to tolerate LDN. Apparently it can cause trouble if it is not clearing from the liver properly, and milk thistle is for liver support.

I've been having insomnia despite taking LDN in the mornings, every 2nd to 4th days, and only taking very tiny amounts. I picked up milk thistle this morning. I had an almost-nap in the afternoon and hope to sleep tonight. I'll let you know in the next couple of days whether it seems helpful. I'll take a break from LDN for a few days anyway, as I have to recover from the missed sleep.

 

[Sushi]

Garcia, that's an interesting point about whether taking LDN at night would help those of us with high evening cortisol levels.... After a few weeks of taking it, my sleep overall improved.

Maybe this is why it improved my sleep so much! I do take it at night and did have insomnia at first but when I reached about 3 mg the insomnia left and sleep began to improve a lot.

Sushi

 

[garcia]

I was taking the LDN in the morning since my doctor told me it can cause insomnia (which I already had!). It still caused some sleep problems, but, like L'engle, it wasn't in a predictable way. After a few weeks of taking it, my sleep overall improved. I wonder if I had started by taking it at night, if it wouldn't have affected the adrenals so much. I haven't taken any LDN for over a week and my adrenal function is still depressed, so it does seem to have a long-term affect that lasts well after it has left the body. I'm hoping that my adrenal function eventually goes back to "normal."

Yeah that explains it! I would imagine it was taking it in the morning which has messed up your adrenals. Give it another couple of weeks and I'm sure they will go back to how they were. But personally I am *very* wary of taking anything that can lower cortisol during the day, simply because like you I can not afford to lose what little cortisol I have.

I am assuming that the anti-cortisol effect doesn't go away the longer you take it.

No sadly not.

 

[L'engle]

HI

The adrenal support I took was a glandular extract. I took AOR brand but another may be cheaper and just as good. It helped a bit but was not cost effective, and I somehow never got around to trying it again. It could be worthwhile for protecting the adrenals.

I was going to post on here in the next couple of days because I was reading back in the earlier posts on this thread and noticed some people took milk thistle in order to be able to tolerate LDN. Apparently it can cause trouble if it is not clearing from the liver properly, and milk thistle is for liver support.

I've been having insomnia despite taking LDN in the mornings, every 2nd to 4th days, and only taking very tiny amounts. I picked up milk thistle this morning. I had an almost-nap in the afternoon and hope to sleep tonight. I'll let you know in the next couple of days whether it seems helpful. I'll take a break from LDN for a few days anyway, as I have to recover from the missed sleep.

Hi folks. I slept well last night after taking the milk thistle. It may be a coincidence but I think it has good potential. So I might recommend to those starting LDN to have milk thistle on hand. I'm going to take a break to recover from the missed sleep, then try the ultra low dose of naltrexone again with milk thistle.

 

[anniekim]

My NK cell number and activity have gone up while I have been on LDN (about 2 years), but I am also taking GcMAF and Nexavir so it is hard to tell what is doing what.

I took the LDN first, though, and it definitely helped with many symptoms. I'd advise starting low. 1.5 mg is the usual starting point but some find they need to start at .5 mg or even lower. You may well get an immune response and/or insomnia at first. The insomnia goes away, though it can recur every time you raise your dose (raising by about .5 mg every couple of weeks, depending on your response, seems to work for many). I didn't get insomnia but rather deeper sleep after I got to about 3.5 mg.

Good luck with it!
Sushi

I've been slowly building up over five months LDn, now am on 0.5mg every other day, still low .

Since titrating up to 0.5mg on Sunday I've been getting tender, sore glands in the neck, nasal congestion and mild sore throat. Would these class as immune response symptoms and if so should they be only temporary and go eventually if I persevere?

I should add I've been getting no increase in insomnia but I'm taking the LDn in the morning so that is probably why.

Many thanks in advance

 

[Sushi]

Since titrating up to 0.5mg on Sunday I've been getting tender, sore glands in the neck, nasal congestion and mild sore throat. Would these class as immune response symptoms and if so should they be only temporary and go eventually if I persevere?

Sounds like it to me. That was also my experience every time I raised the dose--some kind of immune response that I got through in about a week.

Best wishes,
Sushi

 

[L'engle]

I'm mixed about LDN so far. The milk thistle didn't really help with the insomnia. I think I may have to try melatonin or something. I took LDN last 3 mornings ago. Only got 3 hours of sleep on the first night. Second night was better, 7-8 hours, third night, was awake for 4 hours in the middle of the night, totaled maybe 6 hours sleep. I can feel it is helping my exercise intolerance, but the insomnia is very rough so my other symptoms are actually worse. I've always tended to be in pain if I didn't get a full night's sleep so that is tough to take. It's also been worse for my cognitive ability.

So I will have to ramp it down to taking the tiny trace amount of LDN (<.25mg) every week or so.

Next day: I finally slept 10+ hours last night, fourth night after taking LDN. If I can get around the insomnia, I think it will be a useful treatment. Going ot take a break for a while.

 

[anniekim]

Thanks for the replies, much appreciated. Today I've marginal nasal congestion, no sore throat and only slightly tender neck gland on left side, right fine today, so hopefully they just are transient symptoms

Sorry l'engle about the insomnia, very hard...

 

[CBS64]

I stopped taking LDN about 2 1/2 weeks ago because it was depressing my adrenal function (which I posted about earlier). For the last couple of days my immune system feels really bad, like it's really struggling, and I feel pretty awful. I'm wondering if anyone else who has come off of LDN has experienced anything like this.

I would like to take something to support my immune system that is safe for people with an autoimmune condition. I've tried ProBoost in the past, but it seems to tax my adrenals. I may try some grapeseed extract today, but that might not be strong enough. Any other ideas?

Thanks

 

[Charles555nc]

I had to stop LDN for awhile because I developed aggressive Rosacea. Im waiting for it to calm down before going back on LDN. I would suggest taking benedryl with LDN, looking back. And high dose non acidic vitamin c (sodium ascorbate) to detoxify.

 

[L'engle]

I'm mixed about LDN so far. The milk thistle didn't really help with the insomnia. I think I may have to try melatonin or something. I took LDN last 3 mornings ago. Only got 3 hours of sleep on the first night. Second night was better, 7-8 hours, third night, was awake for 4 hours in the middle of the night, totaled maybe 6 hours sleep. I can feel it is helping my exercise intolerance, but the insomnia is very rough so my other symptoms are actually worse. I've always tended to be in pain if I didn't get a full night's sleep so that is tough to take. It's also been worse for my cognitive ability.

So I will have to ramp it down to taking the tiny trace amount of LDN (<.25mg) every week or so.

Next day: I finally slept 10+ hours last night, fourth night after taking LDN. If I can get around the insomnia, I think it will be a useful treatment. Going ot take a break for a while.

It's been a week and half since I took the LDN. My sleep is still compromised, though not to the degree it was in the first week. I'm thinking the way I take it, which is to take a very small dry grain of naltrexone, may be absorbing more than other methods, since I don't swallow it. The naltrexone is within a couple of seconds. This is probably a good way to get a lot out of it, but may have higher absorption. So I'm going to try to take even smaller amounts next time I try it. I want to wait until my sleep returns fully to normal before attempting this.

Nearly two weeks now since I last took LDN and my sleep is still very compromised, about every second night or so. Has anyone else had such profound residual insomnia from it?

 

[L'engle]

It's been a week and half since I took the LDN. My sleep is still compromised, though not to the degree it was in the first week. I'm thinking the way I take it, which is to take a very small dry grain of naltrexone, may be absorbing more than other methods, since I don't swallow it. The naltrexone is within a couple of seconds. This is probably a good way to get a lot out of it, but may have higher absorption. So I'm going to try to take even smaller amounts next time I try it. I want to wait until my sleep returns fully to normal before attempting this.

Nearly two weeks now since I last took LDN and my sleep is still very compromised, about every second night or so. Has anyone else had such profound residual insomnia from it?

OK, so it's taken me a month, but I've figured out that the insomnia I've been experiencing has been due not to LDN but to L-carnitine fumarate. The tricky part is, I've been taking L-carnitine for 3-4 months with no problems, but it has been since taking LDN that L-carnitine now causes me insomnia. Either this is a coincidence, that l-carnitine has build-up cumulatively and has just happened to have this effect at the same time as my LDN trial, or the LDN and L-carnitine are interacting somehow. Either way, it took me weeks to figure out, as I'd assumed anything new while on LDN was the LDN. I waited a whole year of being on the active protocol before starting LDN, to get a good sense of what it did before adding in the next factor. I waited for three or four months taking the L-carnitine so that I had a sense of how it worked, and thought this would be enough. I didn't want to stop the active protocol wholesale in order to start LDN, as the protocol is helpful and I have no guarantees while starting a new treatment.

Honestly, I did not think it would be this tricky. I've been off all supplements for a few days, and the L-carnitine is just now wearing off. I want to be good and sure I'm over any side effects before trying LDN again. Realistically, I need several treatments to work together in order to get any significant health gains, and if I have to stop all the others each time I start a new one, then, well, I don't know what to say. Frustrating I guess would be the word.

 

[penny]

Oh, that's so frustrating! But good I guess that you know what was causing the insomnia. Maybe once you're settled with the LDN (assuming it is manageable and helpful for you), you could add back all the methylation supp's minus the l-carnitine?

Good luck and keep us posted with your progress!

 

[L'engle]

Oh, that's so frustrating! But good I guess that you know what was causing the insomnia. Maybe once you're settled with the LDN (assuming it is manageable and helpful for you), you could add back all the methylation supp's minus the l-carnitine?

Good luck and keep us posted with your progress!

Yes, I think it will be good overall in the long run. I just have to take the L-carnitine more sparingly. As it was, I was thinking LDN might be completely unmanageable, but it seems that it wasn't the true cause of the sleeplessness. I finally got two good long sleeps in a row. No supplements today, back to the methyl b12 soon, and trying the LDN again when I feel like being a 'risk taker'