LDN - how's it working for you?

I've been on LDN for...


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I want to aks if anyone else had a worse mood on LDN? I feel like it does supress my mood. Also I got mor headaches from it. My fatigue is lightly better, PEM is still bad as it was before.
I want to stick with it, because my Doctor told me to give it time. Olthough I am struggling with the worsening of my mood. As if this ***illness isn't enough for our depressing ...
Wanted to ask, if it's the LDN/ anyone else has this?
 
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My LDN experience:
Sweet spot for me is 0,06mg-008mg. (Yes, really small dose, i guess you would rather call this really low dose naltrexone, VLDN)
Tried to push it above 0,1mg, but got sick multiple times from that (brain buzzing, nausea, agression/irritability, derealisation, depressed mood).
It definitely helps, but still I am very severe.
It reduces my sensory hypersensitivities, improves my cognition, concentration, and gives me a little bit more strength, and I dont feel like crap overall on it.
When I stopped for a couple days I missed the benefits.
I am grateful for its effect, but its only like 1% improvement.
I am taking it for 2,5 months.
 
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**LOW DOSE NALTREXONE**
Anyone tried higher dosages such as 6-12mg?

I have been taking 4.5mg for 8 months with zero success or impact. Never tried higher dosages tho. Only lower ones
I was having really bad PEM in which my tendons and muscles were more achey and sore thn usual and pain relief was wearing off by 4am. At that time, I was takung 5mg every morning. I asked my doc about increasing ldn. He said to try no more than 7.5 mg/day. I did that for 2 days but it didn't help. What heloed better was taking 2.5 mg in morning and at bedtime.
 

Sherpa

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Is it OK / optimal to take LDN with herbal anti-inflammatories?

I started up LDN as an emergency rescue for flare from Covid vaccine. I also read posts from Dr. Beth O'hare recommending Chinese skullcap and perilla seed extract for mast cell flares. I wonder if it's OK to ombine these for faster / better effect or just go with one intervention at a time?
 
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Chinese skullcap and perilla seed extract for mast cell flares.
I would recommend consulting with a chinese herbalist expert, with regard to taking the chinese herbs on their own. thats not how they are normally taken.

If your wanting to detect benefits from taking some new things, you might not want to take three new things at once.

LDN should not really be an issue interacting with herbs. its sort of doing its own thing, there in the body- temporarily blocking the opioid receptor.

But I am not a doctor.......disclaimer....
 
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Is it OK / optimal to take LDN with herbal anti-inflammatories?

I started up LDN as an emergency rescue for flare from Covid vaccine. I also read posts from Dr. Beth O'hare recommending Chinese skullcap and perilla seed extract for mast cell flares. I wonder if it's OK to ombine these for faster / better effect or just go with one intervention at a time?
I don't see how it could interact w chinese skullcap specifically. Idk about the other herb. But it's pretty simple drug. Not a lot of interactions
 

EddieB

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My LDN experience:
Sweet spot for me is 0,06mg-008mg. (Yes, really small dose, i guess you would rather call this really low dose naltrexone, VLDN)
Tried to push it above 0,1mg, but got sick multiple times from that (brain buzzing, nausea, agression/irritability, derealisation, depressed mood).
It definitely helps, but still I am very severe.
It reduces my sensory hypersensitivities, improves my cognition, concentration, and gives me a little bit more strength, and I dont feel like crap overall on it.
When I stopped for a couple days I missed the benefits.
I am grateful for its effect, but its only like 1% improvement.
I am taking it for 2,5 months.
Can you tell me how you are getting your dose down that low? I am being prescribed .5 mg, was considering dilution/ reduction in water.
 
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Some learnings from Low Dose Nalrexone (LDN)-

Learnings from people who take LDN seem to be start low at 0.5mg and increase by that every two weeks. Some people seem to be sensitive to starting at that low a dose so start at 1mg or use VLDN (very low dose dose naltrexone or ultra low dose naltrexone). Filler is an issue and suspect that is a problem rather than the LDN itself so using sucrose, ginger or rice flour as a filler sublingual, having a pharmacy compound with olive or almond oil seems a good idea too although you wouldn’t think that would work, or compounding capsules or tablets into distilled water fortnightly and leaving the filler to settle or using a coffee filter and taking dose leaving filler separated at the bottom skimming dose from the top.

Compounding at home -
https://altarp.com/how-to-prepare-low-dose-naltrexone-ldn/


If LDN disturbs your sleep, take it in the morning or earlier in the day. It makes no difference when you take it to the rebound effect.

If you feel low or depressed you are probably blocking endorphins for too long so taking too high a dose.

LDN can take some time to work so stick with it “go low and go slow” seems to be the message, and if you have side effects, it is probably working - lower the dose.

If LDN appears to stop working you may be taking too frequently or too much. Drop a day and see what happens. As we all metabolise drugs at different rates it could be you are a slow metaboliser and LDN is not clearing your system very quickly. A day free may get LDN working better.

Sublingual - avoids the digestive tract and doses straight into the blood stream if you are worried about digestive issues. Some people do this with the home made dilution if it is small enough, but you can get the pharmacy version with just naltrexone powder, water and glycerol mostly but always ask what is in what you are receiving from pharmacies as it varies.

4.5mg doesn’t seem to be the optimum dosing target, it really may be very individual and much lower doses work.

Those who are taking LDN to deal with pain seem to do dose higher. The dosing schedule for cancer isn’t above 3mg, and may depend on what disease you have.
http://ldnnow.com/48501/90512.html

When you have been taking LDN long term you could switch around the dosing schedule again and dose alternate days as the rebound effect increases the longer you take LDN, as well as your Immune system will hopefully be in better shape than when you started so you won’t need to take as much or as frequently so play around and find a dosing schedule that suits you. This may be why LDN appears to stop working.

A reminder how LDN works
http://ldnnow.com/48501/90412.html

Handy guides for your Doctors or prescribers
https://ldnresearchtrust.org/2020_LDN_Guides

Surgery - The LDN Trust says stop LDN two days before surgery and resume two days after you have stopped taking opioids.

Side Effects Survey by LDN Trust -

Most sensitive people are those with ME, Fibro, POTS and Mast cell activation.

Most common conditions taking LDN - Fibro and ME.
54% had no side effects

Side effects were associated with the particular formulation of LDN (type of excipients used in capsules, liquid and tablets)

(remember these can be mitigated by changing formula - fillers, and lowering the dose, going low and slow)

Hope this helps.


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EddieB

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It does, thank you!

But my trial didn’t go so well...

I wanted to start out very conservative, as I often have reactions to medications. For the dilution, I had figured it out, in my own round-about way. I opened two .5 mg capsules (1mg LDN) into 10 ml of water. So 1 ml would equal to .1 mg. Just like you said, the fillers sank to the bottom overnight. Kept it in the refrigerator.

For the first dose, I measured off 1/4 ml in a small syringe. Which should equal .025 mg.

I decided to do this in the morning, as some people report insomnia.

The first few hours were fine. But then I began to notice a big stomach acid flare up.
I had heard of a few people having the happen. Some suspected the fillers as the cause, but the dilution appeared to eliminate that issue. Since I already struggle with gastritis, this isn’t something I can afford to play around with.

So that’s where I’ve left off. I find it hard to believe, that tiny amount of LDN could be responsible,
but have no other explanation. I will consider a retry at some point in the future.
 
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Sorry to hear that. What is in your capsules?

Since it is such a small dose you could put the solution under your tongue so you are avoiding the digestive tract and dosing straight into your blood stream?
 
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EddieB

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What is in your capsules?
As in the filler? The pharmacy used a cellulose. But when I made the solution, it all separated to the bottom.
So I didn’t have that to deal with. I then put the solution into a capsule and swallowed that.

put the solution under your tongue so you are avoiding the digestive tract
I was thinking of trying that. But I have heard it may not make a difference, it’s the action of the LDN causing the stomach acid to increase.
 
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As in the filler? The pharmacy used a cellulose. But when I made the solution, it all separated to the bottom.
So I didn’t have that to deal with. I then put the solution into a capsule and swallowed that.


I was thinking of trying that. But I have heard it may not make a difference, it’s the action of the LDN causing the stomach acid to increase.
By what mechanism does LDN increase stomach acid?

Sublingual bypasses the gut, it is straight into the bloodstream. As with LDN Trust‘s research, most issues are eliminated by sorting the filler issues and increasing very slowing. Problems are rarely LDN.
 
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As in the filler? The pharmacy used a cellulose. But when I made the solution, it all separated to the bottom.
So I didn’t have that to deal with. I then put the solution into a capsule and swallowed that.


I was thinking of trying that. But I have heard it may not make a difference, it’s the action of the LDN causing the stomach acid to increase.
Use a 1ml syringe, that way you won’t be risk taking in any cellulose with a capsule. Also less fiddly and more accurate.
 

EddieB

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As with LDN Trust‘s research, most issues are eliminated by sorting the filler issues and increasing very slowing. Problems are rarely LDN.
Agreed, but I have had a couple people tell me that despite bypassing the stomach, they still had acid flare up.
I really have trouble with medications, stomach is very inflamed, any little thing sets it off.


Use a 1ml syringe, that way you won’t be risk taking in any cellulose with a capsule.
I will try, thank you...