Low-dose naltrexone (LDN) - how's it working for you?

[Forummember9922]

Im about to give ldn a try and had a thought RE ldn and Agmatine, which ive been experimenting with

Just curious if Agmatine could help people with tolerance issues to LDN. Agmatine has been shown to reduce tolerance to a number of things bit also it has opioid interaction - and not sure if this would be positive, negative, or synergistic with ldn

Any thoughts @datadragon if you have time? 😬🐉

Also maybe Agmatine has similar actions as LDN mainly works by increasing endorphans:

“Agmatine reduced blood sugar levels in rats by increasing β-endorphin production by the adrenal glands. β-endorphins cause the uptake of glucose from the blood into skeletal muscle tissue [40, 12, 28]. Clinical trials will be required to repeat these results in humans.”

 

[2Cor.12:19]

My rheumatologist suggested I increase my dose from 3.5 to 4.5......I've been at the 3.5 dose since I first trialed it, and for a bout...eight years (?)

Hi @Rufous McKinney. Did you ever increase to 4.5 and did it help? Do you take it once a day?

I was on 1 mg for years and increased to 2 mg about 6 months ago, which helped a lot. But then my rheumatologist recently suggested maybe upping it. I have a new 90 day supply of 2 mg and don't want to spend more right now. I'm thinking of cutting a cap in half and taking a whole and half making it 3 mg. I'm leery of just doubling the dose to 4 mg. LDN helps a LOT with pain, POTS and mood.

 

[Judee]

I'm leery of just doubling the dose to 4 mg. LDN helps a LOT with pain

I would say to trust your own ME/CFS intuition and not the doctor who probably doesn't have ME/CFS.

 

[2Cor.12:19]

I would say to trust your own ME/CFS intuition and not the doctor who probably doesn't have ME/CFS.

Thanks @Judee - My doc is really good and leaves the dosing up to me. I just got to thinking after her suggestion that maybe a little higher dose would help more. I’ve been on LDN FOR 7 years and initially worked my way up to 4 but backed down to 1 and was on that dose for years . But I’ve had lots of medication changes since then and am wondering if 3 mg might do better. Hmmm.

 

[mrmichaelfreedmen]

LDN caused extreme tiredness. Horrible stuff, overall it made me worse. That was with 1.5mg per day, higher doses made effects worse.

Strangely though, it seemed to help the first couple of days, went downhill after that.

 

[Jessrose21]

I tried LDN for 2 1/2 weeks at 0.5 mgs. It made me a lot worse: heart pain, headaches, migraines, worse stamina and less strength. It also made my IBS worse and didn't touch my pain or my tachycardia. It's taking me months to get back to my old baseline, which sucked to begin with, and I'm not there yet. It's been a nightmare and wish I'd never heard of the stuff. I'm housebound and mostly bedbound and my QOL has decreased b/c of LDN. I used to be able to paint every night sitting in bed for 20-30 mins without breaking into a over-exertion sweat, and now I can only do a few nights in a row for 15-20 mins without sweating. (It's like a feverish, fluey sweat, not a normal exertion.) It's devastating to lose that creative time and stamina. I can't imagine what would have happened on a higher dose.

 

[Rufous McKinney]

Hi @Rufous McKinney. Did you ever increase to 4.5 and did it help? Do you take it once a day?

no, I just stick with the 3.5 mgs...I started with, and I take it before bed.

I just ran out for almost a month and many symptoms returned, I"d forgotten or enjoyed having them largely gone.

- angiodema/ swelling ups which are likely Mast Cell or Allergic or Immune. (mouth tongue)
- sore throat/ way way less- inflammatory?
- some muscle pains I think may be fibromyalgia related, are far less bad
- the blood blisters on my salivary glands are subsiding

 

[Rufous McKinney]

It's devastating to lose that creative time and stamina. I can't imagine what would have happened on a higher dose.

I"m so sorry that happened.

I believe you, yet I find this hard to believe. That such a tiny tiny amount would do all those negative things.

We are such mixed bags of sensitivities. Like just touching some Xmas gifts, that alone made me ill.

The kids given scratch and sniff books. Please, could we STOP doing that?

BTW: what was the filler? I heard calcium is sometimes used and that can cause us problems.

 

[Jessrose21]

I"m so sorry that happened.

I believe you, yet I find this hard to believe. That such a tiny tiny amount would do all those negative things.

We are such mixed bags of sensitivities. Like just touching some Xmas gifts, that alone made me ill.

The kids given scratch and sniff books. Please, could we STOP doing that?

BTW: what was the filler? I heard calcium is sometimes used and that can cause us problems.

I don't know the filler. My compound pharmacist made it. I take calcium supplements every day so I'm not sure that would affect me. Who would think such a low dose would affect me so badly but I've been sick for 30 years and am incredibly sensitive to so many things. I also had withdrawal symptoms of itchy legs and feet and tingling down the backs of my legs for several weeks. Now I have neuropathy in my feet and can't stand to have blankets on them. It was just a very bad drug for my body.

 

[SpinachHands]

My partner has been going up from 0.1mg to 0.5mg LDN over the past month but we have had to stop today. Their side effects have only gotten worse- headaches, brain fog, sinus issues (stuffed up nose and some wheezy breathing), plus massive emotional changes like anger and crying that's very out of character. We've agreed that we increased too fast and too soon, so once they're off and stabilised will start again from 0.1 and stay on that for as long as needed. We thought the "sweet spot" would be at least 0.5mg and above, but has anyone seen improvement from below that? I have even been looking into ultra low dose naltrexone, but the only research is for those coming off opiates. Is it true that 0.1mg and below will increase endorphins without blocking them?

 

[Blazer95]

I have gotten worse on LDN and i had to stop completely.

- I got really pale
- I couldnt feel my heart beating anymore, it was beating very weak
- I developed orthostatic intolerance ( i have very mild OI that i usually dont notice)
- I felt it numbed every singnaling in my body (including pain though..)

Couldnt bare it and had to stop taking it.

I took 0.5mg

I have the Version of ME/CFS where you cant get a regular cold / normal sick at all anymore. Maybe that has to do with something since there are these 2 major groups: 1. getting sick all the time 2. not being able to catch a normal cold anymore

 

[Heart Face]

My partner has been going up from 0.1mg to 0.5mg LDN over the past month but we have had to stop today. Their side effects have only gotten worse- headaches, brain fog, sinus issues (stuffed up nose and some wheezy breathing), plus massive emotional changes like anger and crying that's very out of character. We've agreed that we increased too fast and too soon, so once they're off and stabilised will start again from 0.1 and stay on that for as long as needed. We thought the "sweet spot" would be at least 0.5mg and above, but has anyone seen improvement from below that? I have even been looking into ultra low dose naltrexone, but the only research is for those coming off opiates. Is it true that 0.1mg and below will increase endorphins without blocking them?

There are lots of people who improve at 0.1mg and below, and once they and see improvements can then increase to 0.5mg and beyond.

No it is not true that below 0.1mg doesn’t blocks endorphins where did that information come from?

No one can know what their sweet spot is until you start very low (IMHO) and titrate very slowly. That is how you find your individual optimal dose. This advice is often ignored and so people increase too quickly and end up with side effects. Personally I think starting very low and staying low until you have no side effects works best. Andy kind of side effect don’t increase and making LDN with tablets and distilled water is best.


You can use ULDN, no reason why you wouldn‘t It isn‘t just for stopping opiates. Dr John Kim uses it for all sorts of disease.

 

[Heart Face]

I tried LDN for 2 1/2 weeks at 0.5 mgs. It made me a lot worse: heart pain, headaches, migraines, worse stamina and less strength. It also made my IBS worse and didn't touch my pain or my tachycardia. It's taking me months to get back to my old baseline, which sucked to begin with, and I'm not there yet. It's been a nightmare and wish I'd never heard of the stuff. I'm housebound and mostly bedbound and my QOL has decreased b/c of LDN. I used to be able to paint every night sitting in bed for 20-30 mins without breaking into a over-exertion sweat, and now I can only do a few nights in a row for 15-20 mins without sweating. (It's like a feverish, fluey sweat, not a normal exertion.) It's devastating to lose that creative time and stamina. I can't imagine what would have happened on a higher dose.

Sorry to hear this. I really hope you are back to your normal baseline. It’s likely you started at too higher dose. Do you have PoTS and MCAS? We often have to start lower at 0.1mg. I always think that’s better just in case.

 

[Sequestered Hog]

I am on day three of LDN. I have been on 0.1mg and it's ruined my sleep completely. Last two nights I have had to take valium, last night I slept for 4.5 hours. I don't think I can continue. It's like the sleep wave at night doesn't arrive even though my body is showing all the signs it's exhausted. I was already a poor sleeper needing melatonin, CBD and valerian to sleep so perhaps it makes sense.

 

[Heart Face]

Are you taking it at night or in the morning?

 

[Sequestered Hog]

Are you taking it at night or in the morning?

In the morning

 

[Heart Face]

If you can’t lower the dose if you’re not making your own LDN, are you able to take it every three or four days until you get used to it?

 

[Sequestered Hog]

If you can’t lower the dose if you’re not making your own LDN, are you able to take it every three or four days until you get used to it?

Yes, I am going to trial once a week. It's impossible to continue with such bad insomnia as it flares up my symptoms. Then if after saying a month ands half I'm still not sleeping after taking 0.1mg ill concede it's not for me.

 

[Sequestered Hog]

Well, it's now day 6 since stopping ldn. My sleep is still ruined. I'm getting 4-5 hours only if I take sleeping tablets. I'm wondering how much longer this will continue, it's making me highly unwell. Regret trying ldn massively.