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LDN - how's it working for you?

I've been on LDN for...


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I have been on LDN (3.5 mg) for about two years and praise the Universe for the Doctor who cared and knew and helped me get it. I don't think I would still be here, without it. So it took a whole suite of miserable chronic symptoms there pretty much every day and changed them into: those bad things now happen mostly during Acute episodes, crashes, ill with other stuff etc. It is a miracle. And of course all that great health insurance I have won't pay for that!

I don't know if its helped me with sleep because frankly I gave up. I use a couple of other things to knock me out. But I know my deep sleep cycle isn't happening. Repairs aren't happening. On a good day I have about two hours midday to function.
 
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Hi all,

my wife is a CFS sufferer and we havent yet tried this option, she recently asked her GP ( we are UK based and it seems she cannot prescribe it and it goes to some special team...for which there's a waiting time of over a year. ) Can anyone UK based tell me a good source to buy LDN for her to try out?

Thank you
Did you manage to source this for your wife? Let me know if not I’m uk based and can send you the info on where I recently got it from and costs
 

Sherpa

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I've been on it for like 2 weeks now at 2mg per night at 9pm. LDN reduces my neuroinflammation. Just feel better overall. Doesn't stop stress from messing with my groove though.

side effects: My sleep was disturbed for about 2 weeks where I woke up around 3 am.. but it seems to have normalized over the past
 
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My sleep was disturbed for about 2 weeks where I woke up around 3 am.. but it seems to have normalized over the past
I've been on 3.5mg LDL for about four years, it has so helped me. I sleep better than I used to. If I do wake up in the 3 am stage, I can find I have a big headache. But I also just ignore it and seem to go back to sleep. I think your experiencing the couple of hours where the receptors are blocked. Since it helps me so much, I just sort of ignore the head ache. Its not the Fibro headache. Different.

LDL continues to reduce key symptoms that are really intolerable, so now its only totally intolerable, some of the time!
 
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I've been taking LDN for almost 2 months, and just increased to 3mg. My sleep is marginally better, but that's the only improvement. I have a lot of pain and am getting no relief. It's possible I have a bit more energy, but I also started on a tiny dose of NDT a month ago, so that might be helping there (or it could be both).
 
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I have been on LDN (3.5 mg) for about two years and praise the Universe for the Doctor who cared and knew and helped me get it. I don't think I would still be here, without it. So it took a whole suite of miserable chronic symptoms there pretty much every day and changed them into: those bad things now happen mostly during Acute episodes, crashes, ill with other stuff etc. It is a miracle. And of course all that great health insurance I have won't pay for that!

I don't know if its helped me with sleep because frankly I gave up. I use a couple of other things to knock me out. But I know my deep sleep cycle isn't happening. Repairs aren't happening. On a good day I have about two hours midday to function.
How much is good amount of deep sleep cycle?
 
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How much is good amount of deep sleep cycle?
Not sure, but I understand many body repairs occur in the deep sleep cycle. I also directly experience major insulin resistance when I sleep poorly, its affecting the blood sugar, and if I'm actually have an awake episode, I will just be starving early in the morning as the brain consumes many many calories. "Our Non-refreshing Sleep".
 

stefanosstef

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Somewhat better sleep, much reduction in brain fog (probably due to anti inflammatory mechanism), small reduction in fatigue, unknown effects on PEM because I don't dare trying to exercise or being overly active, but I am planning to.No side effects for me.
I took it for 2 months, did a couple of weeks break and I am back on it for 2 weeks.Current dose is 2.5mg.No side effects for me but I think that if I up the dose too fast the neuroinflammation returns, happened 2-3 times but it could have been random.
 
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Do you know any reliable online shops for LDN / Naltrexone without doctor prescribtion?
I am also asking because of shipping reliability, idk how LDN is handled by custom check
 

stefanosstef

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Do you know any reliable online shops for LDN / Naltrexone without doctor prescribtion?
I am also asking because of shipping reliability, idk how LDN is handled by custom check
I bought from Alldaychemist with no issues but I easily got a prescription for the new box from a doctor that didn't know what LDN is, but she thought that 2-3mg of naltrexone is no issue at all.
 
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During one of the worst experiences I’ve had of this illness, my brain found it incredibly hard to process simple tasks such as washing my hands, styling my hair and even tying my own shoe laces. Just a simple thought of having to style my hair would result in the most horrendous feeling In my brain-a feeling I can’t describe unfortunately. That’s all I know, I had to shave my hair (lucky I guess as I’m a dude.)

Anyway, LDN is the reason why I can shave my beard again, style my hair, wash my hands etc etc without any hassle from my ‘nut’ (brain). Hope this helps someone.

EDIT: I stopped taking LDN after only a few short months of use due to sickness that I think was to do with my immune system, as I had introduced LDN and cannabis into my treatments at a quick pace within a short period of time on one another, and I just think I rushed things. I’ll be looking to try LDN again soon in a more patient manner.
 
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stefanosstef

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LDN takes care like a boss the brain fog, which is usually due to chronic low grade neuroinflammation.Cannabis certainly boost the immune system, I don't know about brain fog though, but back then when I was consuming regularly (homegrown, no tobacco) I never got sick for 3 years and that's a record.

I have it in the refridgerator and when I forget to take it, I always realize it the next day because I start having neuroinflammation issues (brain fog, heavy and red eyes that sting, short term memory problems, very hard to focus, noise and light sensitivity, lack of patience and self-restraint, very easy to get irritated.Accompanied usually with increased body fatigue and a feeling that my heart beats faster and with stronger beat.
When I take it consistently though, missing a couple of days doesn't affect me negatively.Currently at ~3.3mg.
 
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I’m so glad I saw this post because my doctor recommended I research (he knows I love to get every possible detail on treatment) LDN and start it sometime soon. I do have a proven overactive immune system - cause still unknown - will LDN modulate it? I’m worried I will be opening up a can of worms by starting to take it.

Also , my pcp mentioned that once you start, ideally it is a long term commitment.. how true is this?
 
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I do have a proven overactive immune system - cause still unknown - will LDN modulate it? I’m worried I will be opening up a can of worms by starting to take it.

Also , my pcp mentioned that once you start, ideally it is a long term commitment.. how true is this?

I've been using 3.5 for about 5 years. If I run out (which I try very hard not to)...about 5 days, lots of inflammatory symptoms start to re-emerge which are far less troubling on the LDN.

I can hardly tolerate any pharmaceuticals but was UNPHASED by LDN. (I also know it helps some and not others).

So I would encourage you to try it and don't need to be too nervous.

I am not aware any long term use issues...you taking a very small amount of something.
 

stefanosstef

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I’m so glad I saw this post because my doctor recommended I research (he knows I love to get every possible detail on treatment) LDN and start it sometime soon. I do have a proven overactive immune system - cause still unknown - will LDN modulate it? I’m worried I will be opening up a can of worms by starting to take it.

Also , my pcp mentioned that once you start, ideally it is a long term commitment.. how true is this?
I wouldn't worry, no serious side effects if any.Dont overthink it.In case it causes insomnia at the beginning you can take it earlier in the day with no difference in effectiveness.Start at 1mg* and increase 0.5mg every week, consider 4.5mg the max dosage but that isn't set in stone.If you experience side effects reduce to previous tolerated dosage.If it relieves your symptoms you can stay at that dosage for a while but it doesn't hurt to test a bit higher just to see if it gets better or worse.It's not the higher the better, most people stay at 2-3.5mg.Good luck!

*If you have Hashimoto's start at 0.5mg
 

debored13

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curious if anyone here uses LDN plus opioid analgesics

The main problem with opioid analgesics is development of tolerance. Its inherently a problem for a few reasons. One, cost. two, tolerance to analgesic /therapeutic effects develops faster than tolerance to side effects of various kinds. For example, you could develop tolerance to the painkilling effects of oxy, but not the respiratory depression or constipation, thus making the toxic to therapeutic dose ratio way smaller.


There are two main types of medication that I can think of for attenuating the development of opioid tolerance. I believe @Hip has already covered NMDA antagonists, but the other class of medication is opioid antagonists (at low doses).

(interestingly, kratom has all of these: opioid agonists, low doses of opioid antagonists, and nmda antagonists, all in it. If i wasn't so intolerant to the stimulant effects , I'd say its a perfect med for me)

I had read a little on ultra low dose naltrexone and low dose naltrexone for attenuating opioid tolerance and side effects, and i was prescribed it for pain/inflammation anyway, so I have decided to try and use it to help keep my tolerance reasonable. It seems very promising but I don't have any idea if there's a bunch of solid evidence on the dose range or schedule needed to totally reset tolerance.



[This](https://www.ncbi.nlm.nih.gov/pubmed/20398374) study shows ultra low dose naltrexone attenuating morphine tolerance in rats. [This one](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469510/) shows that adding uldn to oxycodone attenuates hyperalgesia that can occur in long term opioid use for chronic pain. There was a drug in development, oxytrex, that was a combination of oxy and ultra low dose naltrexone, to help attenuate side effects/tolerance to oxy, idk why it never came to market.

ULDN is a way lower dose range than LDN. It seems like LDN is not used in these studies bc it is more likely to either block some of the analgesia, or precipitate withdrawals, which could be nightmarish especially in chronic users. But since im not dependent on opioids, im more comfortable getting near that boundary, and it seems like the higher dose range of LDN might be more helpful in actually reversing tolerance, whereas uLDN only slightly attenuates it. I also read a now-deleted post from r/opiates in which someone said LDN, not uLDN, totally keeps them from gaining tolerance, but they had to start the LDN before the opioids and take it daily.

Also kratom users sometimes take stem and vein kratom, which has more of the opioid antagonists and less agonists, to reset their tolerance, and it seems to work well.

I had an experience with too high a dose of LDN (I believe it was 1.5 mg) taken too soon after my opioid dose, seemed to cause dysphoria and negative symptoms. But when taken after the opioid effects totally wear off, it has few side effects, so maybe I should be dosing higher? My dose is usually like .5 mg a day.

The theory is that it upregulates opioid receptor density in response to a partial blockade. this is part of my theory of why LDN works for some chronic pain patients, on its own, that it increases opioid recceptor density so ones sensitivity to ones own endorphins is way higher. From personal experience/anecdote in the past i felt like it took about five days of 1 to 1.5 mg doses of LDN before i was experiencing "getting extremely high off my own endorphins". I did experience some episodes of agitation, insomnia, and hypertension from the LDN, but I don't think thats normal, and the hypertension wasn't too bad.


So all in all, it seems like there are a few studies on uLDN for this purpose, promising but not a ton of evidence, a bunch of anecdotes, and very few studies on LDN for resetting tolerance (although there are studies on its use as an antiinflammatory and for chronic pain, like [this one](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/) , from which we might infer it could help with tolerance?)


This was a little bit rambling but I guess I'd be interested in any form of evidence on this topic, anecdotal or published, since the existing evidence is so scant. Has anyone here had experience with uldn or LDN for tolerance? Has anyone found good posts on reddit or forums about it? or good studies?
 

Diwi9

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@debored13 just revived this thread and so I feel compelled to share that while LDN did a ton for me when my illness was in an "acute" stage. It does absolutely nothing for me now that I'm able to tell.