Further scientific research on LDN

[Rosa Amor]

I recently read an article on the Phoenix rising blog about the scientific research being done into the effectiveness of Low Dose Naltrexone (LDN) as a treatment for M.E. I'm interested in learning more and am wondering if anyone can recommend any further information on it? I'm particularly interested in the scientific research being done into it. Podcasts or shorter written pieces would be particularly appreciated as they are the easiest ways for me to engage with information at the moment. Thank you in advance for any links.

I've also been reading some of the threads on LDN in the community forums on here. I tried LDN many years ago and experienced initial improvement especially in my fatigue and ability to walk. Unfortunately I had a bad crash due to a tooth infection which then required surgery for a hole in my tooth, insomnia (possibly caused by antibiotics I took for said infection upsetting my gut microbiome), scoliosis pain which required physiotherapy and period problems involving serious and repeated vomiting. This crash lasted several years.

For the last few years I've been experiencing a period of stability and improvement. In May, sadly, I caught a ears and throat viral infection which lasted three weeks. This cost me my ability to walk which I'd only recently regained and caused me to have to drop out of university. I haven't had anything like as bad a relapse as the one I previously mentioned. I consider this to be due, at least partly, to still being able to eat healthily. I'm still not quite back to where I was but am reasonably confident of improvement and, hopefully, regaining what I've lost in the near future. I'm considering taking LDN again as a pick-me-up to help me get back on track, because of the initial improvement I experienced when I first took it. However I am also scared of taking it due to the crash even though, as I say, there were plenty of other reasons for it.

 

[YippeeKi YOW !!]

I recently read an article on the Phoenix rising blog about the scientific research being done into the effectiveness of Low Dose Naltrexone (LDN) as a treatment for M.E.

If I'm remembering right, that's a fairly old blog post.

LDN is a lively subject here, you should be getting some ore current, pretty informed answers fairly fast.... I'll tag in a few people who might get the ball rolling for you .....@Pyrrhus @Hip, @Shanti1,@Judee, @IThinkImTurningJapanese

 

[Rosa Amor]

Thank you @YippeeKi YOW !!

If I'm remembering right, that's a fairly old blog post.

LDN is a lively subject here, you should be getting some ore current, pretty informed answers fairly fast.... I'll tag in a few people who might get the ball rolling for you .....@Pyrrhus @Hip, @Shanti1,@Judee, @IThinkImTurningJapanese

 

[IThinkImTurningJapanese]

I know very little about LDN, and have no experience with it. I kind of equate it with what I do know about Klonopin. I was helped by small doses of Klonopin, but when I was cut off from access it was a nightmare.

If I didn't have the meds I'm taking, I would try LDN from what I've heard about it. It doesn't sound like there's much risk, and perhaps much to gain.

All of us need to find some, even it it's small, improvement in our condition.

 

[Judee]

I haven't tried LDN but I think @Strawberry and @NickMDal have both been helped by it though I remember Strawberry saying very low dose.

@godlovesatrier had a negative experience on it where he said it made him very depressed, iirc. There was also one other person who had a negative reaction but I can't remember who that was. Sorry.

 

[Rufous McKinney]

LDN has helped me, 3.5 mgs. I never had any adverse side effects. Did not vary my dose.

 

[Wishful]

I skipped a dose, to see whether the aches returned. Yesterday was definitely hampered by pain in those front thigh muscles. I took my dose, and this morning I enjoyed a nice walk (the beavers had done some major construction since I'd last visited). LDN is still quite wonderful for me. Since you don't suffer from those pains, it won't do that for you, but it could work on some other symptom. You paid for the pills, the chance of a bad reaction is--from reports here--quite small, so it's more likely to help than to harm. Anything has a potential to trigger a long-term crash, so I expect that the chance of LDN doing that for you is not significantly higher than from any food or drug that you haven't tried yet.

I do admit a bias towards trying new things. I've had several really good results, and no bad results that lasted more than three days (and that example is dietary fibre, which I doubt most people would consider high-risk).

 

[Rosa Amor]

Thank you to everyone who has replied. I've decided to try taking LDN again but starting at a very low dose and increasing very gradually. I already have some 1ml syringes with 2 hundredths of a ml notched on them. Hopefully I can get a prescription in the New year.

 

[Wishful]

You prefer sticking needles into yourself to taking a capsule? For me it works on my brain, so taking it sublingually is probably better than injecting it would be.

 

[Rosa Amor]

You prefer sticking needles into yourself to taking a capsule? For me it works on my brain, so taking it sublingually is probably better than injecting it would be.

I meant oral syringes. I'm not intending to inject myself with anything 💓.

 

[Wishful]

Ah, I haven't encountered oral syringes before. My LDN comes as capsules mixed with lactose. Liquid drugs seem more likely to get contaminated. I suppose it comes in a rubber-sealed container that you stick the syringe through? I'm just curious about why it would be offered in liquid form when a safe powder form is available.

 

[Rosa Amor]

Ah, I haven't encountered oral syringes before. My LDN comes as capsules mixed with lactose. Liquid drugs seem more likely to get contaminated. I suppose it comes in a rubber-sealed container that you stick the syringe through? I'm just curious about why it would be offered in liquid form when a safe powder form is available.

I'm sure the containers will be hygienic. According to the pharmacist we contacted, they recommend starting off with liquid and moving onto capsules once the amount is at least 1.5 mg. I'm genuinely touched by your interest and concern, thank you 💙💙💙

 

[Wishful]

My starting dosage was 4.5 mg, so there was no suggestion of liquid form. I do trust pharmacists, especially the compounding ones, about how drugs should be taken. I don't think they get bribed encouraged to convince patients to take more of the drug than necessary, and they are probably at high risk of legal action if they give bad advice.

 

[Strawberry]

I haven't tried LDN but I think @Strawberry and @NickMDal have both been helped by it though I remember Strawberry saying very low dose.

@godlovesatrier had a negative experience on it where he said it made him very depressed, iirc. There was also one other person who had a negative reaction but I can't remember who that was. Sorry.

Yes, Judee is right that I have been helped with ultra low dose. I was on .5 mg (1/10th what many here take, 1/100th of a pill) and have done ok. Just upped it to .75 and slight improvement again.

For me, it isn’t a miracle. But I don’t ever want to be without it again.

 

[AquarenaJane]

Ah, I haven't encountered oral syringes before. My LDN comes as capsules mixed with lactose. Liquid drugs seem more likely to get contaminated. I suppose it comes in a rubber-sealed container that you stick the syringe through? I'm just curious about why it would be offered in liquid form when a safe powder form is available.

Compounded LDN is quite expensive. I started taking it about 6 weeks ago. Started at .05 now I am up to 2.5mg. I still have a lot of pain, but it doesn't start until the afternoon. I got a prescription for the 50mg from a regular pharmacy, 30 for $29. One tablet crushed and mixed with 50mg of distilled water (It will keep in the frig for 90 days) using a no needle syringe measure out what I need, right now using 2.5mg. Very inexpensive way to take LDN. I'm hoping it will work for me. My head is a little clearer, it doesn't affect my sleep (I take it at night)