Low-dose Naltrexone articles and experiences

Ah, yes, I understand your hesitance with trying out new drugs when you are very sensitive to them.

I tried to do some research too before making a decision of trying LDN, but it seems experiences are quite divided, so it's hard to know what to do, isn't it? I do hope there will be some proper clinical trials soon!

Thank you for your kind words. I hope you find the right approach for you regarding what to try out, and what is best to avoid.

 

Yes, exactly.
The experiences with LDN are very divided. I do not know what to believe. But that applies to everything regarding ME / CFS.
Feel free to give us an update at a later date. Good luck in the meantime

 

Hi Kalliope! When LDN works effectively for an individual and they’re taking thyroid meds, apparently it may be necessary to reduce the dosage of thyroid medication as the LDN can help your thyroid gland to start producing normal levels of thyroid hormones. Just something to be aware of.

 

Thanks, @hinterland - I was not aware of that. Do you know of a source for this?

 

No problem. I read this in the low dose naltrexone patient information leaflet from Dickson Chemist, Glasgow. Scan attached below, hope this helps.

 

That's brilliant. Thank you @hinterland !

 

When I asked for some to try, my doctor was fine with prescribing it, because it's at such a low dosage that the chance of bad side effects was negligible. It worked extremely well for me, blocking my neuropathic pains, but didn't affect any other ME symptoms. After a year or two on LDN, I no longer needed it because the neuropathic pains had stopped. The minimum effective dose I worked out for me was 2.5 mg sublingually (needed ~1/3 less that way) alternated mornings and evenings every second day. At such a low dosage, any unnoticed side-effects from it would have been dwarfed by the health benefits of the exercise I was able to do without the pain. LDN sure improved my quality of life.

 

I tried NDL for several months. For many years I've had a foreearm itch that was not relieved by any medication. LDN seeemed to fix that. One the other hand, it seemed to leave me with a numbness. Eventually I just stopped taking it. For me, it is one of many medications that provides a temporary enhancement of functionality but only serves to wear one down in the longer term.

 

I tried LDN back in 2015 and it didn't do anything for me.

 

Merged thread

Making a case for LDN (Low Dose Naltrexone)

So I've finally seen a reputable consultant and he wants to prescribe
A b12,
B LDN
C aciclovir
I nearly fainted at the private prescription quote so want to make a case for the GP. Even if I self find this first batch I can't going forward long term.

Has anyone in the UK been able to Persuade GP to prescribe and get LDN or aciclovir funded on the NHS? I'm housebound so less bothered about the b12 as can't make it to the surgery to get jabbed weekly anyway and my b12 was always comfortably in range so difficult to argue)

If so what research papers / articles were most useful has there been a LDN trial yet. I am not good at succinctly explaining the medical theory of why this is a good strategy as my memory is so poor and I get totally stressed out even having to interact with medical professionals after past difficult experiences.

 

I brought this Medscape article to my doctor when asking to try LDN. It sums up a bit of the current knowledge about ME and LDN, but doesn't conclude regarding efficiency. However, I hope it gave my doctor a bit overview of the theme. He agreed to try.

https://www.medscape.com/viewarticle/926611

I've jabbed myself with B12, but take tablets now.

Good luck!

 

I was able to get a repeat prescription of the latter from GP after recommendation from Neurology consultant.

It was speculative, I'd taken it upon myself to trial the drug for months at a time and felt like whilst taking it I had remission of unusual neuropathy symptoms, some of which had crossover with previous obvious HSV1 flares & involved increased fatigue. Neurology went along with my reporting and didn't see the harm in continuing, suggesting there was an outside chance of a wider-spread HSV or similar infection. So there was a loose indication for it, more so than just a shot in the dark for "CFS", which I guess a GP might struggle to justify.

If it was actually helping me I doubt it was a result of any targeted action against HSV or whatever. Perhaps some wider effect that anti-virals can have, if anything.

 

The NICE committee looked at the evidence for drugs for ME and found nothing justifying recommendation. I would question how a consultant recommending these things can be 'reputable' to be honest.

In general terms:
I see no point in taking B12 if levels are normal.
Naltrexone may do no great harm but as far as we know it is just as likely to do harm as good.
Aciclovir, I would not prescribe without solid reason because it can produce serious adverse events. From what I can remember the evidence on antivirals for ME is pretty convincingly negative. If there was a useful effect it would have been demonstrated in an adequate trial by now.

There isn't a theory that holds water.

 

Sorry I struggle with remembering acronyms and abbreviations, so if anyone else struggles like me LDN stands for ‘low dosage naltrexone’. When I was searching for LDN I came across this article relating to its use in fibromyalgia:

“The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

 

Anyone severe have to stop using LDN for a week?
How did it affect your sickness?

Looks like the orders at compound pharmacy got mixed up and I’m gonna go a week without.

Pretty scared it leads to a crash and makes me unable to use my phone again, and then, scared I don’t recover back when starting it back again.

 

I did this after running out and was fine. I had worse symptoms but didn't full crash. It was uncomfortable and not very pleasant but manageable in the end. I'm top end severe.

 

I've tried it twice. Through the Scottish pharmacy that does the private consultation option.

Both times I had issues with viral reactivation. But it becomes so intense I can't sleep and go backwards. Pretty confident it's ebv every time. Very few doctors seem to understand how to treat chronic ebv infection I don't even know of that many studies showing what chronic infections look like. So I don't see how ant of us with chronic ebv will get that under control. My Dr recommended I take an immune stimulant for long covid. But I don't tolerate any of them. He recommended imunovir and that elicits and even stronger reaction than ldn. Maybe one day there will be a proper treatment for ebv?