LDN success!

Just wanted to let you know - after 3 months taking LDN I'm feeling really great!! I've even moved house and not had a flare up!! It's amazing. I get the odd grumble in my joints and tendons (not surprising considering all the stress of moving and lifting heavy boxes etc) and I think 'uh oh here we go again' ...but it doesn't come to anything! I feel so grateful that I feel like my real self at last and no longer confined to bed all the time!

I noticed:

after 2 weeks: it was easier to feel happy about life

after 4 weeks: I noticed I had a much higher tolerance to pain

after 6-8 weeks: my immune system seemed to calm right down

I really recommend it. The only side effects have been vivid dreams, and when I was increasing my dose, and trying to find my best dose, I noticed I got a bit dizzy and heart racing, so that's how I settled on 2.0ml. I started on 0.5ml and increased by 0.5ml every fortnight until I found 2.0ml best for me. It's so amazing to finally find a drug that works for me. And it has none of the horrible side effects of the normal lupus drugs I tried. Hurray!!

If you've not heard of LDN I'll post some links about it in the comments below. It's not available on the NHS and I had to buy a prescription from a private doctor and I buy the drug from a chemist in Scotland by post.

15 Replies

  • Here's a video on Youtube about LDN

  • And here's another video:

  • Thanks for sharing dryad....still a drug...I guess when I can't get out of bed, I will try this maybe! I can live with the pain so far. I noticed I have been getting vivid dreams but not on any medicine. I also have heart racing occasionally. I have mitral valve prolapse. Right now I have terrible tmj for the past couple of days. Does this drug help with skin pain when in the sun? I have had a terrible time being in direct sunlight. Using sesame oil as a natural skin protectant. Helps. Dry eye? Does It take inflammation down in the entire body?

  • Hi Natura

    Yes it's still a drug but I'm so delighted that it feels nothing like being on a drug! It's such a low dose I guess. Yes it does seems to take inflammation down in the whole body - it seems to calm the whole immune system down and make it less over-reactive. I am in an LDN group ( on Facebook) where loads of people take it for Sjogren's, Lupus, RA, MS etc and say it's working well for them too.

    You can check it out here: facebook.com/groups/sjogren...


  • I am so happy for you. It's wonderful you are feeling so good on this drug.

    I did show the video of Dr Chris Searle to one of my consultants but he didn't think I should try it.

    All the best, still take it easy.

    Hugs 💐

  • My consultant didn't endorse me trying it, but he didn't tell me not to either. It's because it's not gone through large clinical trials for auto immune diseases at a low dose. However at a high dose of 50mg it has been through big trials and is widely prescribed on the NHS for other uses. It's a shame that our consultants don't know much about it, and that we're having to get hold of it through private doctors. I buy mine from Dr McCall who prescribes it widely for many autoimmune diseases with great results. He told me 4 months ago that I could be 'skipping about by the end of August' and I found it hard to believe him - but he was right!

  • Do you have any organ involvement with you illness .?

  • No I have had no organ involvement thankfully. Just that burning bladder thing - interstitial cystitis along with the joint pain, fatigue and Fibromyalgia. I only considered taking LDN after having a mega flare that put my in bed most of the time over 6 months earlier this year. My whole life was on hold. Now I have much less fatigue too.

  • Thanks I'm going to show my dr about this drug .x

  • I'd better warn you - many doctors will not be enthusiastic about you trying this drug, or my testimony. It has only had small clinical trials for autoimmune disease. However please tell them - more need to know about it's benefits!

  • I thought I should let you all know that since I wrote this post, the move and all that business has caught up with me and I've had a small flare up this week. I've felt exhausted and achey, and have not done very much. But I have to say that my pain levels are still lower than they usually would be if I was in a flare without LDN. I think the LDN is still making a big difference. But I thought you should know that it's not a miracle cure or anything, but it certainly helps.

  • I got a phone call from Dr Mc call today to let me know that my prescription for LDN is being faxed to chemist and med should be with me in 2/3 working days.

  • Thank you dryad for your post and i am hopeful about starting it so many thx.

  • Good luck with it! I hope it works for you. What dose are you starting on? Let me know how it goes. xx

  • I have to take 1ml daily and increase by 1ml weekly till i get to 4.5ml will let you know how it goes.

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