I've started taking LDN at 1.5 mg at night. Initially, I felt wonderful but now I'm in PEM. The cancer survivor who told me about it says I need to increase the dosage.
Is anyone using LDN in their treatment regimen that can advise me?
Thanks so much for the guidance. I will talk to my NP and see about getting 0.5 capsules so I can experiment.You've possibly overdone it due to feeling so much better. You still need to pace.
Rest up and get back to baseline then see how the LDN is working for you. If you feel it's not working as well as it could be try raising your dose by 0.5mg every 2-4 weeks until you reach the dose that works perfectly for you.
I've been on it for 27 months and it's been nothing short of a miracle for me.
So headache is a sign that I'm taking too much LDN? I put nutritional yeast, protein powder, greens, kombucha or kefir, and electrolytes in a smoothie I make most days. I think I'm okay as far as B vitamins and AA go, however, I appreciate the link and advice.You can gradually increase the dose to 4.5 in .5 increments. I couldn't get higher than 2.5 and 1.5 worked fine. LDN has no effect on PEM. So if you have no headache and feel ok on 1.5 I'd stay there. Taking thiamine/riboflavin/amino acids eliminated my PEM. Likely genetic but cheap test to see if it helps. You'll know within days. 200-300mg B1/B2 and I used Solgar Essentila AA. Here's the details: https://www.healthrising.org/blog/2...-pem-chronic-fatigue-fibromyalgia-long-covid/ Hope it works for you!
Hi. I have been taking LDN for around 12 months and slowly increasing the dose. Everyone is different and for some people they only need 0.1mg to notice a difference. I am currently taking 7mg which is quite high but I think I am finally noticing a difference. I can manage a bit more and PEM is less in severity and length. My advice is to listen to your body, prepare to be going up and down in dose until you find the 'sweet spot' and be patient. Check out facebook for groups that are specifically me/cfs and LDN too. Good luckI've started taking LDN at 1.5 mg at night. Initially, I felt wonderful but now I'm in PEM. The cancer survivor who told me about it says I need to increase the dosage.
Is anyone using LDN in their treatment regimen that can advise me?
Thanks for your input. Lots of great advice from you and others here. I really appreciate it. Not quite ready for a complete elimination but will keep it in mind.I take 4.5mg of LDN each evening and it's definitely calmed down the inflammatory response that was occurring in my spinal cord. A big relief to have that managed so I can get on with life. I had one flare last week for the first time in 6 months so would consider upping my dose if that happens again. It took about 3 months to build up to 4.5 and feel the difference.
What also helped with my fibro pain was identifying all of my food allergies (gluten, dairy, nightshades and MSG). Importantly, it seems that gluten was driving leaky gut which was contributing to my PEM. Nightshades cause chronic inflammation within hours and shooting nerve pain for me. What was difficult is that for years I would take one or two of these out together and not notice a huge change but it wasn't until I did a major elimination test and took everything that was possibly an issue out, did I notice the big difference.
Stabilising my blood sugar also helped a lot.
Taking Oral Rehydration Solution most days helped with muscle pain and orthostatic intolerance.
After 20 years of fibro and ending up on disability, I'm now pain free, full of energy, working again and doing strenuous exercise most days. Find your root causes then treat them. The info here on Health Rising is the best I've found.