As I read these threads and others I notice a lot of variation in response to LDN. I too have had a severe reaction to my initial 2 weeks on LDN. I started at a higher dose, took a few days off, restarted at .5 mg then 1.5. I've been suffering a severe reaction these last few days; headache, nausea, joint pain, sweats, and more. It feels like the worst flu ever, man am I hurting!
I'm highly encouraged by the positive stories of LDN, they give me great hope. After 14 years of ME/CFS, hope is all I have. Without the benefit of more research and large scale clinical trials, these forums are all we have. So everyone's feedback and experience is very helpful and greatly appreciated.
I'm not a medical professional but I wonder if these initial bad reactions are some form/type of a herx reaction. If it was an allergic reaction to the drug itself, I'd assume that would happen immediately after the first dose, and symptoms would not last so long after stopping. But if LDN initiates some type of immune system boost, causing more pathogen destruction, subsequent toxic dumping into the bloodstream and more immune reaction, then that would fit with a herx theory. And if that's the case, it would bolster the theory of an underlying primary pathogen cause like a virus, bacteria, protozoa, epstein barr, xmrv, lyme, etc etc.
Truth is, I don't know anything for sure and the more I read it appears no one else does either. But I'm encouraged by the ongoing research, forums and discussions like this.
To anyone out there suffering from an initial bad reaction to LDN, you have my sympathy. I appreciate how horrible you must feel. I've stopped the drug 2 nights ago and this is my 3rd day feeling excessively bad, although this morning is less severe than yesterday, and I now feel this will pass. Hang in there, it will pass, you're not alone.
Personally the advice that resonates with me about this initial negative reaction is to STOP taking the drug completely and allow all symptoms subside. After a severe reaction, it makes no sense to continue taking the drug at any level, even a dramatically lower dose. But again I'm no Dr and I only have the experience of one. For me personally I still have great hope this drug will help me. I'll wait till I feel fully recovered from this event and re-start dosing at .25 mg every 3rd day for at least a few weeks before increasing the frequency and dose by .25 mg, and stop completely at any sign of distress.
Hope to you all.