I worked with LDN probably 10 yrs ago or so and the FIRST dose did wonders, I was like a new person. Subsequent doses did NOTHING. I never got beyond a very low dose, forget what the dose was. I think back then the goal was 4.5mg and I never got even close to that. Gave me horrible constipation too.
I have read and known many MS patients take it and get good relief for MS, I attempted to get my sister to try it and she didn't. Sadly, she passed late last year at 68, took all the drugs the docs gave her.
If it's working for some, keep using it.
I am sorry you did not get relief. There is nothing like getting excited and hopeful about a possible treatment for relief of symptoms, only to find it does not work, even if it does work for others. :-( Hope you have found something else to ease the suffering. (if there is such a thing?)
I have had good pain relief from the LDN. Still have all the other ME symptoms. The relief actually has been miraculous. It is as if someone just switched a switch and most of ONE type of pain was gone. Now, don't get me wrong, I have NOT tested it through exercise or pushing myself by trying to make a big family dinner or anything. The jury is out on that cuz I am unable to do most anything right now, but, before the LDN, I got the pain day in day out no matter what I did, PEM just made that pain a ton worse. So, we'll see.
I am pretty skeptical as nothing has ever relieved my suffering before beside the narcotics.
Also, I am wondering if anyone else feels another type of pain while on the LDN? I have had to take acetaminophen here and there for some weird neurological type pain. I am also unsure what to do about other pains I have. I have severe spinal degeneration (started when I was a teen) and have a bone spur stuck into my spinal column, so I have pain from that. What do others do for pain that LDN does not take care of, because, as I understand, you cannot take narcotics along side LDN.
And, jaminhealth, are you meaning to say that your sister took her own life using her meds? If that is true, I am sorry! Sending hugs! My father did the same thing. Broke my heart. I think he had undiagnosed ME. Same symptoms as me.