• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Does LDN lose it's effectiveness over the long term?

Messages
10
LDN is one of the treatments that I started on pretty quickly after being diagnosed with CFS. When I first titrated up to the 4.5mg dose I felt absolutely amazing. My sleep was incredibly refreshing, my brain fog was gone, I was very energetic and motivated, and at work I was really engaged and practically dancing while working at the computer. Over time the effects became less obvious though. Now two years later I continue to take it, but it's not clear that it gives me any benefits. If I miss a dose, or even if I take a break for a whole week, I don't notice any difference. My doctor still seems to think that it's important that I stay on it though.

What are your experiences? Does it still seem like a clear win to you?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I started LDN in late 2009 stopped about 1 year ago. Insurance changed so not covered, just don't have the cash to pay out of pocket. I have not noticed a decline, yet, would probably get back on it in the near future. Guess when I take LDN again, could be interesting to see what happens :)

GG
 
Messages
10
Guess when I take LDN again, could be interesting to see what happens

Yeah, I wonder if having enough time off the drug before restarting would enable me to experience the initial euphoria again. I took a week off on two different occasions without any noticeable effect when I restarted, so that was clearly not enough time.
 

adelheid55

Senior Member
Messages
424
I'm on LDN for a year now. It doesn't take all muscle pain away a but it's really tolerable. And when I sometimes do too much I find myself in pain again. That's not a bad thing because I then know how much LDN helps me.
So for me it still works.
 
Last edited: