Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Short term use LDN for CFS and Hashimoto's?

Discussion in 'General ME/CFS Discussion' started by 2Cor.12:9, Jan 13, 2016.

  1. 2Cor.12:9

    2Cor.12:9 Senior Member

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    I'm so conflicted about LDN! I've been on this stuff for 5 months and am still out of commission.

    I started it because of a bad CFS relapse but I also have Hashimoto's and now suspect that a Hashi's flare may have triggered the CFS relapse. LDN has improved pain, cognitive function, and sleep, but it has caused me to develop eczema for the first time ever. LDN has NOT helped the fatigue at all and even made it worse. Cutting back from 4.0 to 1.0 helped some but not completely. But then, I felt awful when I started.

    I'm wondering if I should try quitting the LDN. Has anyone received the benefits ofusing LDN short term and then been able to quit it without losing the benefits?

    Thanks!
     
  2. xrayspex

    xrayspex Senior Member

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    u.s.a.
    I did it for 6 months and it helped pain some, I wouldnt say it helped cognitively and I think it tied into developing more food sensitivities because my brain reacted to even a minute dose of LDN as though it was higher dose naltrexone-- is my theory-- and would try to block anything that created endorphins---which eventually made me feel more depressed than I ever recalled....I woke up one morning feeling sickly depressed in winter and knew no way I was going to sustain that so went off it and was the happier for it. Its not really a fair comparison tho because I had been on a med that worked well for me in a lot of ways before that that I had to go off of for LDN and I had that to go back to which was good ( before it was taken off the market). If you want more info feel free to private message me. I also think I am an outlier even among outliers so perhaps my experience isn't that transferrable. I think I was on .5 and less and I had to switch brands at beginning due to being sensitive to inert substance in first pharmacy"s LDN.
     
  3. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Thanks @xrayspex - It's not easy finding people who gave LDN a fair shot and felt better for stopping - Mostly you just hear all good stories about it - which I'm happy to hear for everyone's sake.

    My problem is that my CFS (30yrs) had been "fairly" tolerable - functionality averaging 70% the past 20 yrs but having gone into the worst relapse since I first got sick (bedbound) I was desperate and tried LDN. Who knows how much was due to a Hashimoto's thyroid attack and how much was other CFS factors. And who knows if I would have pulled naturally out of the remission without LDN or if I will get worse if I go off.

    We read our brains out and yet it still remains a mystery.
    I know that I definitely felt better lowing the dose from 4.0-1.0. I stayed at 4.0 for 6 weeks and the fatigue was even worse and I felt sicker than ever.

    Thank you for sharing your experience!
     
    xrayspex likes this.
  4. xrayspex

    xrayspex Senior Member

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    no prob, it gets old having everything be so complicated eh
    keep us posted on what happens
     

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