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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LDN Stopped working?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by crypt0cu1t, Jun 13, 2018 at 8:24 PM.

  1. crypt0cu1t

    crypt0cu1t

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    So, I started using LDN as recommended by Dr. Chheda. It actually improved my condition from 3/10 to a 6.5/10 for two weeks then quickly stopped working.

    Is there any reason this would be? I actually thought I had a chance at recovering until it stopped working.
     
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  2. Moof

    Moof

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    Only that ME bodies seem to be able to circumvent many things that help initially. There may be a vested interested in remaining in the ME state that we don't yet understand – i.e, it's protecting us, or our bodies think that it's protecting us, from something worse.
     
  3. JES

    JES Senior Member

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    Yeah this is a typical response I get to all sorts of supplements. Sometimes even within 2-3 days the initial positive effect disappears. IMO basically this is a sign that the medication is not treating the problem itself.
     
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  4. PatJ

    PatJ Forum Support Assistant

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    Some people need to pulse the LDN. e.g. Take it one day, skip the next; or take it for one, skip two; or take it for two, skip one... I occasionally need to stop taking it for a few days then restart it to get the effectiveness back.

    This page on Dudley's LDN site lists reasons why LDN may not work and might be relevant.
     
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  5. perchance dreamer

    perchance dreamer Senior Member

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    Could it be that you need to increase the dose?
     
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  6. Wishful

    Wishful Senior Member

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    It stopped working for me too, after a year or two of very effectively blocking muscle aches. I've experimented with larger and smaller doses, but haven't found any variation that provides an effect. As JES said, this 'works for a short time, then no longer has any effect' is common for ME/CFS. Something in our bodies seems to adjust for the treatments and prevents them from working. Several members (including me) have reported full remission from prednisone...for one or two trials, then it no longer has any effect. It's just part of ME/CFS. In 17 years, I've found two treatments (cumin and T2 or iodine) that continue to work reliably for me. I can offhand remember five that worked only briefly.

    I wish that the things that make my symptoms worse had the same 'only has this effect for the first few times' response. ;)
     
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  7. Sushi

    Sushi Moderation Resource Albuquerque

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    Did she give you a schedule for slowly increasing the dose? It took me 4 months to get up to my effective dose.
     
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