The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Need Advice Regarding LDN...

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Misfit Toy, Jun 17, 2016.

  1. Misfit Toy

    Misfit Toy Senior Member

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    My rheumatologist wanted me to start on LDN. I have been on the fence because I took it years ago and didn't sleep. Since I am not regulated on my thyroid meds, I was unsure but my GP said..."go for it." Well, I took .5 yesterday at lunch and was up most of the night. I am not even sure I slept.

    Does anyone take a smaller dose and should I even be doing this now considering that I am already so ill from the thyroid being out and not being optimal on my meds? I am not sure.

    The last thing I need is to not sleep. That is not even an option.
     
  2. Old Bones

    Old Bones Senior Member

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    @Misfit Toy I am among those whose sleep is disturbed by LDN, so I can relate to your concerns. I've never been able to increase my dose beyond 1.5 mg. Although it appears to reduce the stiffness in my hands (RA), it does nothing for my ME symptoms. The only thing I can suggest is taking it first thing in the morning (what I do) to see if this helps. I'm not sure many physicians realize how very sensitive ME patients are to medications. A dose of .5 is extremely low, but for us, the side effects at a dose many would consider "homeopathic" can be significant, as you are experiencing.

    I question why your rheumatologist would recommend adding another medication when you haven't established the correct dose of thyroid medication. The strategy my doctor and I have always followed is to make changes to only one medication at a time. Otherwise, it is difficult to know which med is causing which effect, whether positive, or negative. So, if it were me, I'd defer trying LDN until you feel confident you've achieved optimal thyroid management.

    Good luck. You're so right -- the last thing we need is an intervention that makes our sleep worse.
     
    Last edited: Jun 17, 2016
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  3. Sidereal

    Sidereal Senior Member

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    I wasn't able to tolerate even 0.5 mg of LDN without severe insomnia. I haven't tried doses lower than that.
     
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  4. Misfit Toy

    Misfit Toy Senior Member

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    I so agree to this. I don't think either doctor of mine is great at this point. When I mentioned it to my GP, I thought for sure he would say hold off, but no....he was all for me taking it which is odd considering that I am still so hypo.

    But, I am glad you said this because I think you are right. I need to get optimal first. I don't need two things going on at once.
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    I clearly need to read more about LDN. Why does it even cause insomnia and why is there a herx....so odd.
     
  6. Valentijn

    Valentijn The Diabolic Logic

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    A herx (jarisch-herxheimer reaction) is a set of very specific symptoms triggered by spirochetes being killed. LDN would not cause someone to herx, and someone without those infections (primarily syphilis and Lyme) would also not herx.

    The trick is to decipher what people mean when they call something a herx when it clearly isn't. Most likely they mean more generic side-effects. It's important to make the distinction because real herxing is something which must be endured to treat those specific infections. Whereas strong side-effects are often a sign to stop using a medication.
     
  7. *GG*

    *GG* Senior Member

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    I didn't sleep well last night also. I have been on LDN since 2009, but recently went to Internet pills since my Insurance doesn't pay for it.

    GG
     
  8. alice111

    alice111 Senior Member

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    Just thought I'd throw in my experience. I have ridiculous insomnia.. Ldn did not make it worse or better. I take it FIRST Thing in the morning.

    Ldn has reeeeeaaaaallly given me some improvements so I highly recommend it!!! (But of course we are all so different ) I started at 0.5 slowly worked up by 0.5 every two weeks to 2.5 if I go above that it's bad bad bad news, so for now that seems to be my sweet spot.

    Personally it doesn't seem to have impacted my thyroid or hashis whatsoever which I have found odd.. But u mentioned that so just thought I'd let u know!
     
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  9. parabola

    parabola

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    I gave it a long time but really couldn't tolerate the insomnia so now I take it when I wake up with no problems
     
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  10. alicec

    alicec Senior Member

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    I started with 0.5 mg and it was immediately clear to me that this was too high a dose. Insomnia was not particularly an issue, though there was some sleep disturbance which settled down. It was more flu-like symptoms and agitation.

    I experimented for a while before settling on 0.1 mg as the starting dose, staying on this for about 3 weeks before I started to increase slowly. After a couple of months I could increase more quickly but it still took me many months to reach the dose I am now on, 4 mg.

    However I agree with others. Get the thyroid meds stabilised before adding another potent ingredient. Otherwise you will never know what is causing what.
     
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  11. ahmo

    ahmo Senior Member

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    I started by opening capsule, taking match-head amount. I doubled that over the next days, working my way up. Initially restless sleep, but I've been very fortunate to not have insomnia after a few days. I did have detox responses, dealt with it in the way I do, w/ coffee enemas. I settled at 4mg. Great improvement in stamina. Good luck.
     
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  12. digital dog

    digital dog Senior Member

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    Definitely do not throw anything else into the mix.
    I have a bottle in the freezer minus 0.1mg! I took that first thing in the morning (actually it was at 4am in the morning) and that night I didn't sleep a wink. It was extremely severe insomnia and anxiety.
    I am prone to dreadful insomnia but this was hideous.
    I don't think I could even get a smaller amount in me. I used a syringe used to extract milk for babies from the breast as it was the smallest I could find.
    I had such high hopes for LDN due to my hashimotos and the fact that a lot of family members have autoimmune conditions but I am too sacred to try it again.
    It may well be worth trying but not until you get some stability.
    I also read that for most people the insomnia goes very quickly. I know it wouldnt with me though.
    Sometimes all we have to go on are our instincts.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    How did you get it down to .1?

    Yes, I need to get the thyroid stabilized before I do this. I need sleep and stability.

    Thank you!
     
  14. alicec

    alicec Senior Member

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    I dissolved a 50 mg tablet in 50 ml water (stable in fridge). This is approx. 0.05 mg per drop - so 2 drops.
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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    It's funny because I took it at lunch yesterday and had energy. Major energy for me as of late, but I was so pissy and cursing up a storm. Like someone said, agitated. It was great to have the energy, but also a little odd as I am not that energetic mostly.

    On the LDN forums, no one dissolves LDN like this. Only the ME community...we are so different than most.

    I am wondering what to put it in and how to store it when I eventually try it again.

    I am so grateful for PR.
     
  16. alicec

    alicec Senior Member

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    Best to protect from light. I use a brown glass bottle with screw-on dropper.
     
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  17. Misfit Toy

    Misfit Toy Senior Member

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    Perfect. Thank you!
     
  18. alice111

    alice111 Senior Member

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    @alicec you mentioned flu like symptoms how long did this last for you? Did you find you had to pair something else with the Ldn do avoid this?
    I haven't been able to get above 2.5mg because I chickened out when I had a severe reaction.. I never know what's herx and should be pushed through versus just plain bad.. :(
     
  19. Misfit Toy

    Misfit Toy Senior Member

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    Sorry to ask you so many questions! Where did you find the brown bottle? Can it be purchased?
     
  20. alicec

    alicec Senior Member

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    Maybe because I started really low and increased very slowly, the unpleasant symptoms were never really bad and maybe lasted 2-3 days. I didn't take anything else to counter them.

    If symptoms are too unpleasant, back off and stay on a more tolerable lower lower dose for several weeks before increasing.
     

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