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LDN - how's it working for you?

Discussion in 'General Treatment' started by jace, May 26, 2010.

?

I've been on LDN for...

  1. Less than a month - it seems good

    11.7%
  2. Less than a month - it's not nice

    14.0%
  3. 1 - 3 months - feeling much better

    7.6%
  4. 1 - 3 months - some good, some bad

    7.6%
  5. 1 - 3 months - feeling worse but hanging in there

    2.9%
  6. 3 - 12 months - it's great

    9.9%
  7. 3 - 12 months - not sure it's working for me

    8.8%
  8. 1 year and more - this stuff works for me

    13.5%
  9. 1 year and more - not sure it's worth it

    2.9%
  10. I used to take it but I gave up

    21.1%
  1. debored13

    debored13 Senior Member

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    Vermont, school in Western MA
    Low Dose Naltrexone is still naltrexone. naltrexone is an opioid antagonist. like the opposite of an opioid, if that helps you understand. It probably simulates mild opioid withdrawal, since it's blocking your endorphins from binding to opioid receptors to some extent. emphasis on to some extent, since it's low dose naltrexone, what should happen is that your opioid receptors upregulate to compensate, thus causing you to be more sensitive to endorphins. This is all very approximate so I wouldn't find it odd to feel like shit for the first few days and then start feeling better, even hypomanic.
     
    JeanneD likes this.
  2. debored13

    debored13 Senior Member

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    LDN probably also has effects on TLR4 receptors which are responsible for immune response and inflammatory cytokine release, so that's another thing I left out. sorry, very tired and brain foggy.
     
    flitza and JeanneD like this.
  3. Thinktank

    Thinktank Senior Member

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    Even a difference of 0.5 in dosage can make things better or worse.
    We ran out of the 1mg pills so my gf has been on 1.5 for the past 2 nights and she had trouble sleeping, that's completely opposite to the effect 1mg has, which drastically improves her sleep!
     
    2Cor.12:9 likes this.
  4. 2Cor.12:9

    2Cor.12:9 Senior Member

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    That's been my experience too. I've been on LDN 2 years, got up to 4 mg and had to back down to 1 mg. I've been on 1 mg for a year and its perfect. Tried going off and within 2 weeks I could hardly move from pain and stiffness.
     
    flitza and JeanneD like this.
  5. confetti11

    confetti11 Senior Member

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    Thanks @debored13 @Thinktank @2Cor.12:9 for your input. I really appreciate it. From everyone's input, there seems to be a point where the body says "nope" and you have to work the dose up to move past that.

    I guess I wouldn't have been surprised at all (because I can be extremely sensitive to things) if I hadn't taken this drug seemingly without incident before.

    I think things may be dying down except....is there any reason why this stuff would stir up gastritis? I only took about 5 doses before I stopped the first time (2.25 and 4.5) and then a few days after I stopped...the burning and burping started and it's still going on about 2 weeks later. I hope this just clears up on its own. I'm not exactly sure what's causing it. I feel like a whack a mole of symptoms.
     
  6. Nickster

    Nickster Senior Member

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    LDN has been helpful for my son Nick. It helps him with the fibro type pain. He takes 1.5 twice a day for the last year and a half.
     
    scienceshea likes this.
  7. JES

    JES Senior Member

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    I did notice an increase in acid reflux symptoms, which I think is due to increased stomach acid from this drug. This acid reflux increase came even when I was careful and started with 1 mg. But thankfully, as I wrote, it went away after around 2 weeks, probably my body adjusted to the drug in that time. I would be more concerned about other symptoms than stomach symptoms, stomach symptoms are a common side effect of many medications. I get them myself almost on every second drug/herb I trial.
     
  8. JeanneD

    JeanneD Senior Member

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    My daughter and I got this in the very beginning. Our doctor advised us to take the LDN at bedtime so we would be asleep during those symptoms. There's a biochemical reason why that happens and why it only lasts a few hours in many cases, but I've forgotten what it is in the ensuing years. Something about temporarily blocking certain receptors, perhaps?

    [ETA: I see @debored13 explained it above "...it's blocking your endorphins from binding to opioid receptors to some extent. emphasis on to some extent..."]

    Taking it at night worked like a charm. No more uncomfortable side effects.

    We were also told that the dark emotional sensation is a sign (in most, not all, cases) that the dose is too large for the stage of adjustment. In other words, back down and increase much more slowly.

    Anyway, I just kept taking it at night for years because why not? When the doc recently upped the dose, I needed to split it, so now I take the additional dose in the morning and have none of the uncomfortable side effects. Again, I'm increasing dose very slowly -- 0.1mg every day or two, starting at 0.1mg.
     
    Last edited: Dec 14, 2017
  9. JeanneD

    JeanneD Senior Member

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    I could not tolerate that much of a dose change that suddenly! This med requires slow increases in most PWME. Some people can do great on 1.5mg and do poorly on 1.7 mg even after a long (non)adjustment period. Dosing seems very sensitive in some people.

    Where are you getting 1mg pills? Where I am the minimum is 10mg and the LDN has to be compounded to get the lower doses.
     
  10. confetti11

    confetti11 Senior Member

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    @JeanneD that's interesting, thank you! I stopped it for now but will pick it up very small amounts at a time when I get a chance.

    Do you guys this this drug could do weird things to your cycle? I'm supposed to be menopausal (somewhere in that process) and I feel like I almost had a mini period this month, with some premenstrual symptoms and everything. I haven't had that for a while.
     
  11. JeanneD

    JeanneD Senior Member

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    Also menopausal and had no menstrual symptoms. Neither did my daughter who is child-bearing age. Can you be more specific about the premenstrual symptoms? They might be related to ldn.

    There are several reasons for post-menopausal spotting/bleeding unrelated to LDN. They are not particularly uncommon in the earlier stages like endometrial hyperplasia. It might bear checking into if it persists.
     
  12. confetti11

    confetti11 Senior Member

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    @JeanneD
    Not overly worried about it at this point. I've had spotting all through this time because of HRT, but this time, it mimicked more like a period. No subtle way to put it...my boobs hurt.
     
  13. JeanneD

    JeanneD Senior Member

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    Nope, nothing subtle about menstrual and premenstrual symptoms. :p Can't say either of us had that particular uncomfortable symptom. Sounds like a progesterone thing, but who knows?
     
  14. shicky

    shicky

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    Hi all,

    my wife is a CFS sufferer and we havent yet tried this option, she recently asked her GP ( we are UK based and it seems she cannot prescribe it and it goes to some special team...for which there's a waiting time of over a year. ) Can anyone UK based tell me a good source to buy LDN for her to try out?

    Thank you
     
  15. JES

    JES Senior Member

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    @shicky This website prescribes LDN based on online consultation with a doctor. The other option would be to order it without prescription from one of the well-established online pharmacies.
     
  16. flitza

    flitza Senior Member

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    Just a quick thought about the effects being cumulative as you suggested. I have heard that some people may have a slower clearing of their receptors and have found that skipping a day or two per week or taking on alternate days has helped...
     
  17. debored13

    debored13 Senior Member

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    i may try that, thanks

    the effects can be potent but unpredictable and have raised blood pressure temporarily, probably by raising ACTH... so while its occasionally a helpful get-out-of-bed tool, idk about regular use
     
  18. shicky

    shicky

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    Can you give me an idea of these well established pharmacies as I cannot find it available? Is the online prescription route a much more expensive one?
     
  19. Hazeleyes99

    Hazeleyes99

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    I spoke to a medical professional who has a dim view of LDN, due to it eventually leading to increased th17 cytokines, which is what happens when you suppress other arms of immunity when attempting to treat autoimmunity. I still am not clear on how LDN works, whether it suppresses, balances, increases immune function. I do not think it is as simple as the pro LDN sites present it as.
     
  20. Hazeleyes99

    Hazeleyes99

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    You can order the 50mg tablet from online pharmacies and dilute it yourself in water. It is much less expensive than compounding pharmacy. It is also available on a couple research chemical websites in liquid form ready for use.
     

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