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starting LDN. Does it work?

Discussion in 'General ME/CFS Discussion' started by Ambrosia_angel, Mar 2, 2014.

  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Haven't been on the forums in a while but I'm back :)

    I'm thinking of stating LDN very soon. I'm going to the gp next week with an info paper about it and ask if he can do a prescription out of his budget. If not then I will ask him to write a permission form saying that I'm okay to have the prescription. Then I will contact a consultation company (e-med. Any opinions on them? Other websites don't seem to have as much info but their website seems a little... backwards? E-med.co.uk)

    Has anyone had any success with it? Most of the testimonials seem to be for MS and not ME. Also what sort of side affects are involved for cfs patients. I don't have drug sensitivities luckily but I do want to know if anyone had side affects.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are several threads on LDN and the effects, side-effects, and non-effects that ME patients have had. But the search engine at the top doesn't handle 3 letter searches, so click on forums at the top, scroll down to resources and click on google site search. Here you should find plenty of comments.

    Just off-hand, it seems to help about 50% of patients, but you need to start with a very low dose (.5 mg for some) and take a long time (months) to work up to a full 4 mg dose.

    I am one of the ones it has helped.

    Best,
    Sushi
  3. minkeygirl

    minkeygirl Senior Member

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    I started in .25 Mgs a few weeks ago. I started at .5 Mgs and had a horrible headache but that went away at the lower dose.

    I immediately felt better. But it completely screwed up my sleep so I stopped it. That is a known side effect, one of the only one I'm aware of.

    I am going to try again in the morning as soon as I get my Famvir on board.

    I have a friend who swears by it. If you can get it try it. Start at a low dose and work up.
  4. Ambrosia_angel

    Ambrosia_angel Senior Member

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    @minkeygirl down I need to buy special measuring apparatus for it? Those doses a very low and the most I have is a 2.5ml medicine spoon.

    @Sushi thank you. :)
  5. minkeygirl

    minkeygirl Senior Member

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    @Ambrosia_angel I had mine compounded so it was easier for me. One thing you might want to try is using water. Here is the basics of how it works.

    Take 100 ml water in cup. Add 100 mgs of naltrexone. Stir and then use a syringe to draw 1cc for 1 mg. Make sense? Less mixture for a smaller dose. It probably tastes like crap but you can wash it down with something else. (I was able to get 60 ml syringes from a veterinarian or on ebay. You can get much smaller ones online also.) Or take 25 ml water and 25 mgs of naltrexone.

    There are some threads here on how to do that and how to store the rest of the liquid, which I think was in a sealed container in the refrigerator.

    I planned on started with .5 mgs but because I had such a bad headache I split the capsules. So maybe try that to start.

    You can PM me if you need better instructions on how to do that water method.

    Also, if you cant get a doc to get it for you there are places you can get it for pretty cheap without an RX.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Ambrosia_angel

    What form of LDN do you have or hope to get? Sometimes it comes in liquid and sometimes as a tablet or capsule. In each case you have to look at the dilution and measure out your dose--unless you have capsules that are the exact dose you need.

    I measure my liquid LDN with an insulin syringe with the needle removed.

    Sushi
  7. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I understand. I have to dilute it by 1:1 then take out (e.g.) 1ml which will be 0.5ml of naltrexone. Maybe I'll get a pipette too.
    I'm reading people's stories on here and a lot seem to have negative experiences with it. It's making me feeling a bit weary of it now :/ feeling a bit deflated before I've tried.

    Also does the increased endorphins have an anti depressant effect to it? I'd like to avoid that tbh. I don't want anything messing with my current thought process. Especially if I have to come of it suddenly.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My guess is that most of the negative reactions are from starting with too high a dose. Though it is true that it is very common to get insomnia at first--for me for a few days every time I raised the dose. But when I got to 3 mgs my sleep became much better and has stayed that way.

    I take it at bedtime so the increased endorphins happen during sleep--I don't notice a thing from that.

    Sushi

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