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Seeking LDN input

Discussion in 'General ME/CFS Discussion' started by confetti11, Nov 5, 2018.

  1. confetti11

    confetti11 Senior Member

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    Hello. I've been feeling indiscriminately worse at times (other times same), and I was associating it with other treatments or just a worsening of symptoms. Then I remembered that I just bumped up LDN again last week.

    I started end of September with a drop, then 2.25, then 3.75, then the full 4.5. I do have trouble getting to (and sometimes staying) asleep, daytime sleepiness (sometimes), feeling general yuck/malaise nearly all the time to some degree, some nausea and appetite issues. And yesterday a monster headache. I'm starting to wonder if this may be due to the LDN increase, or from starting it in general since some of this has been going on for a while.

    Does anyone more educated about this drug than myself have any suggestions for a game plan? I'm thinking about taking it back down to a very slight amount and possibly building up more gradually from there. To see if I can't alleviate some of these symptoms. Or at least maybe know where they are coming from.

    Thanks!
     
  2. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    I my Gosh!!! That is a brutal dose! It took me 2 years to be able to do 4.5mg.
    I would get sleepy and inflamed brain very bad. But I ma glad I kept on it ( tx sushi!)
    You are supposed to start at .25 every other day. Not increase by every 2 weeks, some plp can start at 1.5mg. Then up when symptoms are stable. Like I said it took me 2 years to work the fulll dose!! Best of luck.
     
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  3. Mary

    Mary Moderator

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    @lnester7 - what benefit do you get from ldn? I tried it a couple of times (very low dose) and it made me spacey and tired and it was hard for me to function. e.g., it was raining very hard and my roof was leaking so I put out buckets in my living room and it took me 3 days to realize that perhaps I should do something about it besides putting out buckets - that's when I stopped the ldn (the last time).
     
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  4. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    @Mary To be honest at first I didn’t see any benefit. LDN is used by my doctor to help pain, energy levels and raise NKs
    Since it took me 2 years to go full dose, I didn’t see much benefit while at very low dose, but after a while I noticed the energy increase spacially at 9mg ( doctor put me on 9 instead of 4.5) so benefits=
    Energy increase by 3 point on a scale of 1 to 10, when I am off my base line dicrrases tremendously.
    2) my NKs raised a little when I have not being able to raise at all ( I realized my issue was fish oil ) and I have not been tested since I quit to see if the NKs are finally coming up more).
    3) my overall inmune system is not so all over the place, I would drink a tea and get hyper state, foods... I over reacted to everything and this got it better.
    4) pain did nothing I think was the l glutamine that finally took care of the pain to be honest.
     
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  5. Mary

    Mary Moderator

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  6. perchance dreamer

    perchance dreamer Senior Member

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    I have never taken the oral form. I use a transdermal prescribed by my doctor. I rotate sites such as my inner thighs and under my upper arms since transdermal LDN absorbs better in the fattier areas. I have built up to 3 MG.

    I've never had a problem with LDN except when I tried taking it in the morning at first. It zonked me out, so I apply it before bed.

    LDN has helped me some with sleep. I haven't noticed much of anything else, but my doctor is a big believer in this medicine.
     
  7. Wishful

    Wishful Senior Member

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    LDN worked great for me for reducing perceived muscle aches. It didn't have any other noticeable effects. I started at 4.5 mg, and found that I needed a minimum of (I forget now, but maybe 3.25 mg). Even a tiny bit less than that and it was ineffective. Exceeding (maybe 6.0 mg?) made it stop working again. Taking it sublingually reduced the amount needed by around 30%, so 2.25 mg was enough. I also discovered that its benefits lasted somewhere around 40 hrs, so I alternated morning and evening every second day, which allowed me to be ache-free continually.

    I don't know what is going on with people taking much lower or higher doses. As I understand it, LDN has a fairly narrow range of concentration where it triggers endorphin release, and the effect disappears outside of that range. That certainly matches my observations.

    Maybe for ME its another one of those things that has a very individualistic effect, so you'll have to experiment to see what dosage works for you (if it works at all, and if it continues to work). My aches mostly subsided after a year or two of LDN, so I don't take it anymore.
     
  8. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    Wow that is awesome! I want more transdermal stuff, would you mind telling me where you can find transdermal LDN?
    I take it at morning, it keeps me awake long term
     
  9. perchance dreamer

    perchance dreamer Senior Member

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    @lnester7, I live in Austin, TX, and my doctor sends my prescription to a local compounding pharmacy. A prescription is required. My pharmacy name is Lake Hills Pharmacy. I started off with 1 MG of the transdermal. Good luck!
     

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