The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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depressed about LDN

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Oct 6, 2015.

  1. littlebird6180

    littlebird6180 Senior Member

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    MAJOR UPDATE: see last post

    I've been on LDN since July. And am currently up to 5ml. I can't say I've noticed any effect whatsoever. My CFS/ME doc is convinced it's because my immune function is so poor and until I get my immune function improved through K-PAX and a variety of other supplements, it may not work for me. She also wants me to continue to increase the dose because they've had many patients respond at higher doses than the usual 4.5.

    I'm trying not to but I keep reading so many amazing stories on here of how LDN changed people's lives and it's hard to not feel discouraged and upset that it doesn't seem to be working for me. Dr Klimas seems to think it's going to end up being the standard treatment for CFS/ME too so what do I do if it doesn't work for me?
     
    Last edited: Oct 6, 2015
  2. Mary

    Mary Senior Member

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    @littlebird6180 - ldn didn't work for me. I've tried it twice, the last time a couple of weeks ago. I responded horribly to it, even in very small doses. I started at 1.5 mg., and kept decreasing it because it made me very tired and achy, and then spacey and depressed. Finally had to stop it after 9 days as I couldn't function.

    So it's not for everyone, unfortunately! My sister who has rheumatoid arthritis tried it (I forget how long), she was taking 4.5 mg. and noticed nothing, good or bad, sounded sort of like you, so she eventually stopped it.

    I don't know if your doctor's theory is right, that poor immune function is interfering with the efficacy of ldn. I think the whole point of ldn is to improve immune function.

    Two years ago my HHV6 number was quite high (in the 600's), but my GP who did the test did nothing and I didn't know enough to do anything about it. I recently was re-tested by Dr. Kaufman at OMI and my number had come down quite a bit to the 100's - this without an antiviral. Dr. Kaufman said that if he had been treating me 2 years ago he would have put me on an antiviral but that I don't need it now. So - somehow my immune system improved over the last 2 years and the only things I can figure that may have contributed to this are Inosine and glutamine. I started inosine I think a little over a year ago, and the glutamine last November. There's lots of info available about glutamine and the immune system: https://umm.edu/health/medical/altmed/supplement/glutamine

    I tried K-PAX several years ago and it didn't do much for me, but I think I was already on a good basic nutritional regimen.

    I would ask others here what they have done to improve their immune systems. Good luck!
     
    ahmo likes this.
  3. littlebird6180

    littlebird6180 Senior Member

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    Thank you! The LDN made me really tired at first too. I had a hard time and felt like a total robot. But that effect suddenly stopped and now I just can't seem to feel anything.

    I may have misinterpreted my doctor. She works with Dr Klimas at Nova so I'm going to assume I got this wrong (so much information comes at me in a single appointment that I am bringing my husband next time just to help me remember and translate). Maybe what she meant is my immune function was so poor that it would take longer for it to work?

    I feel a bit better with K-PAX but it's doing a number on my stomach.

    I believe that glutamine is on my lengthy list to bring to my doctor but if not, I will add it! Every time I feel like I understand a part of this, a whole other layer is revealed and I feel as clueless as I did the first day.
     
  4. Helen

    Helen Senior Member

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    My doctor, wellknown, experienced and knowledgable, wanted me to try LDN but told that all people with ME don´t benefit from it of genetic reasons. He also told that there is no reason to go higher than 4.5 mg daily. For what it´s worth.
     
  5. Vojta

    Vojta Senior Member

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    Ldn didn't work for me too. It makes me very irritated, depressed and causes anhedonia. I tried twice but I had to stop always after few days. My doctor also told me there are people who don't respond because of their genes. It could be true because other opiod analogs (tramadol) makes me sick too. It very unfortunate it doesnt work for us. My LLMD says it helped many of his patients.
     
  6. Mary

    Mary Senior Member

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    This makes me wonder if it's right for you - what is it doing to your endorphins such that you can't feel anything - I don't think that's a good thing. We don't have the research showing that ldn is right for everyone.

    K-Pax is just a high dose vitamin/mineral supplement with a few other things thrown in, maybe you would tolerate another supplement better. e.g., this one looks good, has almost everything K-Pax does except N-acetyl-cysteine, acetyl-l-carnitine and l-glutamic acid (and l-glutamic acid is not for everyone).
    http://www.iherb.com/Life-Extension-Two-Per-Day-Capsules-120-Capsules/62210

    The Life Extension product also has a low dose of Niagen, which may be beneficial for energy.

    I'm not telling you to switch, but just that there are alternatives to K-Pax if it screws up your stomach.

    I totally get it about feeling clueless. This illness is complex. Just when I feel like I'm getting a handle on things, I learn something totally new - it can be overwhelming! :confused:
     
  7. ahmo

    ahmo Senior Member

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    That's a very good point. I've been very fortunate to have had LDN make a difference, at 4 mg.

    There's been an ongoing conversation on one of the yahoo LDN forums re dosage. Some comments. The quotes come from very knowledgable people, at times reflect differing opinions re dosage. Some of it concerns cancer, I thought it was pretty interesting.

     
    CantThink likes this.
  8. littlebird6180

    littlebird6180 Senior Member

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    I don't even know where to begin in my response. There is so much incredible information in this post. Thank you so much for taking the time to post this.
     
    ahmo likes this.
  9. Mary

    Mary Senior Member

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    After I stopped ldn, it took close to a week to get my energy back. The ldn appeared to deplete my adrenals somehow, which I think was the cause of the severe fatigue I had while on it - muscle testing indicated that my adrenals were weak after I stopped, and after several days of taking Drenamin (adrenal glandular) my energy started to return. I don't know how ldn would affect the adrenals, but it appeared to do so in my case.
     
  10. littlebird6180

    littlebird6180 Senior Member

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    MAJOR UPDATE:
    I just spoke to Skip's pharmacist and he pointed out that my liquid naltrexone is only 0.1mg/ML which means I'm only taking half a MG. he said do NOT give up, that I need to get a prescription that is 10 times the strength. He gave me so much hope and was so informative. So I just wanted to share that!
     
    ahmo likes this.
  11. ahmo

    ahmo Senior Member

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    @littlebird6180 I switched from compounded LDN to purchasing 50mg Naltrexone. Far cheaper. Excellent quality, Indian pharmacy, super quick delivery. There's a space in the online form to add rx details, but it can be left blank.

    Dilute 50mg tab w/ 50ml distilled water. This gives you 1mg:1ml, very easy to work with. alldaychemist.com
     
    Rooney likes this.
  12. panckage

    panckage Senior Member

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    It seems like the majority of the posts about ldn are negative here. I just want to say although I've only been on it for a couple weeks and still titrating up my dosage, the results have been very positive.

    I have my emotions back. My OI seems to be largely gone. I have gone from doing the minimum to survive until the next day to not having enough in a day to do everything I want to do. It's been a life changer for me

    Again though I've only been on it a couple weeks and meds have a habit of losing their effects within a couple months on me but fingers crossed!

    A nice side effect is that opiods seem to work much better now that I'm on LDN
     
    CantThink and daisybell like this.
  13. ahmo

    ahmo Senior Member

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    Here's another interchange re dosing schedules:
     
  14. Sidereal

    Sidereal Senior Member

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    Very interesting information, @ahmo, thanks for posting all that. My experience mirrored the person quoted above. Initially I took LDN daily, starting with 0.5 mg and gradually building up to 1 and eventually 2 mg. I had good results from it for several weeks. The only side effect was insomnia but it was manageable if LDN was taken in the morning. After a couple of months, though, LDN started making me sick and at first I was able to get around that by pulsing it - one dose every second or third day - but eventually even that became too much and now every time I take it, even a really small dose like opening a 1 mg capsule and taking just a few grains from it, I feel very subpar and derive no benefit from it whatsoever.

    I am not sure why an ME/CFS doctor would say that this is going to become the standard treatment for this disease. ME is not MS where some people get truly astounding results from LDN. This treatment has marginal efficacy at best for ME and FM. Dr Younger's published trial data in FM is incredibly unimpressive. Thousands of people have been trying this over the years and for most who benefit the improvements seem quite modest in the sense that they tend to still be disabled while feeling a bit better. Some get no results from it. Some feel worse on it. This is just going by anecdotal evidence online.
     
  15. littlebird6180

    littlebird6180 Senior Member

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    I'm not trying to be negative. I think LDN seems like an amazing drug and I feel re-motivated right now after realizing I was taking a fraction of the dose I thought I was. My doctor just called in the 1mg/ML concentrate (I currently have the .1mg/ML) and I'm going to start slowly and increase about 1mg a week.
     
  16. Rooney

    Rooney Senior Member

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    As I heard Dr. Klimas say recently, they are having some good results with LDN in ME/CFS, I am trying to get the drug. It is am immune modulator that would need time to work. It gave me a headache years ago, but the dose was too high, I'm sure.

    Looks like I'll be contacting alldaychemist.com!

    My fibro friend really likes LDN it so much and suggests it. She did take a break then went back on and was improved again.

    Thanks for all this great info, everyone.
     
    ahmo likes this.
  17. littlebird6180

    littlebird6180 Senior Member

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    I hope you're able to get it and that you have great results!
     
  18. digital dog

    digital dog Senior Member

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    I took 0.1mg Monday night and I have had a dreadful three days.
    It made me extremely edgy, sick, and gave me chronic insomnia. I went downhill FAST!
    I cannot even tolerate 0.1mg so I don't see the point of even trying to take this drug.
    I am EXTREMELY disappointed.
    I can handle most physical side effects but when something makes me anxious or depressed and want to kill myself I have to stop.
    Also I cannot take glutamine. I think a few of us here find glutamine problematic.
    Actually I can't take anything really so I am stuck with being ill.
    I honestly don't know why i bother.
    If anyone wants three months of liquid LDN minus 0.1mg then contact me.
     
    Misfit Toy likes this.
  19. digital dog

    digital dog Senior Member

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    Oh and I seem to have developed tinnitus which I've never had before.
     
  20. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    @digital dog I'm so sorry to hear you've had a bad reaction to LDN. I've found your recent posts and questions on the subject very helful in helping me make up my mind about LDN.
    I decided to give it a go and I'm currently waiting for an appointment with a LDN Dr.

    I really hope the awful side effects you got from it go away soon.

    This illness is a reall bar****d
     

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