Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

LDN, what is it for?

Discussion in 'General Treatment' started by Ocean, Jan 31, 2012.

  1. Ocean

    Ocean Senior Member

    Messages:
    1,169
    Likes:
    267
    U.S.
    I see there's a poll on LDN here but what exactly do people take it for? Is it for flulike type symptoms, for pain, for sleep, for fatigue, for PEM, or a combination of those or something else? I can't quite grasp what it is, what it does, and what it's supposed to do.

    Since our symptoms vary so much among us, is there a certain patient profile that is best suited for trying LDN? Are there contraindications, certain meds you shouldn't take with it and such?

    ETA: Also, anything to be aware before trying it? I don't know if my doctor knows anything about it or not but I plan to ask him about it. Anything that would be useful to tell him would be much appreciated also. Thank you.
     
  2. health_seeker

    health_seeker

    Messages:
    42
    Likes:
    38
    US Pacific North West


    Hi Ocean:

    I'm hoping this message will post as I'm experimenting with Firefox to see if it will work any better with this website for me.

    LDN stands for low dose Naltrexen. At higher doses between 50 and 100 mg, Naltrexen. Naltrexen is used to to treat dependence on opiates. Butat very low doses (between 3 and 10 mg) it seems to have a beneficial and regulating effect on the immune system. Some people with CFS find it helps them. I don't have any experience with it so can't comment on how effective it is.
     
  3. Ocean

    Ocean Senior Member

    Messages:
    1,169
    Likes:
    267
    U.S.
    Thanks Healthseeker. I did know all that but I didn't make it clear enough in my original comment. What I'm trying to find out is what specific symptoms it's meant to help with in CFS and what specific aspects of the illness it's helped people with. I should have worded my question a bit more clearly.
     
  4. *GG*

    *GG* Senior Member

    Messages:
    6,138
    Likes:
    4,734
    Concord, NH
    A) I used to have more frequent flu like symptoms, have subsided substantially, been on it for 2.5 years now. (Have also been doing hight doses of Vitamin D for the same amount of time, another immune modulator.) Some people find it helps others that it hurts their sleep, but that is usually transient. Some say they have more energy. My PEM is much better than in the past, I usually don't mention this, because most people seem worse off than me, but I got back on my bike this year, and did not suffer any crashes. I had the 2 day exercise test done about 1.5 years ago now. I was found to have PEM, but my lawyer did not think it was enough to quit working. I think it 's still a relatively new area of science (CFS).

    B) Cannot do opiates.

    C) Low Dose Naltrexone is prescribed off label, so I don't think it is prescribed for a specific symptom.

    things to be aware of: People who are sensitive to meds have issues with it, and usually stop takin it (my impression)? Tell him is prescribed at ten times the dose to alcoholics, so liver issues should be ok. If he doesn't presribe it, you will get if from another Dr and/or get it online, so safety less certain. But the doc is not leaving you much choice.

    GG

    PS LDN is also big in the Fibro community!!
     
  5. Ocean

    Ocean Senior Member

    Messages:
    1,169
    Likes:
    267
    U.S.
    I am very sensitive to meds so I wonder if I'd be one of the ones to react badly. I seem to to everything else. But it sounds like you got good results. I'd love to help less flu lke symptoms and especially less PEM. It's wonderful that you are seeing those improvements. Is it true you can never take opiates if you're on it. I thought I read that you can as long as it's not at the exact same time, like a few hours apart.

    As far as the exercise testing, did you only do that for disability purposes or is there some therapuetic value in doing it also? Maybe I will PM if you don't see this response. Thank GG.
     
  6. penny

    penny Senior Member

    Messages:
    288
    Likes:
    142
    Southern California
    It's hard for me to sort out what specific supplements or meds do what, but here's what I think LDN has helped me with:

    - Pain - The best way I can describe it is that it turned down the 'volume' level of my pain. It wasn't like one specific type of pain resolved, but more that EVERYTHING hurt less.
    - Sleep - Ignoring temporary sleep disturbance from starting on the LDN or changing dosage, it has helped me sleep a little better. This may or may not be solely due to reducing my pain (which disrupted my sleep).
    - OI - I believe it improved my OI slightly - nothing dramatic, but noticeable.
    - PEM - This one is really hard to measure, but after starting LDN I just didn't crash as often as I had been. There were several times where I did too much, knew I did too much and was prepared for a crash, and it just didn't happen.

    Most of the above were noticeable pretty soon after starting the LDN and were pretty clearly attributable to it. I've also had improvements in energy and cognitive functioning in the last ~3months as well as less of the flu-like feeling (low grade fever, general aches) and sensory hypersensitivity. I don't know whether these improvements are partly or largely due to LDN.

    I do feel like the LDN is helping with my immune system and is helping me heal. Though I have no evidence of its effect on my immune system, that's just based on my gut and how it's 'supposed' to work.

    [I've been taking it for 8 months, and take .5mg a night.]
     
  7. Ocean

    Ocean Senior Member

    Messages:
    1,169
    Likes:
    267
    U.S.
    Thanks for the input Penny, it's really useful. I will definitely be bringing it up to my doctor on my next visit. Glad to hear you're doing well on it too.
     
  8. *GG*

    *GG* Senior Member

    Messages:
    6,138
    Likes:
    4,734
    Concord, NH
    I believe you can take Tramadol, not sure of anything else. Just check with a pharmacist. I have pain but rarely do pain killers, I just stop and relaz or massage myself.

    I was hoping the disability testing would show that I could quit working and go out on disability. I don't think there is a "therapueutic" value, but it could help someone get a better handle on exercise/pacing, which I guess it kind of did. I bought a heart rate monitor, but it was not functional enough to use, so I would realize that I was overdoing it, alarm(s) are not "shocking" enough.

    I have good insurance at work, so that was another reason to keep working. My Dr doesn't take Medicare, and I could not rely on family if I had to transition, at least I don't want to find out unless I really have to! Feel free to PM anytime.

    GG
     
  9. Ocean

    Ocean Senior Member

    Messages:
    1,169
    Likes:
    267
    U.S.
    Thanks GG. Do you plan to get another heart rate monitor that works better? With this illness is it that our heart rates go higher than the average person or just that when they go above a certain limit that wouldn't bother others it can cause PEM in us? I' interested in a heart rate monitor possibly in the future.
     
  10. *GG*

    *GG* Senior Member

    Messages:
    6,138
    Likes:
    4,734
    Concord, NH
    No, I don't at this time. I don't think they make anything that would be suitable for my needs. I would want something that really vibrates, so it would get my attention when I am exercising. I get in a zone, unless of course I am really struggling.

    Not sure I know the answer to your question. There is a thread on here about heart rate monitors, exercise etc..If I recall correctly, my highest heart rate was determined to be 129 BPM and then I would start going anearobic. I thought like a 10% reduction would be a good buffer. But I emailed the person who did my study and she said I should try not to go over around 110! That's nearly impossible when you exercise and do practically anything for that matter!

    GG
     
  11. Ocean

    Ocean Senior Member

    Messages:
    1,169
    Likes:
    267
    U.S.
    Thanks GG. I will look up the thread and look into it more so I can ask my doctor about it. I wonder if I have to do the exercise testing in order to be able to properly make use of the heart rate monitor. The testing in that CA lab is really expensive, but maybe a cardiologist can do something similar that would be much cheaper and covered by insurance. I have lots of research to do on so many topics still. This illness is exhausting in more ways than one;)
     
  12. *GG*

    *GG* Senior Member

    Messages:
    6,138
    Likes:
    4,734
    Concord, NH
    Yes, it it. I believe the lab in CA is about 2K. In NY it is 1500, but you need to visit Drs before they will test you. they want to make sure your heart can take it!

    GG
     
  13. Carola

    Carola

    Messages:
    39
    Likes:
    15
    I was recently prescribed LDN for sleep, specifically to help induce stage 3 sleep. The initial dose was to be 1.5 mg, and over a couple of months I was to work up to 4.5 mg. Since I have a history of being sensitive to drugs, I wanted to be cautious, so started at 0.3 mg, and after 3 weeks have worked up to 0.75 mg. After a few nights of disrupted sleep (waking up, bizarre dreams), I definitely am sleeping better. And in the mornings I no longer have that "death warmed over" feeling - which I believe has to do with LDN's effect on endorphin release.

    If you go ahead with it, I would ask for a liquid formulation so that you can start low and go slow, to see how you tolerate it. Good luck!
     

See more popular forum discussions.

Share This Page