LDN Debra49659 are you taking it?

Discussion in 'Fibromyalgia Main Forum' started by hensue, May 3, 2009.

  1. hensue

    hensue New Member

    Maybe I am missing it? I have wondered if you started taking the low dose naltrexone? If you or anyone has please let me know ok?

  2. Debra49659

    Debra49659 New Member

    Not yet...we are weaning me off the Norco. My best guess is it will be June before I start. I have three more weeks to go before I am off the Norco.

    I am anxious to start though....I have really seen some promising results with LDN. I'll keep you posted:)

  3. equanimous

    equanimous New Member

    I've been taking LDN for CFS for the past 6 months or so. If there are any questions I can answer for you, please feel free to ask.

  4. ktp812

    ktp812 New Member

    I was wondering what it is specifically used for? I have no pain to speak of so I am wondering if it is suppose to help with the fatigue?

    I was in treatment for Lyme but am now on Valcyte and doc is thinking about adding LDN. I don't know much about this medication.


  5. equanimous

    equanimous New Member

    Hi Kim,

    I'm in the same boat as you in that fatigue is the debilitating characteristic of my illness, not pain. I don't think that there has been enough research or even anecdotal reporting regarding the use of LDN for CFS to determine whether it is effective in providing relief from fatigue. However, in my own case, I think that it has helped a little bit with fatigue and perhaps even more with brain fog, although it's always hard to factor out various variables.

    As far as how LDN works, LDN increases endorphin production, which in turn helps to normalize the immune system. LDN simultaneously increases certain important elements of the immune system and decreases others. For instance, LDN helps to reduce TH2 cytokines, which is significant in that CFS is often characterized by TH2 dominance. TH2 dominance can contribute to autoimmunity and because I've tested positive for antinuclear antibodies, I was very hopeful about LDN. The most direct evidence that I have that LDN has been efficacious in controlling the autoimmune component of my illness is that shortly after starting the drug, I was able to greatly decrease the amount of corticosteroids I was taking. In fact, I started experiencing side effects characteristic of excessive levels of hydrocortisone, indicating that my body no longer needed the high doses I was taking. Since low levels of cortisol can be associated with fatigue, and given that LDN apparently played a role in increasing these levels however indirectly, it could be said that LDN is probably one of the factors that is helping to control the severity of my fatigue.

    Sorry that was such a long-winded answer. Hopefully you can pull something helpful out of it. The short story is that I would definitely suggest trying LDN. My only caveat is that you should be careful about finding the right dose for you. I can't tolerate anything more than 1.5mg, and seeing as how many PWCs have chemical sensitivity issues, my best guess is that the same would apply to others.

  6. ktp812

    ktp812 New Member

    Hi Liz,

    I am currently on Valcyte so my doctor has mentioned the LDN in case I have no response from this. I am basically willing to try anything that might help. I have been sick for almost 5 years. I only have debilitating fatigue as my symptom now. All the others have been gone for almost 2 years.

    Thank you for explaining how the LDN works. I have never been tested for TH1 or TH2 so I think maybe I should be tested for those. I just recently had all the viral testing done and nothing showed up. I am not sure if it was just too late in my illness for the tests.

    I am on cortef 15mg a day right now and on Levoxyl also.

    I did read a blog on the dosing of LDN and it seems to vary with each person. I do have a problem with certain medications especially anti depressants etc. I can't take much of anything or else I have problems.

    I am seeing the doctor in a few weeks to decide what I am going to do. He thinks my immune system has gone haywire and my body thinks it should still be fighting the infection that originally made me sick. I just don't know anymore...

    I appreciate you taking the time to post.

  7. miraclesivseen

    miraclesivseen New Member

    i am starting 4.5 mg of LDN tonight for crohns
    I am currently n tegretol or seizures, synthroid, 40 mg prednisone just until the LDN starts kicking in then i wean off to endocort
    ANd xanax hat i take at night
    would it be better to take ldn at 10 pm and a xanax at 10:30 it really helps me sleep
    esp during the dreaded prdnisone time

    thanks for any information