Question for those taking Low Dose Naltrexone?

Discussion in 'Fibromyalgia Main Forum' started by Scapper, Sep 27, 2006.

  1. Scapper

    Scapper New Member

    I have a doctor's appointment set up and I'm going to ask him to prescribe LDN.

    I've read on the board here and on the internet how this helps to boost the immune systems of those with auto-immune diseases, as well as a host of other illnesses.

    They make it sound very promising.

    I was wondering if those of you who are currently taking this, or those of you who have tried this, could tell me a little of your experience.

    I've had CFIDS for 12 years and I'm constantly in a viral state with severe exhaustion. Any relief would be welcome at this point.

    I'm wondering if LDN helps w/ fatigue in CFIDS or any results you've found? Anyone care to share??

  2. tlayne

    tlayne Member

    I have been taking LDN for about 6 months (I think). I noticed within weeks that my hands and lower legs were no longer bluish and numb. I really didn't think that it did much more until I quit taking it, and then the brain fog, pain, and fatigue hit me full force. I really did not think that I could get anymore exhausted, but I did.

    I haven't found this to be a miracle drug, but it does help. I will not go off of it again. It is the only thing that I take for pain. I do still have pain, but it is much worse when I went off of LDN.

    If you do get LDN you will need to find a good compound Pharmacy. If they do not compound it right you will not see any benefits. I get mine thru New York. With S&H the cost is only $38 per month. The first couple of nights you will have a hard time sleeping, and then you will sleep better. Hugs, Tam
  3. Scapper

    Scapper New Member

    Tam: Thanks for sharing your experience with this. (BTW, that picture in your bio is AMAZING!!!!)

    I know EXACTLY what you're saying with not feeling as if things could get worse......and then they do......I'm then left wishing for my "old sick" back.

    I'll see what my doctor has to say about this suggestion.

    Anyone else have experience w/ this?

  4. cherylsue

    cherylsue Member

    My physician friend reommended LDN Naltrexone because it helped a friend of hers. I asked my doctor about it when I saw him Monday. He said it came out about 5 years ago. There were anecdotal reports on it helping some people, but he said results were not statistically significant, so did not recommend it.

    I emailed Dr. Teitelbaum, and the reply was that he used to use it but did not find it helpful. Dr. Enlander in New York uses it with limited success.

    So, it may help some, but do not consider it the magic bullet. Even the website for LDN naltrexone says that unless you get to the infection, it has limited success.

    It is cheap, however, and you can have it mailed from a compounding pharmacy. Check the website.

    I checked the back messages on this board, and reviews are mixed. It helped some with pain, but not the fatigue. One said it made her worse, and she stayed that way.

    I also read it can make those with bacterial infections worse.

    You have to decide what kind of infection that is causing your CFS. That's a good place to start before you experiment with treatments.

    Good luck.

    P.S. Drs. Petersen, Bateman, and Lapp are recruiting CFS patients for Ampligen. Chick under the tab on top for Clinical trials for more info. Ampligen has a very good success rate for CFS.
    [This Message was Edited on 09/28/2006]
  5. Scapper

    Scapper New Member

    Thanks for your input CherylSue:

    I too read results from the board and multiple websites. It sounds promising to me.

    I didn't see anything indicating that it was bad for bacteria. From what I could see, it seemed to boost the immune system, regardless of what your underlying issues are. It's not a drug that targets viruses or bacteria, it boosts ones immune system (NK count, T-cell, etc.) so your body can defend itself from foreign invaders.

    I continue to work on underlying viruses, however my immune system seems to stay depleted......allowing viruses to reactivate over and over. This is why I was pursuing LDN.

    I saw my doctor today, however, he was not "certified" in prescribing this. He said most pain specialists, which he was not, were licensed to do so.

    Looks like this is going to have to wait a while.....I'm disappointed.

    Oh well, I did see the information on Ampligen.....thanks.


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