LDN - Low Dose Naltrexone

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Oct 26, 2009.

  1. monkeykat

    monkeykat Member


    I've had ME/CFS for over 7 years now and I've never gotten out of the severe stages level 0 to level 30. I also have MCS (multiple chemical sensitivity) which really complicates things as far as taking medication (I react to most meds and some have left me with increased severity and frequency of ME/CFS symptoms as well as causing me to develop MCS and FMS which left me housebound and near the lowest level of health).

    Anyway, my question is whether any of you have tried LDN (low dose naltrexone).

    If so,

    1) Do you have ME/CFS?

    2) Do you have MCS?

    3) Has LDN improved your health and function.

    4) What dose did you start on and what dose are you currently taking?

    Thanks so much,
  2. hensue

    hensue New Member

    My doctor here told me he would not see me if I did because it was not fda approved.
    The Doctor I talked to was in New York and he was very receptive. His name started with a B I am sure people on this board will know.

    This is what he told me as I understood it so do not quote me. I ask him would it help the pain of fibromyalgia he said yes. I said what about the chronic fatigue he did not say yes or no.
    He said LDN has helped fibro more so than chronic fatigue.

    I will get some people on the yahoo board to answer your question better and they may have better results.
    Take care
    I know the dose is extremely low to start out and it my was going to be compounded at skips pharmacy in fl.
    I did not do it though because of my doc
    take care
  3. monkeykat

    monkeykat Member

    Thank you so much for asking others to answer this question. My doctor, Dr. Bowersox, actually recommended it to me a few days ago and I thought I'd ask around first. He recommended that I get it compounded at Skip's Pharmacy as well.
  4. hensue

    hensue New Member

    have you tried the group with yahoo ? the LDN group for fibromyalgia


    I hope this is the link you need a yahoo account to get in they will give you all the info.
    There is ms groups all kind make sure you get in with right one.
    Let me know what you find out

    The doc in New York was Dr Bihari something like that?
  5. hensue

    hensue New Member

    Do you have more energy? less pain or is it to early to tell?

    Glad we heard from you hoping you would chime in.

  6. SnooZQ

    SnooZQ New Member

    I have dxd fibro. I also have moderately severe MCS (self-diagnosed). In addition I have a number of autoimmune disease dxs. I have life-long fatigue, however this is not the same as the CFS pattern.

    I've been on LDN since July/08. Started at 0.5 mg because I am very sensitive to meds. Over a period of months, worked up to 4.0 mg/day, where I have been for the past yr. (occasionally trying doses between 3.0 - 4.5 mg. to find best fit.)

    My pain level, energy and functionality are noticeably improved with LDN (tho' it took about 6 mos. to really get to where I now am). Family members and even acquaintances have commented. I'm back to volunteer work (up to 8 hrs at a time -- moderately active, moving, sorting, shelving hundreds to thousands of books). Also back to my garden for up to 4 hrs. at a clip -- couldn't do much more than 20 min/time before LDN. I can make social plans, which was difficult before LDN. I can shop for extended hours -- before LDN would be at "drop" stage in about 20 min.

    I'm also finding that some of my food intolerance issues are less severe, and I am less reactive to household cleaners, etc. than in past -- able to take over more of these tasks.

    However my situation may not be typical, since I have a fairly strong autoimmune disease componenet, and that's the sort of situation that often responds well to LDN.

    LDN is not the entirely of my arsenal against ailments, but it is the most recent add-on, and I believe responsible for the improvements I've described.

    Happy to answer any other questions. Best wishes.
  7. monkeykat

    monkeykat Member

    Thank you so much for all the replies.

    Thanks so much for all your help. It's good to know what your major issues are and what the LDN seems to be helping. I hope I have good results as well. It's good to know that it's helping some people so much. I have had a lot of autoimmune stuff going on over the years, my illness even had a similar presentation as MS for a while. I'll check out the yahoo group for LDN.

    I know it takes a lot of energy for everyone on here so your help is thoroughly appreciated! I hope you continue to find the answers you are looking for!

    Keep Hope Alive, Monkeykat
  8. monkeykat

    monkeykat Member

    I just joined the LDN Yahoo group so I'm waiting for approval.

    That's good to know about the sleep thing b/c my sleep stinks and I can't take any of the sleep meds that have been prescribed b/c of reactions to them. I take valerian root which helps some but not perfect.

    Good to know that 1.5mg is too much for many people. My doctor works with lots of FMS and CFS patients and he says he's never seen anyone as sensitive to meds, vitamins and many seemingly innocuous things as I am. That's why I want info before I start anything :)

    I have lots of allergies but got some relief from accupressure but it didn't get rid of all my allergies. How much Grapeseed Extract do you take and where do you buy it? It got rid of your allergies?

  9. equanimous

    equanimous New Member

    Hi Monkeykat,

    I've been taking LDN for almost a year now for ME/CFS. I do not have MCS. However, I do have some environmental sensitivities, including, but perhaps not limited to mold and bleach. I also have a lot of food delayed sensitivities (gluten, milk, peanuts, etc.). LDN has definitely helped, but it's hard to say exactly how much given that I've done numerous other things that could have impacted my health over the past year (e.g. amalgam removal). The one direct link I can make between LDN and a change in my symptoms is that after I started the LDN, I was able to greatly decrease the amount of hydrocortisone I was taking. So that probably means that the LDN helped to decrease the overall amount of inflammation going on in my body. I started at 1.5 mg and have remained at that dose. I tried briefly and unsuccessfully to increase to 3.0mg, but I couldn't tolerate the side effects (as I remember, increased fatigue and depression). I've considered trying again, as you really can't know whether the side effects will be lasting until you've given the new dosage a fair trial (say two or three weeks). Often times the side effects will dissipate. I just haven't been willing to go through that extra suffering to find out if it will be worth it in the long run.

    Let me know if you have any other questions.

  10. AuntTammie

    AuntTammie New Member

    I am taking it - have been for about 2 months now

    I have ME/CFS, FM, MCS, low T3, CMP, allergies and asthma, tendinitis, orthostatic intolerance, sciatica, TMJ, and a bunch of very low/ non-existent hormones, and a few other issues

    I am extremely sensitive to almost everything I try to take, esp almost all meds

    I started w/ the full dose (4.5mg) and that was not long after starting Armour thyroid, as well.......not sure what my Dr was thinking (he is normally pretty good, but that was insane!)....didn't know that the Armour might need to be reduced when starting LDN & didn't know that the dose should have been much lower.....heart was pounding, I kept passing out, was shaking like crazy and just generally feeling really horrible.....oddly, the first week I slept really well....since then I have not been sleeping much at all

    Once I found out some of the issues, I stopped taking Armour (had only been on it a little while & was on a very low does anyway and was having somewhat of a bad time with it)....I also opened the LDN capsule and divided it into 4.....took that for awhile and found it was still too much...went down to 1/8 of a capsule (.5 mg) for a couple of weeks, then back up to 1/4 capsule (1.125mg)

    Have since switched to taking it when I wake up and still only taking 1.125 mg.......seems to be ok at that amt, but still not sleeping as well as I was before, and not sure how much good it is doing.....hoping to eventually increase it a bit bc I did notice that at the higher dose I had more energy and a lot less pain.....even at this dose it does seem to help some with pain and I think it is working better than the Armour was for me....but it is very subtle, so it is hard to explain exactly what's going on

    I think that if I can eventually go to a higher dose, it will be good, but not if it keep screwing up my sleep......if I have to stay at this dose I am not sure if I will stay on it, though.....I figured that I will at least give it through the winter, so I can get a fair trial of it
    [This Message was Edited on 10/27/2009]
    [This Message was Edited on 10/27/2009]
    [This Message was Edited on 10/27/2009]