arrow47 Comments
  1. Rich Perillo
    Aug 28 - 6:30 pm

    Naltrexone is available without a prescription from All day Chemists, an India source that is reported to be reliable and safe. (I would pay with money order) considering the distance.
    Available in 50mg tablets that one dissolves in 10 ounces of water, for example, and then use the appropriate amount per day, for a low dose. They don’t list it as LDN!

    • MK Gilbert
      Sep 09 - 9:29 am

      How much does it cost? ~and are there side-effects we should be aware of? I’m one of those super-sensitive people who over-reacts to so many things…

    • kauri
      Sep 19 - 10:39 am

      Thanks Rich for the tip on AllDayChemists. I ordered from them , used Paypal, have received the med. promptly (they used Express mail) and am about to follow your instructions on dissolving and dividing the doses.
      I’m particularly excited because I not only have ME/CFS but also have metasicized bowel cancer, and because of my advanced ME can’t undergo chemo. So encouraging to have something to try. The LDN website is inspiring.

    • kauri
      Oct 26 - 11:01 am

      I followed Rich’s tips and ordered Naltrexone from AllDayChemists. Everything went smoothly and easily. I paid as usual with my credit card, no problems. There were two brands to choose from and I chose at random.
      I dissolved 1 50mg pill in 300 mls water, so each 1mg = 6mls. It dissolved quickly and easily.I keep it in the fridge and use a syringe for dosing.
      I am now in process of slowly increasing the dose. I got an immediate noticeable improvement in depth of sleep from the first night, taking only one half mg. I’m now up to one and a half mg with excellent results.I plan to continue increasing slowly to at least 4.5mg. At first the NTX tasted quite bitter, but I’ve come to like it..it tastes like tonic water.
      Thanks so much Rich.

    • Sue
      Jan 06 - 12:33 pm

      What do they list the Naltrexone as?

      Thank you.

  2. ABE
    Aug 28 - 9:03 pm

    I currently keep pain in pretty good control with 200 mg. of Celebrex 2 x daily, and have been doing it for many years, with no increase in dose.

    I have CFS.

    The B1 in megadoses I’m taking is helping with the fatigue and brain fog – I estimate a 20% improvement.

    Is there any information on using LDN instead of Celebrex?

    The symptoms I most want improved are the brain fog and the fatigue – Celebrex helps neither.

    I wonder if LDN would reduce brain fog and fatigue? I will be following this information to see if it is worth trying for that.

    Thanks for the information.

    • ido
      Aug 30 - 11:55 pm

      yes it can help with fatigue

      • Gina
        Sep 01 - 3:42 pm

        I feel so much clearer taking the LDN my fog is minimal to non existent. This medication although inexpensive is LIKE GOLD to me I am so thankful to be getting back on track and hopefully my life back. Suffering from FM/CFS for about 17 years now and years of try this or this then piling narcotics pills patches shots with minimal relief…. One simple inexpensive pill seems to alleviate 90% of my symptoms and this is day 8 I’m getting stronger and enjoying my days knowing that the pain is manageable now.

        • Cort Johnson
          Sep 01 - 6:24 pm

          That’s so great Gina. Congratulations! How nice that something inexpensive and readily available works :). Continued good luck on LDN.

  3. Sara Williams
    Aug 29 - 4:28 am

    I found LDN in a Charlotte NC CFS newsletter five years ago. It was just a little blurb, but it resonated with me. My Integrative MD had no problem prescribing because, “it’s low dose, can’t hurt”. I had the usual one or two weeks balancing the sleep issues. What it did for me was lift a heavy full body fatigue. After reading on the http://www.losedosenaltrexone.org web site as to all the various health issues raving about the medication I am convinced I will never stop taking it. Skips Pharmacy is a good one for ordering in the states…..he’s a pro on the LDN subject.

    • EA
      Nov 12 - 9:24 pm

      Hi, I’m from Charlotte, NC and have been diagnosed with Lupus & Fibromyalgia. Having read a great deal about the effectiveness of LDN in treating these disorders, I’m very anxious to try it, and am searching for a local MD who will prescribe It for me. You mentioned in your post that you read about LDN in a Charlotte CFS newsletter, so I’m hoping your Integrative Medicine Practitioner is also from Charlotte. If so, I would really appreciate having his/her contact info. My rheumatologist is very traditional, and scoffed at my request for an LDN prescription.
      Thanks!

      • Cort Johnson
        Nov 13 - 10:48 am

        If you go to the LDN website they may have a list of practitioners, but have you seen Dr. Lapp? I think he’s in Charlotte or close by and he’s been treating FM for decades…He’s at the Hunter Hopkins Center…

  4. Debbie
    Aug 29 - 5:02 am

    I wanted to try LDN, and I haven’t given up, however even with all of the lterature that I had printed (thanks to three ladies that had given me), all three of my Doctors (Rheumatologist, Neurologist and PCP) had never heard of it and were not really interested in reading or discussing it.

    I’m not giving up, I’m also looking into other things but gotta keep on going.

    • Cort Johnson
      Aug 29 - 8:28 am

      Good luck Debbie…

  5. Gijs
    Aug 29 - 7:30 am

    I do not understand why this drug works in ME / CFS. Naltrexone is a substance that blocks the reward center in the brains . For this reason it is used on alcohol addiction. Scientific research shows that the reward system in the brain by ME / CFS is not working properly. This is contradictory. http://www.sciencedaily.com/releases/2012/04/120424142109.htm

    • Cort Johnson
      Aug 29 - 9:06 am

      Thanks for the link. I’d forgotten about that study…My understanding jives with what Iquitos said. LDN tricks the brain into producing more endogenous opioids. That’s good to hear that it can work at any time of the day.

      • Gijs
        Aug 29 - 9:42 am

        Hi Cort, Naltrexone simply blocks the normal reaction of the part of the brain that produces the feeling of pleasure when opioids are taken. It does not make sense with the study i mentioned.

        • Cort Johnson
          Aug 29 - 9:47 am

          I realize that. I was simply glad to be reminded of that study.

        • kauri
          Oct 26 - 11:14 am

          It is far too simplistic to say that NTX only blocks pleasure chemicals. Not only endorphins are blocked temporarily, but enkephalins too. And the benefit arises not from what the NTX does, but how the body responds to the deprivation. When the system responds to the blockade by increasing production, an increase in various regulatory immune functions is triggered. Some of these include anti-inflammatory and anti-proliferative actions. This is far from the whole story.

    • ido
      Aug 30 - 11:57 pm

      it blocks the receptors only for a short time.4-6 hours

      • Cort Johnson
        Aug 31 - 8:54 am

        Yes, it does but for some reason endorphin levels remain raised for another 18 hour or so…

  6. Iquitos
    Aug 29 - 9:01 am

    Gijs, the theory is that when the “reward center” is blocked by LDN, the body produces more of the natural opiates that help the immune system and other systems in the body, to compensate for the blockage, which is temporary at any rate.

    I take LDN in the afternoon and a pain reliever with codeine right before bed with good results. One of the docs who found that LDN supports the immune system later said he was sorry he ever advised patients to take it at night. Any time of day will work, upon experimentation to see what’s best for you.

    LDN hasn’t cured me either but it has added a great deal to my quality of life. I get it from India, without a prescription.

  7. Darlene
    Aug 29 - 11:35 am

    I have never heard of this drug before, but find it quite interesting. I wonder if it has ever been used exclusively for CFS patients. By that I mean those who don’t have pain, but are still very sick. I feel lucky not to have pain (aside from frequent headaches), but I’m still pretty much housebound. One of the most uncomfortable payback symptom I get is anxiety (for lack of a better word.) It doesn’t seem to be fear or unresolved issues, but the way my nervous system reacts to pushing too hard, even if it is doing something I love. Sort of Post Exertional emotional Malaise if you will. I’ve come to think of it as nervous system pain, but not experienced as physical pain. I haven’t been following new developments as I should, so any thoughts on this would be welcome.

    Obviously LDN isn’t a cure, but if it would work as well or better than the other “bandaid” medications and supplements I’m using that would be lovely. Thanks for making me aware of this.

    • Cort Johnson
      Aug 29 - 2:18 pm

      “Post Exertional emotional Malaise” – boy are we in the same boat (except that upset increases my pain… I’ve never used LDN but hope to try it at some point as well. Since its used in quite a few disorders I imagine it could be helpful for some people with fatigue but not pain.

    • Margo
      Aug 30 - 4:08 pm

      Darlene thank you for the term Post exertional emotional malaise – it exactly describes what I have never found words for but experience all the time.

    • Paul DB
      Sep 02 - 9:25 pm

      I, too, can relate to the “PEEM” you describe. Sadly, it doesn’t matter whatsoever whether the emotion is pos. or neg. — was just approved for SSDI after waiting 18 mo. and was down for 3 days because I’d gotten so excited. That’ll teach me! ;-)

      • Marilee Mouser
        Sep 09 - 4:27 pm

        Congrats on the SSDI—I’ve heard they’re getting faster!! For me, it was a full three years, minus one month….boy did a lot of things go wrong (financially) during the wait!

  8. joy kaye
    Aug 29 - 2:13 pm

    I would not be without my ldn! It helps pain and inflammation and IBS and everything! I do 1-2mgs per evening.

  9. Cort Johnson
    Aug 29 - 2:29 pm

    Here are the responses thus far to the survey. 33 people have tried it. Most found that they got their best response using 5 mgs or greater.

    • Pain - 30% thought it was very effective at relieving their pain, 39% thought it was somewhat effective and 30% got no response.
    • Fatigue - 12% found it very effective at reducing their fatigue, 22% found it somewhat effective and 66% got no response.
    • Sleep – 23% found it was very effective at improving their sleep; 35% thought it somewhat effective and 42% found no change.

    Here are the comments thus far:

    I started with1.5 mg for a couple of months, then cut back to .5 mg for another month, but did not feel better and developed vertigo-like symptoms that only went away when I stopped the medication.

    LDN was not successful, neither for me nor for my severely ill daughter!

    LDN made me feel generally worse, and gave me new symptoms, such as sore stomach, and it was starting to make me depressed.

    Helped somewhat with pain and sleep – but caused horrible depression. Went away when got off it. Did not help POTS. Still needed more pain relief – not effective enough. Had stopped Tramadol and found out you can take the Tramadol in the am and must take LDN at night.

    Wonder if the combo you spoke of would eliminate the negative that I found. Couldn’t stay on it – it wasn’t good. Bad outweighed the good.

    I have been on LDN for 7 months. It took me 4 months to work up to 4.5mg. I haven’t noticed any change in any of my symptoms, apart from minor gland soreness for a couple of days each time I increased the dose from 2mg onwards. I will continue to take LDN purely on faith.

    I am currently a patient of Dr. Teitelbaum. I took LDN at 4.5mgs but got horrible headaches so I had to stop after a few days. I even cut the dose in half but still got the headaches. I hear the headaches are not common. I am trying to make a connection… when my accunpuncturist would place a lot of needles in my back, I would get the same exact headaches. Hope this hopes!

    Been on LDN for 3+ yrs. Has greatly reduced pain. Without would likely be in wheelchair
    I quit taking it because I never adjusted to the sleep disturbance. It never got better. Maybe a lower dose would have been possible, but I didn’t know and my doc was shooting in the dark!

    Also helped relieve lower back pain

    Skip’s Pharmacy in Boca Raton gives the best service ever

    I have been dramatically helped by taking LDN, and plan on taking it for the rest of my life.

    Please research everything before you do it because there’s a lot of dosing misinformation in the article and in the replies. Put all capital letter in facebook search GOT ENDORPHINS LDN And come join a great safe friendly group lots of people with lots of different illnesses using LDN. God bless

    I have found that LDN helped me with some of my pain symptoms. At least in the moring I wake up and don’t feel like my legs will break. Also I get my ldn from Publix some of there pharmacies compound medicines and I don’t have to pay anything its covered by my insurance. You have to try its worth trying. http://www.sep.over-blog.com

    its the only thing i’ve tried that has seemed to work

    Didn’t do anything for me except significantly worsen my quality of sleep, which became very light. Worth a try, but overhyped for CFS. Show us the studies ;)

    I found LDN on a Charlotte CFS newsletter five years ago. My Integrative MD was immediately OK with prescribing…”it’s low dose, can’t hurt”.

    My Rheumatologist, Neurologist and PCP had never heard of it and were not interested in any of the information I brought in to try to discuss it with them

    Had no poitive effect at all and DESTROYED my sleep!

    It made me very depressed so I had to stop

  10. PM
    Aug 29 - 8:38 pm

    I’ve used LDN since 2008. It’s definitely no miracle cure but it relieves my pain. If I miss a dose one evening, the next day I feel more crappy than usual. I take it at the exactly same time every evening, adjusting for summer- and winter time.

    Many patients react negatively to LDN initially. I didn’t, my pain was somewhat reduced from the first day. My advice is to start at low doses and increase only when the initial dose feel too low. I started with 1,5 mg, and increased to 3 mg after 3-4 months, 4,5 mg after 6-7 months, and settled on 6 mg after one year. I’ve been on 6 mg ever since. Many people give it up too fast I think – give it time!

    On LDN we have to avoid opioids, but that’s no biggie. I use NSAIDs instead of opioid analgesic, and my pain is better controlled with «increasing wellness» on LDN than masking symptoms on opioids.

  11. Kathy
    Aug 30 - 1:13 pm

    Thanks for the info and feedback.

  12. Judy Harford
    Aug 30 - 4:22 pm

    I started taking LDN for Fibromyalgia in January of 2009. It has totally changed my life. I have gone from daily pain of 6-8 or more to 0-3. I have also gone from being practically bedridden and needing a walker to just get around my home to living a nearly normal life and even doing some traveling again. I recommend that everyone just give it a try. What do you have to lose?

    • Cort Johnson
      Aug 30 - 4:31 pm

      Congratulations Judy and thanks for letting us know…

  13. r. dernister
    Aug 31 - 6:26 am

    Three brief points. First, never underestimate the power of the placebo effect in evaluating drug efficacy. The patient’s belief and expectation that the drug will alleviate symptoms is often far more powerful than the action of the drug itself.

    Second, symptom alleviation for both refractory fibromyalgia and irritable bowel syndrome can often — but not always — readily be achieved by most sufferers through the time-limited use of hypnosis with a therapist who is trained and knowledgeable in this area. The rates of improvement in key areas (such as pain reduction, fatigue removal, and improved sleep) is far better than for virtually all medications. There are no side-effects and the cost of treatment is relatively low. The problem is not the efficacy of the treatment, it’s finding a qualified treatment provider.

    Finally, my overall point (aside from providing basic information) is simply that taking the new “pill of the day” is not really the answer. You don’t need or want yet another new pill: you want to end your suffering and get your life back, and medications rarely provide that as I’m sure we all are aware.

  14. George Henderson
    Sep 08 - 2:32 pm

    The theory that LDN works by endorphin stimulation may be, if not wrong, at least incomplete.
    Naltrexone interacts with the immune system via the TLR4 receptor in an anti-inflammatory fashion, and this has anti-nocioceptive effects.
    Natrexone is a TLR4 antagonist (like some antidepressants) while opioids are TLR4 agonists.
    Opioids produce analgesia via endorphin receptors, but produce tolerance, and often eventual hyperalgesia, via TLR4 agonism – the opposite effect to naltrexone. This means that naltrexone – perhaps at whatever dose it takes, not necessarily LDN – can potentially block the deep seated neural pain of chronic inflammation.
    I wrote about this here: http://hopefulgeranium.blogspot.co.nz/2013/03/our-first-song-for-today-is.html

    • Cort Johnson
      Sep 08 - 4:12 pm

      Thanks for the insights, George.

      • Lou Thomas
        Dec 10 - 6:34 am

        Brilliant blog, George!

  15. Lou Thomas
    Nov 11 - 9:17 pm

    We have been dosing 1.5 mg LDN for Parkinson’s and also for some costochondritis (an auto-immune syndrome involving the rib cartilage). We’ve been at this very low dose for about a month now, and it is surprising to us that it would have any effect at all, as we had just intended it to be an initial dose on our way to a more effective higher dose. But it has.

    At this level we have found that the costochondritis has disappeared and sleep is generally improved. Also, we have reduced Levodopa/Carbidopa from 8.0 mg per day to 6.5 mg per day, after occasional dyskinesias and frequent nausea arose at peak moments of the dosing cycle.

    We speculate that the calming effects of the LDN upon microglia have reduced neuro-inflammation and allowed some impaired dopamine-producing neurons to partially recover, resulting in an increase in endogenous dopamine production. At this very low LDN dose, perhaps these calming effects are sporadic and thus sometimes we still have some nausea at peak periods and sometimes dopamine falls a little short. There is sometimes a feeling of fatigue in excess of when we started the LDN, and again, this is speculation, but it seems possible that microglia are being calmed but then wake up again and are extra active when they do, which could use of energy through auto-immune activity, just as occurs with CFS and other auto-immune disorders.

    We plan to increase the dose soon, and hope that this will increase the positive effects already noticed, and also reduce the sporadic aspect of those effects.

    • Lou Thomas
      Nov 11 - 9:26 pm

      I would also note that dosing guidelines for LDN seem to be based mainly on the effect of dosing on levels of endorphins, perhaps because these levels are very easily measured. However, LDN has another mechanism of action, which is through microglial calming, and that probably has nothing to do with endorphin levels, as it works by blocking TLR4 receptors which otherwise would be attached to by substances such as Lipo-Poly-Saccharides that cause activation when they attach. So I’m not certain what level of dosing is optimal for the microglial calming effects as opposed to the endorphin-mediated effects. If anyone has information regarding this it would be of interest.

      • Cort Johnson
        Nov 12 - 10:01 am

        Thanks for the info on microglial calming…

    • Cort Johnson
      Nov 12 - 10:02 am

      Very interesting Lou – thanks!

      • Lou Thomas
        Dec 10 - 6:00 am

        Recently learned that gluten (gliadin, specifically) is believed to *stimulate* the same TLR4 receptors on microglia that LDN attaches to to *suppress* activation. So, we went on a strict gluten-free diet starting two weeks ago and have felt generally better so far as Parkinson’s symptoms are concerned. Although gluten has been known for some time to increase inflammation, its connection to this receptor is based on fairly new research:

        “Gliadin is an uncatalogued Toll-like receptor ligand”

        Digestive Disease Research Center, Tehran University of Medical Sciences, Tehran, Iran

        http://www.sciencedirect.com/science/article/pii/S2251729413000256

        Another piece of interesting information is that green tea attaches to the this same TLR4 receptor but tends to block it, like LDN, only perhaps less powerfully:

        http://www.sciencedirect.com/science/article/pii/S0006291X12016622

        “a major active polyphenol of green tea, has been shown to down-regulate inflammatory responses in dendritic cells (DCs)…In addition, EGCG-treated DCs inhibited lipopolysaccharide (LPS)-induced production of pro-inflammatory cytokines”
        Also apropos: “Autoimmunity, dendritic cells and relevance for Parkinson’s disease”
        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535404/

        We have been drinking lots of green tea every day for years and it is one of the things that has been most helpful in ameliorating the symptoms of Parkinson’s. Now we have a better idea as to why that may be the case.

        So, our new mantra is, “gluten free, and drink more green tea.”

        We’re hoping that the effects from the LDN will be even more dramatic. We suspended treatment a few weeks ago despite significant initial benefits, without ever getting past the 1.5mg dose level, due to nausea, which we suspected was due to a reaction to the Avicel filler we had selected. We have a new prescription now with a standard lactose filler and have just started again at 1.5mg yesterday, and so will post again in another month or so once we get to higher dose levels and hopefully see some additional improvements.

  16. Betsy
    Nov 26 - 10:03 am

    I don’t know if anyone will see this but will give it a shot. I’m about to try this and have heard that one must get off of tramadol which I’ve been taking of years and was dreading, but just saw a post that Dr. Teitelbaum says that if you take less than 300 mg a day you can stay on it. Could anyone confirm that? Also, my doc gave me a script for 30 pills of 4.5 which would cost 43 bucks and I’m wondering about going the Canada route and mixing it in water to draw up, but I don’t see how one can be assured the particles are evenly distributed throughout and with it needing to be accurate down to .5mg. Does anyone here do it that way? Thanks for any help.

  17. George Henderson
    Dec 10 - 7:47 pm

    Betsy,
    tramadol is the only opiod I know that doesn’t have TLR4 activity, this means it should (in theory) interfere less with what LDN is doing with regard to inflammation and the causes of pain. As for whether you will get withdrawals from tramadol, there is such a thing, at least psychologically, but if you start off with a very low dose this might be OK, see for example
    http://www.ncbi.nlm.nih.gov/pubmed/12703669

  18. Jean
    Mar 06 - 12:41 pm

    I have been using LDN (Low Dose Naltrexone) for 3 years now. I had great success with it relieving achy muscles throughout my body.

    I was in Mexico at the time and only had access to 50 mg pills so had to mix with water and then use a dropper to suck up the 4.5 mg.

    I used 50 mg. in 50 ml of water and then 4.5 ml in the dropper.

    Very few side effects. Had vivid dreams but nothing else of significance.

    On day 4 I woke up feeling no aches at all. At the end of one month I started to have random jerking of my legs at night and discontinued use.

    BUT – the aching muscles did not come back for 6 months. At 6 months I again took it for one month and then went off it again. Again, no aching muscles from day 4 onward. Stopped at 1 month and didn’t need it for 6 months again.

    For me it’s been a true lifesaver.

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