arrow28 Comments
  1. Betsy
    Apr 15 - 6:09 pm

    I’ve been on LDN at various doses for almost 4 months and it’s not helping. Does anyone know about taking ultram with it? I’ve cut down to just 75 mg in the morning and take the LDN in late afternoon. I read that Dr. Teitelbaum thought a small amount of ultram would be ok? Also, even if it doesn’t improve symptoms, is it good to take for general immune function? And is there really a best time for it? I’ve read conflicting info on that too. Would be grateful if anyone could clear up this confusion.

    • jsuzor
      Apr 15 - 6:47 pm

      On facebook I have learned a lot from a few different groups. My favorite so far is called: GOT ENDORPHINS? LDN (Low Dose Naltrexone) You can read there and learn from others. I am not on LDN due to the fact that I am limited by what doctors I can see. So far I haven’t found one who takes my insurance who is willing to prescribe it. I am currently seeing a new Doc in Palm Coast FL named Dr. Daniel Dantini and he does anti-viral testing so that is the direction I am going in currently. I know this group is familiar with that doc. If anyone has feedback on his approach I would be interested in hearing it. I am reluctant to do anti-viral meds but am probably going to do it. I will be seeing the doc for my blood test results in a few weeks.

      • Alyssa Reid
        Apr 16 - 3:15 am

        Hi there, if you got to the Facebook page LDN Research Trust or contact the website for them that Cort has put on this article, they can help to put you in touch with a doctor who will prescribe LDN.

        I just went to a meeting a few weeks ago where the pharmacist who compounds it in the UK spoke…he said ‘it is safer than taking aspirin’!

        We just gotta get the word out and get doctors up to speed with this medication and how it is helping people!

        A.

      • Betsy
        Apr 16 - 8:10 am

        Good luck jsuzor, sure hope the anti vitals help you. I’m considering them too but also hesitant. Still……

      • Renee
        Apr 25 - 1:27 am

        Thanks Jsozor for the props on the group!! We do keep it nice and friendly and supportive! I added the website link https://www.facebook.com/groups/GotEndorphins/

    • Colleen Stanturf
      Apr 15 - 11:19 pm

      Betty,
      I take LDN at 9pm. Sometimes that is right at bed time, sometimes I stay awake for another couple hours. I can take instant release morphine during the day if I really need it for pain, because it does get out of your system in a couple hours. I recommend you try taking it at night and see if that makes a difference. You should be able to take ultram in the day if you need it. And hopefully you’ll get better results letting it work at night. A good site for reading about LDN is LDNScience.org. Good luck!

    • Alyssa Reid
      Apr 16 - 3:10 am

      Hi there, you need to leave a 4 hour window on either side of taking Ultram with LDN. ie. take the Ultram up to 7pm and then take the LDN after 11pm.

      Everyone seems to be different in regards to the best time to take it – the best suggestion is to try it in the morning if you have been taking it at night or vice versa. Also, some people actually take 2 doses (divided of course), morning and night.

      There is a lot of great support, help and advice on the Facebook page called LDN Research Trust.

      A.x

  2. Rich Perillo
    Apr 15 - 6:24 pm

    Naltrexone is available at alldaychemist on line, without prescription but at 50mg, it needs to be diluted in water to get the “low dose”, 1 to 4.5 mg. Cheap but must be ordered as Naltrexone, not lDN. RP

  3. Steve
    Apr 15 - 6:30 pm

    Sorry to hear it is not effective for you. I’ve been trying to figure out how to get an LDN trial for my FM pain, getting much worse over the years. Maybe subtypes of FM with those high inflammation markers are the only responders. I don’t have any inflammation marker tests on my last blood tests and my PCP would not prescribe this off-label anyway. This recent study may push me to look into traveling out of state to find a prescriber. It’s odd that one standard prescription naltrexone tab, titrated at home by a careful FM sufferer, could provide him with a lot of med. Too bad I don’t know any addicts. The risk/reward for this med looks pretty good to me.

    • Alyssa Reid
      Apr 16 - 3:12 am

      Hi there, contact the links that Cort has put on this page for LDN Research Trust – they can put you in touch with doctors (and pharmacists) that will prescribe for you. (They work with 154 different LDN Member Countries – and have excellent access in order to help you!).

      A.x

  4. Steve
    Apr 15 - 6:32 pm

    Wow, you posted while I was writing, thanks, will check it out.

  5. eve axelrad
    Apr 15 - 11:17 pm

    My dr. is in longevity medicine. I tried ldn on 2 different occassions and found no success with it. I have had fibromyalgia/cfids for 26 years.

  6. Alyssa Reid
    Apr 16 - 3:19 am

    I just want to point out that LDN can take up to 6 months for people to notice a marked difference. In saying this, unfortunately, it doesn’t work for everyone, but equally, it is important to give it time.

    For me, although my pain is still here, I am sleeping!!! Full nights!!! Which hasn’t happened in 20 + years! And I also have more energy and my fibrofog has cleared quite a bit.

    I would also say that if you aren’t tracking your daily pain levels, sleep, mood, energy etc then sometimes it is hard to see a slow but positive change until you look back at your records.

    A.x

    • Betsy
      Apr 16 - 8:08 am

      I’d never heard it could take up to 6 months. Thanks for all the info Alyssa.

    • Cort Johnson
      Apr 19 - 1:32 pm

      That is really good to know because I tend to drop things quickly. I agree that it’s hard to tell sometimes that you’re making steady progress unless you keep track of things. Dr.Peterson has said the same thing; the patients sometimes are the last to notice. :)

  7. Susan Kennedy
    Apr 16 - 7:30 am

    I’ve taken LDN first at 4.5mg for a month or so then switching it over to am rather than pm. I also took Tramadol with the LDN which my doctor/pharmacist (compounding) said was ok to do. No results. So, I was bound and determined to start at a low dosage and work up until I found my “best working” dosage for me. I went back to 1.5mg for 1 month and jumped up .05 every month. Well, I got to 3.0mg and still nothing. I could no longer go on as my fibromyalgia/CFS required more pain medication (you cannot take opied(sp) pain meds (oxy, morphine, hydrocodone etc) along with the LDN as it is an antagonist. I still wonder why the allow you to take the Tramadol with it as it is listed as an opied too. Well, my doctor told me I could as long as I took any of my pain meds 4 hrs before or 4 hours after (4 hour window). There are conflicting theories with this as you will find. I was a member of GOT LDN website as well. I does seem to do wonders for many especially people with MS. I just never saw any results nor could I go any higher on the dosage due to my need for opied pain med relief. I was hoping to one of the people blessed by LDN. I guess not.

    • Cort Johnson
      Apr 19 - 1:34 pm

      You gave it a great try. I’m going to have a post on other microglial inhibitors coming up. May be there will be something in there for you.

  8. Vivi-Mari Carpelan
    Apr 16 - 8:37 am

    I now live in the UK (relocated from Finland) and have tried to get hold of LDN through national health service since I have little money to spare. They are unable to issue it because it hasn’t been approved by the government. My husband suggested trying to get it from my GP as a private patient. My doctor would have been quite willing but was unable to get hold of small doses. He also lamented the fact that it hasn’t really been proven effective (of course he had to say that…). It’s a disgrace. I understand that it works for many people with ME but was unsure of FM. This article was helpful in convincing me that I should try it. I can get it online but it’s going to cost a lot of money which I don’t have, as I survive on a disability pension. However, it does sound as if it could be worth a try. My insomnia and lack of libido are only getting worse in spite of my best efforts. Thank you.

    • James
      Apr 18 - 1:01 am

      You can get the regular 50mg tablets use water to dilute them. For example one 50mg tablet in 100ml of water would be 1mg/2ml of solution, so to take 4mg you would take 8ml of solution which can be kept in the fridge. Any of the online groups mentioned can confirm exactly how to do this. In any case the ldnresearchtrust.org mentioned above is in the UK, they should be able to help you. The tablets should be very cheap even if you have to pay for them yourself, just get your doctor to write the prescription.

    • Cort Johnson
      Apr 19 - 1:36 pm

      It sounds like it’s pretty cheap in the US and if you have compounding pharmacies in the UK hopefully it will be there as well. I know when money is low ANYTHING is expensive.

      Check out the LDN trust for prescribing doctors and pharmacies. Hopefully they have some. Good luck!

  9. John
    Apr 16 - 11:35 am

    I tried LDN but had some side effects and had to quit taking it. I’ve heard that it takes a while to work but without knowing whether it def would or would not work I just couldn’t keep it up to find out.

  10. Justin
    Apr 17 - 10:17 am

    I ran out of LDN last week after being on it for 2 years. Its taken me a week to get back to what was normal. I can only describe what it was like last week as suffering from “restless body”!! Itching, twitching, waking up and having to jump out of bed to get any kind of relief from restless legs etc… I’m now back on LDN and sleeping through the night. Thank god for LDN!!!

  11. Renee
    Apr 17 - 2:24 pm

    I just had my SED lab taken and it’s only a 1 three years ago before I started LDN it was 20! Halla!! https://www.facebook.com/groups/GotEndorphins/. Yes I agree got e Is a good group go join

    • Cort Johnson
      Apr 19 - 1:38 pm

      Wow… Jarred Younger would love to hear that. :)

  12. […] Low Dose Naltrexone: “We discuss the concept of using low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain conditions that are suspected to be associated with inflammatory processes.” (article found here) […]

  13. Monica Bolton
    Apr 22 - 1:30 pm

    The original medical article by Younger et al doesn’t mention CFS/ME once. Why? Because there are no case reports in the medical literature of people with CFS/ME improving when they take LDN. (Our anecdotes on the web don’t count as far as doctors are concerned.) If researchers are to get funding for clinical trials of LDN in CFS/ME they need case reports first to build on.
    I am willing to have my story written up – I’m one of the lucky ones who have responded well to LDN. Are there others who could also volunteer? Ideally you shouldn’t be using any other medication as that would confuse the picture, and if you had objective evidence of improvement, such as returning to work, that would be even better.
    There’s also the problem that people who get better tend not to follow posts – they are back at work. So if you know anyone who would be suitable – can you ask them as well?
    Here’s a link to the LDN Trust newsletter where I asked for volunteers.

    http://ldnresearchtrust.org/sites/default/files/Jan%202014%20use.pdf

    Thanks
    Monica

  14. Kristi
    Apr 29 - 3:19 pm

    I’ve been on LDN for about a year. I am very sensitive to any medication, so I started at the lowest dosage 0.2mg for a few weeks, then 0.4 then 0.6. I’m still at 0.6. Side effects include nausea. I hadn’t heard about that before taking it. It works very well for me for fibro. This winter in Chicago was brutal and without the LDN I would have been in a world of pain, but with the LDN, the pain was quite diminished.

  15. Kathleen
    May 08 - 1:16 pm

    I do not remember if I posted the results of my using LDN. I used the LDN for over 6 moths, first using the lower dose and then increasing it gradually over several weeks. Unfortunately, I received no relieve.

Mobile Theme