Sunday, August 31, 2014

Low-Dose Naltrexone Update and Dosing

Long-time readers of my blog will recall that I started taking low-dose naltrexone (LDN) a long time ago - almost 6 years now. It was one of the very first ME/CFS treatments that actually made a significant difference for me and caused obvious improvement in my overall condition and quality of life. Here I want to share a brief update, as well as something new I've learned about dosing with LDN, and some newer links for more information.

For background for those who are unfamiliar with LDN, I suggest you read these earlier posts: my introductory post on LDN and my experiences and an LDN update, including dosing information and how to get started.

Long-term Dosing
So, fast-forward 5 1/2 years...earlier this summer, I was wondering whether LDN was still working effectively for me after all these years. I felt as though I wasn't doing quite as well as I had been when I first started it, that perhaps it wasn't working for me anymore. I turned to the Facebook LDN for Fibromyalgia and CFS group I belong to and posed the question to others who take LDN for these illnesses. Two different people said they'd heard that after being on it for several years, you may have to either lower the dose or take it every other day to keep it effective.

So, figuring I had nothing to lose and it couldn't be harmful to take less, I tried switching my dosing to every other day (still at bedtime and still 3 mg). Wow! Like magic, I felt a surge of energy on this new dosing schedule, just like when I first started LDN almost six years ago. After a week or two (I am always the guinea pig in our house), I switched my son to the same alternating-days dosing schedule. We are both doing well with this.

I have searched and searched online and can't find any official recommendations to do this...but again, how could it be harmful to take less of a medication that is already such a tiny dose? The one hint I could find was on the LDNScience website (see below). On its Q&A page, it says "Can your body become accustomed to LDN's rebound effect?" And their answer is:

"In theory the answer is yes, and therefore it may make sense if LDN is losing its effectiveness to take a break from using it every so often. This question has not yet been addressed in clinical trials."

Well, it has certainly worked for me and my son!

More Information
If you have not yet tried low-dose naltrexone, here are some great resources for learning about it yourself, discussing it with your doctor and educating him/her, and how to obtain it and get started on it:
  • LDN Homepage - the oldest of the LDN websites and no longer being kept up-to-date, but it was started by the doctors who pioneered its use and is still a great place to start to understand what it is and how it works. There is also a list of compounding pharmacies that supply it (we still use Skip's in Florida).
  • LDNScience - a public information project of the  MedInsight Research Institute, this website provides excellent scientific information on LDN, including a short video that explains how it works, the Q&A section I mentioned above, success stories, and a How to Find a Doctor search engine.
  • LDNers - a website focused on the use of LDN in MS but with information relevant to other illnesses as well, including a list of research studies on LDN.
  • Stanford FM study - positive results of a study conducted at Stanford on using LDN for fibromylagia patients (big shock - there have not been any studies done yet on ME/CFS).
  • LDN Research Trust - a UK organization dedicated to research and education on using LDN for various immune disorders, like ME/CFS (and relevant anywhere, not just the UK). The site includes a wonderful LDN Information Packet that is ideal for sharing with doctors plus specific information on how to obtain LDN in the UK.
  • My overview of LDN and my own experiences starting it, 2008.
  • My 2010 Update on LDN, including details on dosing and how to get started.
I think that about covers it. Since immune system dysfunction is at the heart of ME/CFS, and LDN is one way to help normalize the immune system (see also my posts on Imunovir/inosine), this is a treatment that gets to the root cause of ME/CFS. It has definitely helped us...and now with this minor tweak in our dosing schedule, it continues to help us.

Please feel free to share your own experiences with LDN in the comments section.

12 comments:

  1. Anonymous11:12 PM

    Great piece Sue, Yes I do mention this in my group all the time,https://www.facebook.com/groups/GotEndorphins/ I read it from posts of Skip Lenz from Skips compounding in FL.

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  2. This is so helpful. Thank you for putting all this information together.

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  3. Sue, this is wonderful news! I'm excited for you! Less is more! (we started taking our supps every/other day and so far so good, and we're saving so much money.) Do you also take LDN for insomnia? It's been a couple years since I've been around Blogger, and, well, of course I'm too lazy to research your blog. :)

    You probably remember about me from my previous blog (that I killed, but I have a new one)---and you certainly know a lot more about me now that I'm happily on Facebook---that my personal mission is to treat my ME/CFS without meds. I have actually CURED my insomnia, Sue, after nearly 17 years suffering from it. I always *knew* I'd find a way, and my patience and belief has paid off. I have to tell you and your readers about it!

    You've heard me share a lot about Structured Water on Facebook, and I recently shared about how it seems to have cured my insomnia! Sue, I am HAPPY DANCING! This is the GREATEST gift SW has given me thus far, in the 9 months we've been using it, and there have been many gifts including more energy and better mood. I am the most grateful pwc on the planet right now. It's been about a month, Sue, a month of not waking up at all most nights (I can't count the nights cats or college kids wake me!) :) My "norm" had been waking up 1-10 times a night.

    I could go on and on and on because I want to help others and because I'm so happy I just can't help rejoicing. I will post my website instead of rambling though! www.structured-water-devices.com. I believe in SW so much, I became a scout for a distributor. (It's not an MLM company.)

    Again, I'm so happy for you guys!

    xoxox, Judy

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  4. Anonymous4:34 PM

    havn't been on it that long; but thanks for sharing, now i know

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  5. I always skip a dose once a week to keep it from building up too much. Also, I messed up my schedule and missed several doses during our move, so I went back down to 3 mg. I have felt that surge again, at least a little bit. I'll have to keep this alternating dosing schedule in mind when I feel I've reached that plateau again.

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  6. Anonymous7:15 AM

    Hello,
    I'm EXTREMELY interested in trying LDN for my severe ME/CFS & my Dr is on board. The only thing holding me back is I currently take oxycodone to manage my pain. My Dr explained LDN will stop opiates from working. I'm fine with weaning off the pain meds to give the LDN a try. But while I'd love to start the LDN I'm afraid of having untreatable pain. Has anyone had a similar experience & If so how did you proceed? I'm homebound & frequently bedbound by the severity of my symptoms. I'm desperate to get my life back & at this point I think LDN could very possibly improve my quality of life. Any & all advice will be greatly appreciated!

    Thank you,
    Christina

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    Replies
    1. Hi, Christina -

      There was just recently a looong discussion on this topic (LDN vs. opiate painkillers) on an LDN for ME/CFS group on Facebook. Pain isn't an issue for me, but among those for whom it is, the general consensus seemed to be that it is worth it to go off the opiates for a while and give LDN a try. Most people who'd tried LDN said it helped reduce their pain so that they no longer needed pain killers. So, that's some feedback based on others' experiences. Here's the FB group in case you want to join and read the responses for yourself:

      https://www.facebook.com/groups/108424385861883/

      One other thing to consider...when pain is such a significant part of ME/CFS, then Lyme disease and other tick infections are a very real concern. There are no accurate tests for Lyme - the only way to know for sure if you have it or to rule it out is to visit a Lyme expert (LLMD). here is more information - I urge you to consider this very real possibility. If Lyme or other infections are present and left untreated, you will only get worse over time:

      http://livewithcfs.blogspot.com/2014/06/why-everyone-with-mecfs-or-fm-should-be.html

      Good luck with LDN!

      Sue

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  7. Sue,

    I'll look at all the information you provided. I can't say enough how much I appreciate your response.

    I'll let you know how it goes

    Thanks so much,
    Christina

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  8. Hi Sue,

    Can't tell you enough how much I appreciate the information. I'm going to try it. Have an appointment with my Dr this week so I'll discuss the pain issue. I'm willing to try anything at the point I'm just alive not living. And I physically feel like I'm dying.

    I am currently being tested for Lyme I'll have to get the details on the accuracy of the test. She's also testing for EBV & everything else she can think of. It is an MD and homeopathic Dr that ordered it shares your opinion on my pain & I agree. I've been diagnosed with Fibro too but I don't think my pain is consistant with the Fibro pain. My ME/CFS worsened with a UTI/kidney infection & stones in 2010. At that time my EBV levels were over 600. I was treated with Chinese medicine acupuncture herbs & an EBV treatment & they had down to the 200s. I lost my insurance that covered "alternative medicine" so I was forced to stop that treatment. Chinese medicine is also what finally got rud of the UTI infection after being on months of oral, injectable, & IV antibiotics. I've heard that being on so many antibiotics & for so many years is also a contributor to my disease. I've just gotten progressively worse the last 1-2 years dramatically. I've also spoken with a Dr in Japan regarding Mycoplaysma infections (may be incorrect spelling). I have a friend who has gotten extreme improvement after being treated for Mycoplasma pnammonia. Unfortunately my insurance wouldn't cover any of this and being on disability doesn't leave any extra money. I have high hopes in LDN being affective. I'm so glad I came across Your blog. Hearing from you & others who are having similar health issues & sharing your experience is extremely helpful. . Thank you so much for sharing your experiences & story.
    I hope one day I'll be able to share my experiences in hopes if helping others.

    Thank you again!
    Blessings,
    Christina

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    Replies
    1. You're welcome, Christina - I'm glad to hear you are getting some help!

      You might also consider methylation issues - this is very likely a problem for you, given your illnesses and also your history of long-term antibiotics (like my son and I). It's a complicated subject but is treatable with supplements (OTC). Here's more information:

      http://livewithcfs.blogspot.com/2014/04/the-methylation-cycle-central-to-mecfs.html

      And Lyme is only one of many tick-borne infections out there that can cause pain issues (plus the testing is not reliable), so the best way to know for sure is to see a Lyme doctor. Here are tips on how to find one near you - they don;t all process insurance but ours is covered as out-of-network when we submit the bills ourselves:

      http://mylymediseasetreatment.com/lyme-disease-general/how-to-find-a-lyme-literate-doctor-llmd-in-your-area/

      Good luck!

      Sue

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  9. Anonymous1:31 PM

    I'm glad LDN has been helpful for you and your family. For the sake of informing anyone who may read these comments, I'll share that for me, LDN only caused negative side effects - insomnia, nightmares, a flare of pain for a half hour after taking the pill, morning "hangover" - and no gains. I slowly eased up on the dosage across several months but the side effects just became worse and my energy level dropped. I felt better/returned to baseline, when I stopped taking it. So, if LDN doesn't help you, you are not alone!

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  10. We have a long and fascinating thread on skipping doses at our group https://www.facebook.com/groups/GotEndorphins/

    If you would like to join and tehn tag me I'll direct you to it :)

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