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.
As for official recommendations on this strategy of lowering the dose and/or reducing the frequency, the LDNScience website (see below) says on its Q&A page: "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."An even better resource is this article recently written by Jayne Crocker of the LDN Now group, LDN: Long-Term Use, which describes exactly this strategy and WHY it not only works but is more effective.
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.
Please feel free to share your own experiences with LDN in the comments section.
This is so helpful. Thank you for putting all this information together.
ReplyDeleteSue, 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. :)
ReplyDeleteYou 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
havn't been on it that long; but thanks for sharing, now i know
ReplyDeleteI 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.
ReplyDeleteHello,
ReplyDeleteI'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
Hi, Christina -
DeleteThere 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
I don't know if I had as much pain as Christina suffers from. I took Hydrocone 10 mg every night for my fibromyalgia pain and so I could sleep and not fight the pain. And had been doing this (with increases in dosage) for a number of years. I was petrified of coming off the HCDone. My PA said that if I didn't get relief to come into the office in 4 days and she would give me a script. I took my HCDone at night one night, took none during the following day, then took the LDN that night. When I woke up the next morning, I stood beside the bed to test my pain. This was my normal wake up routine. How badly did I hurt? What could I actually do that day. That first day I felt like I had the normal pain of a 62 year old person. I was ecstatic. I take an OTC pain reliever at night (nalproxin) and LDN and that is it. When I hurt now, it is because I am able to do so much more, that I overdo. Christina, please try it. Just go without your opioid for one day during the day, then try the LDN. If you can manage it, do that for a couple of days and see how you feel. You will be in my prayers.
DeleteThanks so much for sharing your experiences with Christina - I think this decision (pain killers vs. trying LDN) is a tough one for many, and it always helps to hear from someone who's been through it!
DeleteSue,
ReplyDeleteI'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
Hi Sue,
ReplyDeleteCan'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
You're welcome, Christina - I'm glad to hear you are getting some help!
DeleteYou 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
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!
ReplyDeleteWe have a long and fascinating thread on skipping doses at our group https://www.facebook.com/groups/GotEndorphins/
ReplyDeleteIf you would like to join and tehn tag me I'll direct you to it :)
Sue, regarding reducing doses you may be interested in this article at our FB group.
ReplyDeletehttps://www.facebook.com/notes/got-endorphins-ldn-low-dose-naltrexone/first-3-to-6-months-of-ldn-therapy-ldn-symptoms/116210538463736
Please consider adding our group to your list of resources. We have over 17,500 members
https://www.facebook.com/groups/GotEndorphins/
Thanks, Brian! I appreciate it & will share the link :)
DeleteHello... just happened to run into this blog.
ReplyDeleteAfter reading this, I thought it might be valuable to know about biotoxin illness as a potential root cause of many (all?)the conditions listed.
Biotoxin illness can come from mold exposure or Lyme/biotoxin producing infections.
The illness strikes people who have an underlying genetic variation in their HLA gene. This gene has immune regulatory function. People with the abnormality cannot eliminate the toxin, so constantly recirculate the toxin.
This causes chronic innate immune system inflammation, as if the person is infected constantly.
The domino effect of this is:
1. poor mucosal immunity and colonization of the nasopharyngeal passages with a drug resistant Staph (MARCoNS). This staph secretes its own toxin that disrupts the brain hypothalamic production of a central regulator called MSH.
2. Low MSH leads to the peculiar neurological problems, pain (MSH regulates brain endorphins), and inefficient sleep. Low MSH also leads to disruption of ADH hormone and salt balance... this is what probably causes bed wetting, thirst, and sensitivity to static electricity that many complain of.
Fortunately, treatment is reliably effective, unlike my experiences with Lyme disease.
I am not affiliated with the mold/biofilm expert but this is the most valid researcher that I am aware of:
www.survivingmold.com
Best wishes to you all...
I've been battling "lyme" and a myriad of other problems (wife, 3 of 4 children) in a somewhat progressive circle for 10 years... finally discovering the biotoxin problem recently and now everything that we've experienced makes sense and is treatable.
Jamie - Thank you so much for sharing your experiences and this information. It's very interesting. It doesn't sound like it is likely affecting my son and I (neither of us have neurological problems or pain), but I am going to look into it and ask our dietician/biochemist about it - we have had genetic testing and she helps us interpret the results.
DeleteThanks again!
Glad to hear you are finally improving after so many years - I hope it continues!
Sue
Jamie, Is the HLA gene observed on a 23andme test? Also, is it the same gene that is responsible for the GSTT1 and EPHX1 enzymes
DeleteRegarding 23andMe, I do not have personal experience with what they are testing.
DeleteLabCorp runs the HLA gene testing for bio toxins:
HLA DR B1, B3, B4, and B5
HLA DQ (same as for celiac)
My genetic expertise is limited... so I'm sorry that I cannot comment on the GSTT1 and EPHX1 enzymes, their loci or functionality... complicated stuff!
I wish you the best Anonymous!
I was wondering the same thing - whether I could look up this genetic defect on my 23andme results - I will ask our dietician/biochemist - she is brilliant about this stuff!
Delete