04.21.2016

An interview with Linda Elsegood, editor of “The LDN Book”

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If you’re a subscriber, then you may know I’m a big fan of low-dose naltrexone (LDN) as a treatment for fibromyalgia. It’s the only pharmaceutical that’s ever helped to relieve my pain.

Two small Stanford University studies have shown LDN to be more effective than any of the three drugs approved by the U.S. Food & Drug Administration to treat fibromyalgia. And yet, few fibromyalgia sufferers know about this drug and how effective it can be at relieving pain. I’m doing my part to change that!

And so is Linda Elsegood, founder of the LDN Research Trust and editor of “The LDN Book,” just released in February. I recently reached out to Linda to see if she’d be willing to chat about LDN and how it might help those of us with fibromyalgia. Hope you enjoy our interview!

(This post includes affiliate links.)

Linda Elsegood, editor of "The LDN Book" and founder of the LDN Research Trust, discusses how low-dose naltrexone can be beneficial for fibromyalgia and other conditions.

A lot of people may not have heard of LDN. What is LDN and how does it work?

LDN is just that, a low dose of naltrexone. Here’s a short version of how LDN works: LDN blocks opioid receptors temporarily, which causes an increase in endorphins. They in turn help promote healing, inhibit cell growth and reduce inflammation.

(Editor’s note: These videos give a more comprehensive explanation for how LDN works.)

What’s the difference between LDN and regular naltrexone?

Naltrexone is used at dosages of 50 mg to 150 mg per day for alcohol and drug addiction. LDN is generally prescribed at dosages of 1.5 mg to 4.5 mg per day for autoimmune diseases and cancers.

You have benefited from LDN as a treatment for multiple sclerosis. Could you share what your symptoms were like prior to LDN and how it has helped you?

Before LDN I was surviving and not living. I had many MS symptoms, which included brain “fog,” cognitive issues, no leg strength/balance, no bowel or bladder control, double vision, loss of hearing in the left ear, numbness, pins and needles, vertigo, slurred speaking, choking on food, twitching muscles, restless legs, burning limbs, pain, and I was a wheelchair user. As time went on, the list kept getting longer. I was told I had secondary MS and nothing more could be done for me.

After 3 weeks on LDN, I noticed improvements and continued to improve for 18 months. I felt that I had been given a second chance and had my life back. I still had MS but it no
longer had me!

Stanford University has completed a couple of fibromyalgia/LDN studies in recent years. What were the results of those? And how can LDN possibly benefit someone with fibromyalgia?

The results of the LDN/fibromyalgia studies by Dr. Jarred Younger when he was at Stanford University were similar to the results of the earlier, smaller study – participants experienced a significantly greater reduction in their pain scores while they were taking the LDN as compared with a placebo. They also reported improved general satisfaction with life and improved mood while taking LDN. However, there was no improvement in fatigue or sleep. All participants tolerated the LDN with few side effects.

LDN is a widely available, inexpensive medication with few side effects that could prove to be a useful treatment for fibromyalgia. More studies are needed to determine if it will provide long-term, safe and effective relief of the pain of fibromyalgia in a majority of patients.

Dr. Younger believes LDN has an anti-inflammatory effect on the brain. He said, “This is one of the few drugs that can do that in the brain because it crosses the blood-brain barrier.” He is now working at the University of Alabama [at Birmingham] in the Neuroinflammation, Pain and Fatigue Laboratory, which is exciting news for those with fibromyalgia.

(Editor’s note: Dr. Younger is currently raising funds to open a new clinical trial center to fast track fibromyalgia treatment research.) 

Can you take opioids and also take LDN? I’ve heard differing opinions on this issue.

It is not advisable to take any opiates with LDN.

However, in certain circumstances doctors will prescribe LDN along with opiates under close supervision. In those circumstances, the opiate has to be fast-acting as LDN and an opiate cannot be in your system at the same time.

Warning! If you take LDN while an opiate is in your system, you could go into withdrawal. Do not consider taking both without help and guidance from an experienced LDN prescriber.

In addition to fibromyalgia and MS, LDN has been found to be helpful in other conditions, right?

LDN could potentially help with any autoimmune disease or cancer if there is an autoimmune component. So far we have a list of over 200 conditions that LDN has helped.

"The LDN Book" edited by Linda Elsegood

“The LDN Book” edited by Linda Elsegood

Why haven’t more patients and physicians heard of LDN?

LDN is getting known better globally with the aid of the LDN Conferences, “The LDN Book” and the Vimeo interviews, but until LDN has been through rigorous clinical trials, it can only be prescribed off label on a named patient basis.

If someone is interested in trying LDN, what would be your advice for them?

I would suggest anyone interested in trying LDN to print out our LDN information pack and take it to their own doctor who might prescribe LDN.

Sometimes it’s difficult to find an LDN-friendly doctor. Why is that? Any tips for finding one?

If your own doctor won’t prescribe LDN, all is not lost; there are thousands of LDN prescribers.

The LDN Research Trust holds a private list of LDN-knowledgeable physicians, plus on the website you will see a list of prescribers who have given their permission to be identified as such on our website. We are always happy to help patients find an LDN prescriber regardless where in the world they live.

You founded the nonprofit LDN Research Trust. Can you tell us a bit about the Trust, its work and the resources available on www.ldnresearchtrust.org?

The LDN Research Trust is a U.K. nonprofit registered charity, run solely by volunteers. We help and support people globally. We receive no funding and are only able to continue with the support of donations.

On our website, we have a wealth of information including links to fact sheets, clinical trials, past LDN Conference videos, which are available to watch online, and Vimeo interviews with LDN prescribers, pharmacists, researchers and users – we have over 500 now!

We also have lists of LDN prescribers and pharmacists, as well as private lists where we don’t have permission to identify the individual prescribers or pharmacists on our website. We are happy to help anyone wherever they live to find an LDN prescriber.

We developed an LDN Health Tracker App, which is free to download on any up-to-date device with a fast internet speed. We have hundreds of people using it, and they find it is very helpful.

We are also on Twitter, Google+, LinkedIn, and we have several Facebook pages and a closed group. We are always pleased for people to connect with us. The Trust also has a forum.

The LDN documentary we made can be found here, and our LDN and cancer documentary will be available as soon as the groundbreaking research paper is published.

The aim is to help initiate and support clinical trials so that LDN can be freely available for all conditions where LDN could potentially be of benefit.

Please tell us about your new project, “The LDN Book.”

“The LDN Book” has had amazing reviews, far past my expectations! It is a very useful guide to LDN, covering the history and pharmacology of LDN, multiple sclerosis, lupus, inflammatory bowel disease, chronic fatigue syndrome, fibromyalgia, restless leg syndrome, depression, autism, cancer, how to approach your doctor, frequently asked questions and more.

We were privileged to have LDN expert doctors and pharmacists write the chapters for us, and they are all giving royalties to the LDN Research Trust, which we are very grateful for.

“The LDN Book” has been praised by the medical profession, LDN users and potential users. Anyone with an autoimmune disease or cancer will find the book very useful in their research into LDN.

Have you tried LDN? Has it helped? Please share your experience in the comments section below!

If you enjoyed this post, you might also like:

“Naltrexone changed life of fibromyalgia patient”

Low dose naltrexone is an emerging treatment for fibromyalgia. In early research studies, about 65 percent of patients experienced a significant reduction of symptoms.

A helpful LDN resources page

There's an effective drug for fibromyalgia and ME/CFS that your doctor might not know about

Read my review of LDNDoctor.com, a service that provides online consults for U.S. patients.

LDNDoctor.com provides online consultations and prescriptions for low dose naltrexone via U.S.-license physicians.

Each week, FedUpwithFatigue.com covers the latest news, research and practical tips to help you live better with fibromyalgia and ME/CFS. If you liked this post, please sign up for updates below.






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Comments

  1. Suzanne says:

    I have been taking LDN for 4 weeks, and I feel that it has worsened my symptoms. 🙁 I was SO excited to try this new drug since I have been battling fibro for over 20 years. I found a doctor who would prescribe it for me, and I started on 3.5 mg at bedtime. I experienced horrible insomnia, hot flashes, night sweats, and tingling in my extremities. I called my dr and he changed my dose to 1 mg in the mornings. Unfortunately, none of the previous symptoms stopped, and I also began having major muscle and joint pain and migraines. I stopped taking the medication 2 days ago. I am really sad because I just knew that LDN would help me!!! Anyone else have experience like this?

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Suzanne, it sounds like your physician may have prescribed too large of a dose for you to start on. Because we can be super sensitive to medications, most people w/ fibro find that it’s best to start low – usually around 1 mg or 1.5 mg – and then increase slowly over several weeks to find their sweet spot. Too much LDN too soon can cause the side effects you mention. I’m not a medical professional, but if I were in your position, I would consider stopping LDN altogether and let it clear out of your body for a couple of weeks. Then I would resume at the much lower dose and titrate up very slowly over several weeks. Starting low and increasing gradually usually lessens or stops the side effects. I know some people do very well at the low doses. Others, like myself, require higher doses, 3-4.5 mg. Sometimes it takes several weeks to see the benefit.

  2. Can LDN be taken with Tramadol?

    • Donna Gregory/FedUpwithFatigue.com says:

      It depends on who you ask. In official circles, most LDN experts will say to never take any kind of opioids if you’re also taking LDN. But w/in LDN support groups, it’s pretty common for people to use Tramadol and LDN. People make sure to space out their doses by many hours. Otherwise, if you take LDN and Tramadol too close together, the Tramadol will not work. In the perfect scenerio, LDN works so well that you don’t need the Tramadol. That happens quite a bit.

  3. I’ll be watching as the trials are done for LDN. In the UK we don’t get to choose our Drs in the same way and are quite limited due to this. With fms/cfs and 4 autoimmune conditions it would be great if I could control them all with 1 low dose option. I wonder though if it also slows/stops progression of autoimmune diseases?

  4. After reading your first article about LDN, I’ve been looking into it further. There are no LDN prescribers in my area, but I’m going to talk to my doctor about it, and see where he is on the subject. This is an interesting interview, informative, and now I’m eager to get the book.

    Thank you for sharing this interview at Chronic Friday Linkup! I pinned this to the linkup board and shared it to my FB page.

  5. Carol says:

    I take LDN for CRPS/RSD complex regional pain syndrome with dysautonomia. It has helped lessen the severity of the neuropathy flare ups an has helped the most with the dysautonomia (malfunction of autonomic nervous system)symptoms like; the body weakness, exercise intolerance, the heart palpitations and I think has even helped to regulate my blood pressure. I have gotten off all other drugs. I use alternative therapies and LDN. I have been on it for 1 year. It is a miracle for me because I have adverse allergic reactions to most narcotics and pain meds so this was an answer to my prayers.

  6. A very informative post, thank you for sharing. I certainly learned a lot from this.

  7. Genie says:

    I take a low dose of Gabapentin and alternate a muscle relaxer and melatonin. I take them at night for sleep. Separately they dont help me sleep but will together. Do you think LDN along with the outgrew two pills I am taking will help me sleep?

    • Donna Gregory/FedUpwithFatigue.com says:

      LDN does help some people with better sleep. It can cause sleep disturbance/vivid dreams early on, but those side effects usually go away after a couple of weeks.

  8. I’m on lyrica and cymbalta. Would I be able to stop taking them off I had good results with LDN?

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, I’ve heard a number of people have been able to get off of other prescription drugs, including opioids, after they were on LDN for a while.

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