The LDN Book: How a Little-Known Generic Drug — Low Dose Naltrexone — Could Revolutionize Treatment for Autoimmune Diseases, Cancer, Autism, Depression, and More

Praise for The LDN Book

"As a practicing physician who has used LDN as a cornerstone therapy for over fifteen years, I can say without equivocation that LDN is the most important and successful medicine I have ever used. I often joke that if not for LDN I couldn’t pay my mortgage; I’ve had so many new patients referred to me by someone whose life has improved dramatically through the use of LDN. And despite my knowledge and experience with LDN, I’ve learned a great deal from The LDN Book—aspects of its basic science I hadn’t known, new uses, and how its uses can inform us about the causes of various diseases. This is a wonderful book for any patient with an autoimmune disease, cancer, depression, or a host of other conditions and is a must-read for any physician whose goal is to help their patients."

—Dr. Thomas Cowan, author of The Fourfold Path to Healing; coauthor of The Nourishing Traditions Book of Baby & Child Care

"I first came across LDN several years ago when a medical colleague said I should look into its positive effects in patients with MS, Crohn’s disease, and other autoimmune disorders. I was so impressed with what I read that I helped submit a petition to the UK government to ask for funding for further research into this inexpensive drug. But, as with so many petitions, no progress was made. I hope The LDN Book—which presents up-to-date findings that again confirm the efficacy of this safe, cheap, generic drug in helping to control many chronic, disabling conditions—is read by those in the Department of Health and by all doctors caring for patients with autoimmune disease. In the UK, LDN has been stranded in limbo; maybe now the time has come for it to be accepted as a recognized therapy that could, at least, be tried on those suffering such long-term diseases of the immune system."

—Dr. Chris Steele, MBE, general practitioner; medical presenter on ITV’s This Morning

"Low Dose Naltrexone (LDN) was discovered by my husband and partner, Dr. Bernard Bihari. Incredibly informative and superbly written by various members of the medical profession sharing their experiences using this extraordinary drug, The LDN Book honors his legacy in helping patients suffering from autoimmune and other diseases to regain their health and their lives."

—Jacqueline Young

Copyright © 2016 by The LDN Research Trust.

All rights reserved.

All royalties from this book will go to support The LDN Research Trust.

No part of this book may be transmitted or reproduced in any form by any means without permission in writing from the publisher.

Project Manager: Alexander Bullett

Developmental Editor: Michael Metivier

Copy Editor: Deborah Heimann

Proofreader: Helen Walden

Indexer: Lee Lawton

Designer: Melissa Jacobson

Printed in the United States of America.

First printing February, 2016.

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Our Commitment to Green Publishing

Chelsea Green sees publishing as a tool for cultural change and ecological stewardship. We strive to align our book manufacturing practices with our editorial mission and to reduce the impact of our business enterprise in the environment. We print our books and catalogs on chlorine-free recycled paper, using vegetable-based inks whenever possible. This book may cost slightly more because it was printed on paper that contains recycled fiber, and we hope you’ll agree that it’s worth it. Chelsea Green is a member of the Green Press Initiative (www.greenpressinitiative.org), a nonprofit coalition of publishers, manufacturers, and authors working to protect the world’s endangered forests and conserve natural resources. The LDN Book was printed on paper supplied by Thomson-Shore that contains 100% postconsumer recycled fiber.

Library of Congress Cataloging-in-Publication Data

Names: Elsegood, Linda, 1956- , editor.

Title: The LDN book : how a little-known generic drug, low dose naltrexone, could revolutionize treatment for autoimmune diseases, cancer, autism, depression, and more / edited by Linda Elsegood.

Other titles: Low dose naltrexone book

Description: White River Junction, Vermont : Chelsea Green Publishing, [2016]

   | Includes bibliographical references and index.

Identifiers: LCCN 2015041133| ISBN 9781603586641 (pbk.) | ISBN 9781603586658 (ebook)

Subjects: | MESH: Naltrexone—therapeutic use. | Dose-Response Relationship, Drug. | Naltrexone—pharmacology. | Narcotic Antagonists—therapeutic use. | Opioid Peptides—metabolism.

Classification: LCC RM328 | NLM QV 89 | DDC 615.1/9—dc23

LC record available at http://lccn.loc.gov/2015041133

Chelsea Green Publishing

85 North Main Street, Suite 120

White River Junction, VT 05001

(802) 295-6300

www.chelseagreen.com

To my late father,

who believed I could achieve anything if I tried hard enough. Dad, thank you for always supporting me, and for making me the person I am today!

Contents

Praise for The LDN Book

Preface

Introduction

Chapter One: The History and Pharmacology of LDN by J. Stephen Dickson

Chapter Two: Multiple Sclerosis and Lupus by Deanna Windham

Chapter Three: Inflammatory Bowel Disease by Jill P. Smith and Leonard B. Weinstock

Chapter Four: Chronic Fatigue Syndrome and Fibromyalgia by Kent Holtorf

Chapter Five: Thyroid Disorders by Kent Holtorf

Chapter Six: Restless Legs Syndrome by Leonard B. Weinstock and Trisha L. Myers

Chapter Seven: Depression by Mark Shukhman and Rebecca Shukhman

Chapter Eight: Autism Spectrum Disorder by Brian D. Udell

Chapter Nine: Cancer by Angus G. Dalgleish with Wai M. Liu

Acknowledgments

Appendix A Starting the Conversation by Mark H. Mandel

Appendix B Frequently Asked Questions about LDN by Skip Lenz with Julia Schopick

Notes

Contributors

About the Editor

Preface

As the founder of the LDN Research Trust, I have been in contact with thousands of people from around the world suffering from a multitude of diseases and afflictions. I’ve also witnessed, through their testimonies, how low dose naltrexone (LDN) has helped ease their symptoms and enabled them to live more enjoyable lives.

My own LDN story began in 1969, when at the age of thirteen I contracted glandular fever, also known as mono. I was seriously ill and away from school for six months. After that, strange things started to happen: trapped nerves here and there, slipped discs; my life seemed to become a never-ending series of health travails.

But things really took a turn for the worse when, in December of 1999, my mother suffered a serious heart attack, the trauma of which affected me badly. I was working full time, commuting two and a half hours to work every day, visiting and caring for my mother and father and, on top of it all, running the family home. I was constantly fatigued.

The following January I came down with a bad flu that kept me home from work for two weeks, and it was followed by a case of gastroenteritis. My immune system was compromised, so it took me at least three additional weeks to recover. This bout of ill health continued when I apparently slipped a disc, causing pins and needles sensations in my right leg. My energy levels were continuing to fall rapidly, I was finding it difficult to cope, and I had to sleep constantly.

At around Easter of that year I decided I had to break this cycle. I took a week off from work and, with my younger daughter, Laura, went to Portugal with the hope that I would start feeling better. Ominously, the day before we left, the left side of my tongue felt burned, as if I’d eaten hot melted cheese, even though I could not remember eating anything like that. Sadly, our vacation sun was nowhere to be seen. Portugal was unbelievably wet, cold, and windy, wind that made the left side of my face numb and tingly.

Back home, I went to see my general practitioner, who thought I had a trapped nerve in my neck. He said I should see a neurologist. However, the earliest available appointment was not for another four months. When the appointment came, my neurologist debated whether I had either had a mild stroke, contracted a foreign disease, developed a brain tumor, or developed multiple sclerosis. Which diagnosis was I meant to hope for? I just wanted him to give me a pill and send me on my way.

Things got worse over the next few weeks. I frequently lost my balance, and the left side of my face, head, tongue, and nose became completely numb with the now familiar feeling of pins and needles. When trying to stand up I either fainted or fell over. Every day I seemed to lose some ability, starting with the hearing in my left ear. The pains and fog in my head were terrible, and I started having double vision. I slept twenty hours a day, which was the only saving grace, as when I was asleep I felt nothing.

My doctor prescribed a three-day course of intravenous (IV) steroids; however, these did nothing to help. The steroids caused my face to balloon until I didn’t recognize myself anymore; I was flushed red and looked like a beach ball! I then had an MRI scan, a lumbar puncture, and twenty-eight blood tests. I developed optic neuritis, which was incredibly painful. It was at this point that it was feared I might lose my sight and hearing. Six weeks later, I was given another course of IV steroids and began to feel a little better. Multiple sclerosis (MS) was then diagnosed.

I spent the next year mainly in bed. I was having an attack, or exacerbation, every six months or so. It took months to get over one attack only to have another. I now had no balance and had to furniture walk. I also suffered from vertigo; if I turned my head too quickly everything would spin. I would stumble over nothing, and my legs behaved like rubber bands. More often than not, I ended up on the floor.

At times I had so much pain in my head that I felt nauseous. Because the pain moved around from one part of my head to another, I often felt as if the doctors didn’t believe me. They prescribed strong painkillers, which didn’t take the pain away completely but at least made it more bearable, though they also caused extreme nausea.

English became like a second language. Words that once seemed so simple were now lost to me. My sentences were confused and nonsensical. I had to speak very slowly in order to select and arrange the right words, and it made me sound as if I’d had a stroke. It was such a tiring effort, and although I still believed I spoke sense, to others it was just a jumble.

The worst part came when I lost control of my bladder and bowels. I can only describe it as similar to sneezing; I had no control, so when the feeling came it would happen straight away. I couldn’t leave the house anymore. I started to use a wheelchair more and more often and even bought an electric scooter. The toilet and the bed became my best friends!

In September of 2003 my elder daughter, Sara, got married, and I doubted whether I could even attend the ceremony. After getting showered and dressed, I had so little energy left that all I wanted to do was go back to bed. Though I struggled, I managed to get there, but I came home as soon as I could, which was hard on our entire family. By October I was falling to pieces, always in the hospital seeing a urologist, gynecologist, or gastroenterologist. At the end of the month, my neurologist said he thought I had progressed from the relapsing and remitting form of MS to secondary progressive. He leaned across the desk and shook my hand before opening the door and saying There’s nothing more that can be done for you. He then showed me out without any plan B. I felt very alone and frightened.

It was after a routine visit from the doctor delivering my painkillers that I reached the end. The helpless look in his eye, which I had seen so many times from others, reduced me to making an extreme decision: I had the tablets and the glass of water he’d left me in my hand, and my husband was at work. I thought that my family would eventually understand, and that they would be able to get on with their lives without me. I felt that I could no longer achieve anything, that I was a failure. It was only when I thought of my fifteen-year-old daughter finding me that I realized I couldn’t do that to her. But I also realized that if I was going to remain in this world, I needed to do something different in order to live again.

In between my many bathroom visits I used the computer to research how other people were successfully managing their MS. I knew that I couldn’t be the only one out there who was suffering like this. I couldn’t be that unique. I read a lot about LDN and spoke to people who were taking it. Although I was worried about taking yet another drug, the people who shared their experiences with it calmly stated that if it wasn’t going to do any good, then it certainly wasn’t going to do any harm. I stopped taking the Rebif and Provigil I was prescribed and started a special diet plus a regime of vitamins and supplements. I discussed LDN with my general practitioner, but after speaking with the partners of the surgery, she said could not prescribe it for me. However, she did agree to monitor me if I found a doctor who would.

In early December I started LDN, thanks to Dr. Bob Lawrence, and the results were amazing. After only three weeks, the awful fog I’d been living with for so long finally lifted, and my liver tests were returning to normal. My brain had felt like an old, out of tune television set, but no more. I could think clearly again, and I was talking coherently. I went from having my fifteen-year-old daughter feed, clothe, and bathe me to being able to take her a glass of orange juice when she asked. The caretaking roles were finally reverting back to their natural positions. I carried on improving for the next eighteen months. By Christmas of 2004 I was fully functioning again, and my liver tests were back to normal. I felt like me. Okay, a me with MS, but that didn’t matter.

Now I had to decide, should I simply consider myself to be lucky, or tell other people about my experiences? Of course, I chose to let others know about LDN, and became the founder of the LDN Research Trust, which was established in the United Kingdom as a registered charity in 2004. It is the most exciting thing I have ever done. Having regained my strength and faculties, I am able to devote many hours a week to the Trust, helping people to get LDN prescribed and raising funds and awareness to get it into clinical trials.

The LDN Research Trust is a charity that is run solely by volunteers. Our only payment is the amazing stories of success, which I receive daily from users of LDN, telling us how they have gotten their lives back. Currently the charity has over nineteen thousand members with over twelve thousand supporters (at the time of publication) on Facebook from all around the world. My day-to-day work for the charity includes responding to the numerous e-mails and phone calls I receive with requests for information and advice from both patients and health care professionals. I also produce a bimonthly newsletter that I send to subscribers, which includes LDN user stories and articles on the use of LDN by professionals. I am in contact with thousands of LDN-prescribing doctors and pharmacists around the world, with numbers growing weekly.

Additionally, I have organized a number of conferences on LDN, including one in the United Kingdom and two in the United States, with the next to be held in Orlando, Florida, in February 2016, with an anticipated four hundred delegates. This conference will be live streamed around the world.

I have also made over four hundred videos for our Vimeo channel, where listeners can hear interviews with LDN-prescribing doctors, researchers, pharmacists, and people using LDN for many conditions. These have been of great value not only to users and potential users but also to doctors, nurses, pharmacists, and other clinicians.

Finally, through the LDN Research Trust I have been involved with a number of projects aimed at raising awareness and knowledge about LDN, including the creation and development of an LDN Health Tracker App, which required working with a designer to get the App produced in line with my requirements; raising money for and organizing the production of a documentary on LDN that aired in June, 2015; and raising funds for the upcoming MS/LDN trial led by Dr. Jarred Younger.

Over the past eleven years, I’ve been asked many times to write a book on LDN, but thought What do I know about writing a book! Dr. Mark Shukhman in particular, who wrote, with the help of his daughter, Rebecca, this book’s chapter on LDN and depression, repeatedly asked me, So when are you going to write this LDN book? Needless to say, working on The LDN Book has been one of the most interesting challenges I have undertaken, and one in which Dr. Shukhman was more than happy to participate. I have managed, as the Beatles would have said, with a little help from my friends.

There have been a few wonderful LDN books written in the past; however, I felt that with all of the latest research, trials, and studies that have happened since they were published, the wealth of updated information contained in this book would be of benefit not only for medical professionals, but for people like myself wishing to learn more about the drug.

There need to be more double-blind, placebo-controlled trials on LDN. This book presents a way to raise awareness and hopefully encourage people to give generously to help fund further research that would be of great benefit to millions of sick people around the world who are suffering from over 180 conditions (and the list grows longer every year) for which LDN may be of help.

For me, it is thanks to LDN that I have a life again, as well as hope for the future. I’ve now used LDN for over twelve years. Although I have a progressive disease, I can say with confidence that it has shown no sign of progression. My head is clear, my energy levels are up, and I have greater muscle strength.

LDN is not a miracle drug, and it doesn’t necessarily work for everyone, but it’s something to try. If others find themselves in the deep, dark place I was in, and perhaps don’t feel they have the strength to carry on, I want them to know there may be a way forward. If this book can help change just one life for the better, I will see it as a success. Life should be for living, not just surviving!

Linda Elsegood

Founder, The LDN Research Trust

Introduction

I don’t remember the exact moment when I first decided to become a doctor (I have been practicing general internal medicine now for many years and have had my own solo practice for the last ten). My cousin tells me that it was my mother’s idea. My paternal grandfather was a doctor of internal medicine, and maybe my mother thought it would be nice if I continued the family tradition. Regardless, I received a brand new shiny black stethoscope as a present when I was in first grade. I remember being very excited because it really worked. I would listen to the heart of anyone who would let me. I also remember writing my first essay on why I wanted to become a doctor. My reason was simple: I wanted to help people. Over the past several years, however, I have thought about walking away from medicine many times. In fact, I was sure that I was done before I found out about low dose naltrexone (LDN).

When I was in medical school, I discovered that indeed most of us were there because we wanted to help people, even though I’d been told in response to my essay that, no matter what, one should never write that down as the reason. It was too common of an answer, indicating too much emotion and not enough reason. My peers and I were all focused on patients, studying hard and memorizing all kinds of strange facts, so that if we ever encountered a patient who had a very unusual illness, we would know just what to do. Yet several years into practice, I found that my days were filled with insurance paperwork, phone calls, chart reviews, and a stack of unfinished progress notes that would take me long past sunset every day to complete. I was spending more time at the computer than with patients.

Despite all of this, I can tell you that if I thought I was making a difference in anyone’s life or truly helping them get better, it would all have been worth it. But that was not the case. My schedule was filled with patients who had chronic disease and who never got better. Every time they came in they needed more medications. Their numbers never got better, their illnesses never improved, and they never felt better. I know that I have patients who have been with me since the beginning who will argue with me about this, but it’s true.

This all changed when I found LDN. At first I was very doubtful, and I wrote my first prescription at the insistence of my seventy-year old patient Marla, who had learned all about LDN from the Internet (doctors generally dread patients who bring in information printed off the Internet; they are second only to patients who happen to have a nurse in the family). When Marla’s symptoms improved, I thought it was interesting, but I was too busy with my paperwork to actually delve deeper into LDN. I knew it was being used as an alternative medicine to treat multiple sclerosis (MS), and at the time none of my patients had that illness.

Then, years later, I met Christian. At thirty-two, he was the youngest male patient I had with a serious illness. Doctor Jill, I’ve done the research on LDN, and I want to try it out for my symptoms, he said. Christian had an episode of what was basically optic neuritis presenting as double vision. Both his