The LDN Book

PREFACE
s 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. Ive 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 Id 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.
The LDN Book
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 didnt 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 didnt believe me. They prescribed strong painkillers, which
didnt 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,
Preface
xi
and it made me sound as if Id 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 couldnt 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 Theres 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 hed 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 couldnt
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 couldnt be
the only one out there who was suffering like this. I couldnt 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 wasnt going to do any good, then
it certainly wasnt 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
xii
The LDN Book
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 Id 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 didnt 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.
Preface
xiii
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, Ive 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 books 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. Ive 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.
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The LDN Book
LDN is not a miracle drug, and it doesnt necessarily work for everyone,
but its something to try. If others find themselves in the deep, dark place
I was in, and perhaps dont 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

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PREFACE

Back home, I went to see my general practitioner, who thought I had a

The LDN Book

The LDN Book

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