Copyright © 2016 Nyema Hermiston RN ND Adv Dip Hom.

Michael Cowdroy of Duoz Media for the graphics/art for the book.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for health and well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

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ISBN: 978-1-5043-0065-0 (sc)

ISBN: 978-1-5043-0066-7 (e)

Balboa Press rev. date: 05/31/2016

Contents

Foreword

Introduction

About The Interviews

The Stories

Charlie Abrahams – Childhood Epilepsy

Elaine Bakos – Fibromyalgia

Shamus And Kaitlynn Baldwin – Autistic Spectrum Disorder

Tom Balk – Hepatitis C

Janet Balk– Hepatitis C

Paula Bambic – Breast Cancer

Mary Jo Bean– Liver Cirrhosis

Fairlie Bekker – Allergies,

Beata Bishop – Melanoma

Melissa Cabral – Clostridium Difficile

‘Sophia’ – Lyme Disease

Sarah Ann Cooper – Pancreatic Cancer

David Emerson – Multiple Myeloma

Wanda Flick – Breast Cancer

Philip Flournoy – Prostate Cancer

Joyce Forsythe – Lymphoma

Judith Hansen – Scleroderma

John Hobbs – Rheumatoid Arthritis

Gabrielle Hogg – Asperger’s Syndrome

Joel Hooker – Attention Deficit And Hyperactivity Disorder

Glenn Hopkins – Diabetes, Heart Disease

Kirsten Horner – Enthesitis

Michael Hurst – Ulcerative Colitis

Tina Jackson – Crushed Cervical Vertebrae With Chronic Arm Pain

Genevieve – Crohn’s Disease

Bud Lindley – Lymphoma

Lexie Lindstrom – Parkinson’s Disease

Butch M – Motor Neurone Disease/Lou Gehrig’s Disease/Amyotrophic Lateral Sclerosis

Ryan Middleton – Sleep And Behavioural Disorder

Crystal Nason – Multiple Sclerosis

Steve Newport – Alzheimer’s Disease

Raphaela Savino – Ovarian Cancer

John Scott – Multiple Allergies, Crohn’s Disease, Chronic Fatigue Syndrome

Mary Jo Siegel – Non-Hodgkin’s Lymphoma

Debra Surman – Asthma

Arlene Van Straten – Pancreatic Cancer

Alice And Annie Walker – Autistic Spectrum Disorder

Emily Wall – Epilepsy

‘Dawn’ – Rheumatoid Arthritis, Multiple Sclerosis

Marc Wishengrad – Methicillin Resistant Staphylococcus Aureus (Mrsa)

David Yoffie – Pancreatic Cancer

Afterword

Glossary Of Terms

Resources

Acknowledgements

About The Author

To my late friends and colleagues,

Patricia Janssen and John Maitland

The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honours the servant and has forgotten the gift.

We will not solve the problems of the world from the same level of thinking we were at when we created them.

More than anything else this new century demands new thinking. We must change our materially based analyses of the world around us to include broader, more multidimensional perspectives.

– Albert Einstein

FOREWORD

Doctor Ian Gawler

OAM, BVSc, MCounsHS

Good News for People with Bad News tells the truth of people’s experiences – people who chose less well-known therapies in response to their serious illnesses, and flourished! It is a wonderfully provocative book that opens up many new possibilities for people faced with a health crisis.

In Tibet, there is a traditional saying: An old patient is more useful than a new doctor. This is not to be unkind to doctors, or to the medicine of our day. Both have so many good things on offer. No, what is being spoken of here is the power of free-thinking and the power of shared experience.

So many people who tell their stories in Good News for People with Bad News would happily have taken a standard treatment for their condition – if there had been one available. However, united by their poor prognoses, what they have in common is a capacity to think freely, a willingness to seek other options and the perseverance to keep looking until they did find something that worked.

To search outside orthodox avenues, even to think that recovery is possible when well-trained doctors say it is not, requires courage. Some might call it desperation, others might just describe it as a logical thing to do. Why not dare to dream of recovery? Why not try things that are less commonly known – provided that the risk of harm is minimal, given that very few things in life are free of any risk at all!

The reality is that there are always more possibilities than you first thought and Good News for People with Bad News provides many examples of real people who found real solutions. So if you, or someone you love, has a difficult health problem, this book is packed with inspiration and fresh ideas. In fact, this book is overloaded with good ideas! People recount finding solutions through many different therapies and if it is a simple solution you are after, it may be hard to find here.

What comes through clearly is the capacity of the human mind and spirit to investigate, assess new information, make good choices, persevere and triumph. Here lies the real message of this important book: never give up!

My wish is that Good News for People with Bad News does help many more people to find the answers they need. My sense is that it will!

Doctor Ian Gawler OAM, BVSc, MCounsHS www.iangawler.com

Yarra Junction, Australia July 2014

Doctor Ian Gawler has played a major role in pioneering and popularising meditation and other mind-body techniques in the Western world. Doctor Gawler, himself a long-term cancer survivor, co-founded the world’s first lifestyle-based cancer and multiple sclerosis self-help groups and convened Australia’s first Mind-Body Medicine conference. Ian is a regular blogger and has authored six bestselling books including You Can Conquer Cancer, Meditation – An In-depth Guide and The Mind that Changes Everything.

A powerful advocate of a healthy lifestyle, Doctor Gawler has appeared widely in the media and presented at many major conferences. He has a gift for combining his years of experience with ancient wisdom and scientific research into a modern, practical context.

Doctor Gawler was awarded the Order of Australia Medal for his services to the community in 1987. His biography, The Dragon’s Blessing, was written by Guy Allenby in 2008.

INTRODUCTION

Orthodox medicine has given us much to be grateful for. Last century, public health underwent a revolution of infection control with improved sanitation, hygiene, vaccination programmes and antibiotic therapy that saved countless lives. Those of us who live in a country with a modern public health system benefit from medical care from the day we are born. We all know of a loved one whose life was saved by quality medical treatment. Few would argue the benefits of easy access to health care, hospital services, screening to detect disease, infection control and public health education. When we get sick, we expect to go to our doctor, receive treatment and recover.

But what happens when the treatment you receive does not work, or there is no treatment available and you are left facing a debilitating disease or a shortened life? Your doctor has sagely shaken his or her head and told you there is no other treatment available for your condition. You are offered palliative treatment to manage your condition and help you enjoy your life as best you can. You do not think about using any other therapies because your doctor has assured you that every possible treatment has been tried.

How some people have responded to this situation is the focus of this book.

The Stories

Here, forty-one people, including parents, describe how they did not accept their bleak medical outlook. Instead, they became determined to seek out treatments that would help them recover and lead them back to a normal life. The therapies they use vary from dietary regimes and intense nutritional therapy, to little-known medical innovations. These people feel that their stories are worthy of sharing, so that others might benefit from their experience.

Many report that even though orthodox medicine offered them no help, the alternative treatment they considered using was dismissed as unscientific, with a general attitude of: Because there’s nothing we can do to help you, no one else will be able to help you either.

Despite being as real as you or I, recovery stories like those here are routinely regarded as ‘anecdotal’ and therefore dismissed as unreliable data. But anyone willing to look, will see that the treatments have been researched. Some have the status of being ‘scientifically proven’ and have achieved successful treatment outcomes for almost one hundred years.

These are not isolated cases of recovery; they represent growing numbers of people who are making their own choices about the type of treatment they use, yet many of these treatments remain obscure to most people.

In the process of listening to over 50 patient stories, 43 of which appear here, it became apparent that the therapies used were a small selection from a myriad of alternative therapies available today for most illnesses, making orthodox treatment just one treatment option among many.

My aim is to shed light on therapies available to treat diseases that are believed to be incurable and therefore untreatable. The people interviewed here challenge that belief.

Awareness

There is an inexplicable lack of awareness of alternative therapies amongst medical personnel. Even when a therapy is a medical innovation, doctors are generally unaware of it, due to the misguided notion of: If medical orthodoxy doesn’t know about it, it lacks validity and we need to test it first. However the data on unconventional medical therapies is often published in medical journals, but ignored. Because of this biased approach, the public are being asked to believe that there is only one viable form of treatment: that of mainstream medical science. By its very claim, this is unscientific.

Presented here are patients who have unexpectedly survived after using an alternative treatment, sometimes engendering anger from their doctor, along with dismissal, that their recovery was spontaneous or due to the ‘placebo’ effect – although they obviously did not succumb to the placebo effect from any medical treatment they had already received.

Science

By definition, the scientific approach¹ is to consider all possibilities before reaching a conclusion. Science is an unbiased systematic investigation into a field of study that is organised into a body of knowledge – knowledge gained by the people using and observing that system.

When the unexpected happens and a patient recovers from an alternative treatment, where is the openness and curiosity one would expect from the scientific community? In many cases, the doctors who criticise a non-orthodox therapy have had no direct experience of that therapy.

When alternative treatment methods are successfully used for patients with ‘incurable’ conditions, they are routinely ignored or ridiculed out of hand, rather than being viewed as a potentially helpful therapy. Without proper investigation, resolutely ignoring valuable evidence indicates we are living more in a world of ‘consensus science’, rather than a truly scientific one.

Little appears to have changed throughout history. In the 19th century, Hungarian physician Ignaz Semmelweis discovered that the puerperal fever² mortality rate could be drastically reduced by thorough hand washing in obstetric clinics. Despite evidence that this reduced deaths to below one per cent, Semmelweis’s discovery was rejected by the medical community, offended by the implication that they should wash their hands before delivering babies. Years after Semmelweis’s death in 1847, hand washing before surgical procedures earned widespread acceptance.

We know that thousands of sailors on British shipping expeditions died of scurvy caused by a lack of vitamin C, but it took 40 years and many more deaths for the British admiralty to be convinced by ship surgeon James Lind’s suggestion to provide lemon juice for sailors after his ‘Treatise of the Scurvy’ in 1753. It wasn’t until the 1790s that citrus juice for sailors was finally carried onboard sailing ships.

Russian microbiologist Ilya Mechnikov discovered cellular immunity in 1882, for which he encountered considerable hostility, but eventually won a Nobel prize with Paul Erlich in 1908³ for the discovery of phagocytosis.⁴ Mechnikov recognised the importance of gut bacteria. In 1907, he discovered a relationship between health and the make-up of gut bacteria, and suggested senility could be delayed by manipulating gut bacteria with the lactic acid-producing bacteria found in yogurt. Popular for a time, the idea was eventually disregarded, then re-emerged in the 1990s, almost one hundred years later.⁵ Probiotics are gaining increasing recognition for their role in resolving chronic gut problems such as Irritable Bowel Syndrome, inflammatory bowel disease and childhood allergies.⁶ They are now a popular over-the-counter supplement, receiving intense medical attention and are a multi-billion dollar industry globally. Gut bacteria are a key element in three of the recovery stories.

History is littered with stories of medical discoveries and beneficial treatments dismissed out of hand at one time, then to be accepted decades later – and it’s still happening.

In 1977, Stanislaw Burzynski, MD PhD, pioneered biologically active peptides called antineoplastons for the treatment of cancer. In 1984 he founded the Burzynski Research Institute (BRI) in Houston Texas, USA. Antineoplastons have been responsible for curing terminal cancer, including aggressive brain cancers for which there is no medical cure. Rather than drawing positive attention from the medical world, the BRI has spent many years dealing with with court cases against it, having been repeatedly hounded by the FDA.⁷ Two compelling documentaries have been made recounting these events.⁸

At the Kurume University in Fukuoka, Japan, Japanese pathologists, oncologists and surgeons conducted independent studies of antineoplastons.⁹ They concluded: After twenty-seven years of independently testing antineoplastons – including randomised clinical trials, we found that Doctor Burzynski was right. It’s obviously not ‘anecdotal’ anymore.

The future of antineoplaston therapy for cancer patients remains uncertain, while criticism of antineoplastons abounds – and of Doctor Stanislaw Burzynski.

In the process of seeking people to interview, a number of doctors who use alternative therapies were not prepared to go public, for fear of attracting the wrong kind of attention. Integrative medicine, where doctors practise both orthodox and non-orthodox medicine, is a risky business.

Penicillin, the First Wonder Drug

One wonders how the case of the first patient whose life was saved with antibiotics would be viewed today. Researchers at Oxford University began developing penicillin for treatment on humans in 1939, at the outbreak of World War II.

In 1942, 33-year-old Anne Miller lay in a New Haven hospital in Connecticut, with a dangerously high temperature, dying from septicaemia,¹⁰ caused by a streptococcal infection following a miscarriage. She was treated with a tiny amount of penicillin – at the time an obscure, experimental drug. Overnight, her temperature dropped, she survived, and went on to live until she was 90 years old.¹¹ Before this life-saving treatment, only a few experiments had been conducted with penicillin in mice and people, with mixed results.

News of Mrs Miller’s miraculous recovery helped inspire the American pharmaceutical industry to begin full production of penicillin, resulting in a dramatic reduction of deaths from infection during World War II. No doctor or scientist needed evidence from a study with large numbers of patients to be compelled to use it. The medical community seized upon this ‘anecdotal’ evidence – the only way great discoveries can begin.

Antibiotic therapy heralded the beginning of life-saving drug treatment for serious bacterial infections internationally. Having achieved effective infection control with antibiotics and vaccinations, there evolved an ideology in orthodox medicine that drug therapy could effectively treat other diseases. Unfortunately, in the decades that followed, death rates from chronic diseases like cancer, cardiovascular disease and diabetes grew, and for which drug therapy has become standard practice.

Where antibiotics treat the cause of illness (the infection), drug therapy for chronic disease does not. Instead, it manages symptoms, as long as the medication is taken, leading to the practice of polypharmacy, where multiple medications for inflammation, diabetes, reflux, high blood pressure, cholesterol and insomnia are taken together, long-term, without real resolution of symptoms. This practice is compounded by pressure on doctors to either prescribe the corresponding medication or be seen as negligent, leaving many people on a growing list of drugs for the rest of their lives. To my knowledge, no scientific studies have been conducted that record the effects – positive or negative, of drug cocktails like this on patients after five, ten or fifteen years. One man’s story tells how his physician described this process as: Climbing the [medication] ladder.

Orthodox Medicine

Risks

The clear message from medical orthodoxy to their patients is not to trust treatments other than its own, due to their ‘unscientific’ status. But let’s be equally clear, by comparing the perceived risk of using alternative therapies with the actual risks of orthodox medical treatments. With just a little delving, the following comes to light:

• In the United States, adverse drug reactions (ADRs) are the fourth leading cause of death.¹²,¹³ Two million serious ADRs cause 100,000 deaths every year. As opposed to ADR’s, upwards of 210,000 patients die in US hospitals from from medical errors.¹⁴

• Adverse drug events (ADEs) are also common in the Australian health system. Anticoagulant, anti-inflammatory, and cardiovascular drug accidents, all of which are preventable, collectively make up over one half of all ADEs.¹⁵

• In Australia, medical errors lead to 18,000 deaths every year, and 50,000 people suffer a permanent injury.¹⁶ With no systematic data collection for errors, it is impossible to know the true number of medical mistakes that cause serious harm or death.

• A Chief Medical Officer in England has estimated that each year 60,000 to 255,000 National Health Service patients suffer serious disability or death as a result of health care interventions.¹⁷

• At a US Senate hearing in July 2014, Doctor Tejal Gandhi, associate professor of medicine at Harvard Medical School and president of the National Patient Safety Foundation, spoke of preventable medical errors persisting as the number three killer in the US, claiming the lives of some 400,000 people annually, which amounts to over 1,000 per day.¹⁸

Surgery and drug therapy bring with them high risk to patients, so statistics like this may be inevitable in well-meaning health care systems around the world. The two key reasons behind conducting rigorous drug trials are to establish efficacy and safety. The more dangerous the treatment, the more important it is to undergo scientific trials.

When medical accidents causing death and disability on a large scale are commonplace in orthodox health systems around the world, warnings of the dangers of alternative therapies are absurd.

Efficacy

The same question that is asked of non-orthodox therapies should also be asked of orthodox medicine: Is the therapy you are prescribing scientifically proven?

Professor John Ioannidis, a meta-researcher and one of the world’s foremost experts on the credibility of medical research, says as much as 90 per cent of published medical information doctors rely on is flawed. His paper, Why Most Published Research Findings Are False,¹⁹ was published in the Public Library of Science (PLoS) in August 2005 and in New Doctor in December 2008. It outlined the results of a detailed analysis of medical research papers and questioned the results of many of them. An article based on this paper, Lies, Damned Lies and Medical Science,²⁰ appeared in The Atlantic online magazine in October 2010. The strong implication is that an unknown number of medical treatments offered as first-line treatment may not be scientifically proven.

In December 2003, Allen Roses, the worldwide vice-president of genetics at the pharmaceutical company GlaxoSmithKline, stated that fewer than half of the patients prescribed some of the most expensive drugs actually derived any benefit from them.²¹

Medical Pioneers

Some of the therapies described have been developed by doctors who used pharmaceutical drugs in inventive ways and achieved what orthodox medicine has not.

Two examples are:

Antibiotics to Treat Rheumatoid Arthritis (RA)

Working with Albert Sabin (later of polio vaccine fame) at the Rockefeller Institute in the US just before World War II, Doctor Thomas McPherson-Brown isolated a bacteria-like agent from the joint fluid of a woman with RA and speculated that it might be the trigger for her disease. Later, Brown headed up arthritis research for the Veterans’ Administration and eventually became Dean of Medicine at George Washington University Medical School. He treated some 10,000 patients who had RA and other connective tissue diseases, using tetracycline therapy. Even during a time when excitement about antibiotics was high, McPherson-Brown’s colleagues ridiculed him and he was progressively cut off from sources of research funding. After his death in 1989, a clinical study sponsored by the National Institutes of Health in 1995, showed that Minocycline²² was safe and effective for treating RA: "We observed significant differences favouring Minocycline over placebo in the primary outcome measures."²³ Today, patients with RA and other connective tissue diseases struggle to gain access to this antibiotic, but if you are a teenager with acne, you can stroll into your doctor’s office and be prescribed Minocycline, with no questions asked.

Naltrexone to Treat Autoimmune Diseases

In 1985, Harvard-educated Doctor Bernard Bihari²⁴ was the Principal Investigator in a study funded by the Foundation for Integrative Research, at SUNY/Health Science Center at Brooklyn, on Low Dose Naltrexone (LDN)²⁵ for the Treatment of AIDS.²⁶ The impact of this and his other work on LDN, has been substantial in contributing to the successful treatment of a wide range of autoimmune diseases. As the stories reveal, a patient faced with taking highly toxic medication who is looking for a safer alternative, has to work hard to find a doctor who will agree to prescribe LDN.

Therapies like these have not been accepted or used by the broad medical community and few are familiar with them, even if they have undergone the gold standard of medicine: the double-blind trial. How come?

• What is happening when a child with epilepsy receives medication and brain surgery before trying the ketogenic diet²⁷ that has an almost one hundred year history of efficacy and has been fully described in medical journals?

• What is happening when a costly drug for pancreatic cancer that extends life for just a few weeks or months is heralded as a great advance, yet successful, nutritional treatments for pancreatic cancer (there are three of these stories)²⁸ are disregarded?

Complementary and Alternative Medicine (CAM)

For a person squarely facing a lifetime of disability or death, with no effective medical treatment available to them, it is difficult to see the harm in trying a therapy that carries no serious medical risk. It may be true alternative treatments²⁹ have not been subjected to the same rigorous testing as standard medical treatments, (although some have), but neither do they carry the inherent dangers. The treatment will either work, or it will not.

People are turning to complementary and alternative therapies because they offer another option. When patients reach a dead end with their medical treatment, they have little choice but to take matters into their own hands if they want to defy their diagnosis. Doctors are alarmed at this and feel the need to ‘warn the public’ about their patients’ errors of judgement. Implicit in this view is the assumption people are incapable of making an independent judgement about their own health care. This unhelpful approach is increasingly being rejected by people who are looking for treatments which address the cause of their illness,³⁰,³¹ leaving them with the physically and emotionally difficult task of doing their own research without their doctor’s approval.

Nevertheless, people selecting their own form of health care is becoming a more recognised option – and there is some science to it. Doctor Halsted Holman, professor at the Stanford University School of Medicine, advocates four principles of personalised and self-managed medicine that he calls: patient empowerment.³²,³³

• There is no complete cure for chronic illness unless the cause of the individual’s own disease is discovered and successfully managed.

• For effective treatment of chronic illness, an individual must engage continually in different approaches to his or her health.

• The individual knows the most about his or her own condition, the effects of certain therapies and must apply that knowledge in shaping a self-management program.

• To achieve success, the individual and the individual’s health professionals must share knowledge and divide authority.

Most CAM therapies carry little risk when used by qualified personnel. People are also discerning about how they spend their well-earned money. When a person pays for treatment out of their own pocket, they are unlikely to continue with that treatment if they do not see a benefit.

A Range of Treatment Options

No single treatment system is able to properly deal with every health issue. Some illnesses lean themselves more to certain types of therapy than others, and individuals respond better to some therapies than others. Some people are hypersensitive and unable to tolerate pharmaceutical drugs.

Rather than finding ‘the’ treatment for a single condition, what transpires in these stories is the variety of effective treatments available, so one condition can be effectively treated with any of two or three different therapies. Three people diagnosed with lymphoma here, were successfully treated with different therapies – Gerson therapy, antineoplaston therapy and Low Dose Naltrexone. There is a large number of CAM therapies for serious illness to select from, and the World Health Organisation recognises CAM as viable therapies to improve health status worldwide.³⁴ However, there are no government-sanctioned sources of this information, which leaves many patients, having received a shattering diagnosis, left to discover suitable therapies for themselves and forge their own treatment path.

Some of the available therapies are:

Medical:

• Alpha Lipoic Acid for liver disease.

• Antibiotic therapy for rheumatoid arthritis, juvenile rheumatoid arthritis, scleroderma and other connective tissue diseases.

• Antineoplaston therapy for cancers, including aggressive brain tumours.

• Faecal transplants for inflammatory bowel disease.

• Helminth Therapy for autoimmune diseases and allergies.

• Ketogenic diet for epilepsy, autism and other neurological diseases.

• Low Dose Naltrexone for autoimmune and other diseases.

• Orthomolecular medicine for a wide range of illnesses, including heart disease, diabetes and mental/emotional disorders such as autism and schizophrenia.

• SCENAR Therapy (Self Controlled Energy Neuro Adaptive Regulator) for musculo-skeletal pain and immune function.

Natural Therapies:

• Acupuncture

• Ayurvedic medicine

• Buteyko therapy

• Chiropractic

• Dietary therapy, individualised

• Herbal Medicine

• Homeopathy

• Kinesiology

• Nutrition

• Osteopathy

• Traditional Chinese Medicine

Mental, Emotional, Spiritual:

• Meditation and prayer

• Tai Chi

• Yoga

Nutrition

Perhaps the most fundamental element of a treatment plan for any disease is diet and nutrition, which play a vital role in many of the recovery stories. When patients have their nutritional status fully examined, it can reveal the potential cause of their illness. In the stories, vitamin D deficiency emerges in the cases of multiple sclerosis, Crohn’s disease and prostate cancer.

In the 1970s, Linus Pauling, the only person ever to be awarded two unshared Nobel prizes (Chemistry in 1954, Peace in 1962), published a substantial work on the benefits of vitamin C as a therapeutic intervention for a wide range of chronic illnesses, including cancer. His work on the impact of high-dose vitamin C for chronic diseases remains largely ignored by medical orthodoxy. He coined the term ‘orthomolecular’³⁵ medicine as treatment for chronic disease and some mental illnesses. Even so, nutrients are not taken seriously by the medical community as potent weapons against chronic disease. Vast bodies of work such as that of Pauling’s are overlooked, or diminished by statements like: We can thank Linus Pauling, who became obsessed with it [vitamin C] as a wondrous cure-all.³⁶

Positive media reports on nutrients are rare. A few, such as zinc for viral infections, glucosamine for joint pain and fish oils for arthritis and mental function, have passed muster. On 30th May 2014, the Orthomolecular Medicine News Service (OMNS)³⁷ announced two papers from the Journal of Orthomolecular Nutrition³⁸ had been indexed by PubMed,³⁹ but not by MEDLINE.⁴⁰ The two papers were on the topic of intravenous vitamin C in cancer therapy.⁴¹,⁴² OMNS has been publishing research from hundreds of clinical nutrition papers like these for the past 47 years,⁴³,⁴⁴ yet they remain excluded by the US National Library of Medicine, the world’s largest taxpayer-funded medical library.

When it comes to scientifically verified treatments, nutrition just doesn’t count, but in the stories of autism and childhood epilepsy, parents did their own research and gave their children special diets and supplements. After years of intensive treatment, these children recovered from the illnesses their parents had been told were incurable. One young child was successfully cured of severe epilepsy after using the ketogenic diet.

Some parents are not prepared to wait ten or twenty years for scientific validation of a harmless dietary therapy. They can and do successfully use dietary regimes guided by nutritionists, naturopaths and integrative doctors to treat their children for autism, epilepsy and other ‘untreatable’ conditions.

As free online access to academic journals worldwide becomes more commonplace, people can educate themselves about their treatment.

Challenging CAM

As more people all over the world move towards using CAM, others are trying to discredit it. In Australia, the organisation ‘Friends of Science in Medicine’ is actively lobbying universities nationwide to remove all tertiary courses on CAM until adequate scientific investigation is done. Internationally, health authorities are restricting the use of nutritional supplements by non-medical personnel on the grounds their efficacy has not been established.⁴⁵,⁴⁶

This approach is not in line with the trend of public opinion. Increasing numbers of the public are choosing to pay for their own health care using CAM therapies.⁴⁷ In 2000, Australians spent AU$2.3 billion on complementary medicines – more than four times patients’ contributions for all pharmaceutical medications.⁴⁸ A nationwide US government survey in 2009 revealed adults spent US$33.9 billion on visits to CAM practitioners and CAM products.⁴⁹

However, the opinions and judgements of the consumers of health care are being overruled by orthodox medicine, which, despite practising in a world where medical misadventure is commonplace, is compelled to control the practice of safer, milder and more effective options. Patients are encouraged to remain in the medical tunnel of drugs and surgery, even if they are not benefitting from these treatments. They are cautioned that outside this tunnel is dangerous, uncharted territory.

Ethics

When the best hope offered is no hope, and a patient is discouraged from seeking an alternative treatment of quackery,⁵⁰ the issue becomes an ethical one. While it is unethical to treat patients with sham therapies and offer hope where there is none, it is equally unethical to discourage patients from using potentially beneficial therapies when their medical options are nil.

Researchers find themselves amidst a vicious cycle struggling to have studies on CAM published, leaving the medical community and the public alike, unaware of the benefits of these therapies. When successful treatment outcomes of CAM therapies are not recorded, they remain excluded from medical literature, leaving an inaccurate picture of treatment possibilities for consumers.

A double standard exists regarding patient safety. Despite the tens of thousands of deaths in many countries from medical treatment each and every year, the public is expected to take pharmaceutical drugs without question, based on their ‘scientific status’, while also being warned against nutritional and other supplements. Deaths on record from CAM are rare,⁵¹ yet a constant stream of warnings about simple nutrients persist, like: vitamin A can cause cancer, herbs are dangerous, diets are unproven. The risks associated with orthodox medicine are accepted, so it is not newsworthy that thousands of people around the world die every day from the effects of their medical treatment. But if a patient dies as a result of using CAM, it is seen as a travesty and makes international headlines. It seems it’s okay to die if you take what your doctor prescribes you, but if you use CAM therapies, it is not.

The Future

Most people want to go to a doctor for their health care, but if there is no medical treatment on offer, the internet may be the next stop. There, they can find large communities of people who are sharing their experiences of successful treatments and supporting each other. It is a thriving community health network which has a lot to offer. A strong theme in these stories is when patients find out what others are doing, it helps them to make informed decisions, gives them control and helps take away their fear.

It may not be ideal from a medical perspective, but until practitioners become as well informed as their patients, this trend of ‘medicine via social media’ will continue, because the internet is a real game-changer. As testified, several people found treatments on the internet – not from their doctors, and that discovery saved their lives. Not all medical information will be reliable, but it is a forum for all to share freely. One woman says of the internet: You might get a lot of nonsense, but there’s a whole wealth of information there.

Integrative medicine (IM) is another growing trend. Doctors who practice IM are in high demand, because they offer their patients more treatment options and are willing to work with other health professionals. It is a model that must be far more satisfying for doctors, than grimly adhering to treatment protocols that they know will never help their patients recover, yet make routine prescriptions for fear of legal action if they do not. When patients have access to IM doctors, it alleviates their angst of having to choose between standard medical practice and CAM therapies.

I hope more doctors will come to familiarise themselves with CAM therapies, or refer their patients to nutritionists, naturopaths, acupuncturists, etc. If they do not, their patients will increasingly ‘practitioner shop’ until they find someone who will. When a practitioner has reached his or her limits of treatment possibility for their patient, it is professional and ethical to refer to another practitioner, and it shows respect to patients. When referring becomes common practice between doctors and CAM practitioners, patients can only benefit from being exposed to more treatment options. As one of these stories ends: If people worked together, an awful lot would get done.

Surely it would be more satisfying for practitioners of all persuasions to share their knowledge and experience with each other. There is no need for the ‘orthodox medicine is best and everything else is unproven’ mentality. It would make sense if CAM therapists and doctors worked together to find the best treatment for their patients, instead of arguing their case in journals and the media. Understanding which patients are recovering, and why, is key.

Sick people are our greatest teachers. Their illnesses signal what’s happening in the community. I can remember how, when the number of allergy sufferers coming into my practice really started increasing, it was a great stimulus to learn more about allergies – and quickly.

Patients are also a great resource-army of seekers and searchers. They have the motivation to learn and share what they have discovered. It was a patient who informed me about chemo-sensitivity tests for cancer,⁵² where a patient’s blood is tested to find out which chemotherapy drug their particular type of cancer is the most sensitive to. From a sometimes urgent need, patients are their own best advocates, and it seems that it is they who are driving the increased awareness of available therapies. They discover forgotten medical pioneers, discarded yet valuable research, and therapies of value. Practitioners have a lot to learn from patients.

It is my hope these stories give confidence to others to find their own way to health, and to broaden their practitioners’ experiences. The future holds great promise for people finding an individualised solution for their illness, to achieve recoveries like those described here. If current trends continue, this will increasingly be achieved through integrative doctors, CAM practitioners and online patient forums.

When one considers the vast resources of science and medicine, it is a cruel irony that people with serious illness are often left to make life-changing decisions regarding their health care, alone.

ABOUT THE INTERVIEWS

The 41 live interviews of 43 people were conducted between October 2012 and May 2014, by Skype, phone and in person, with people from Australia, Canada, England, Mexico, New Zealand and USA. Most have allowed their full names to be used, others have chosen to use their first name or a pseudonym.

The prime motive for these people to share the personal experiences of their recoveries, is simply to help other people who are currently in a similar position they were once in. They have told their stories in the hope others may find the confidence to select the best possible treatment for themselves.

Without exception, they displayed a generosity of spirit, for which I thank them on behalf of the many people who will inevitably benefit from their knowledge, understanding and experience.

Charlie Abrahams, 21 years

Santa Monica, California, USA

Diagnosed with epilepsy at one year

Interview with Jim Abrahams, Charlie’s father

On his first birthday, Charlie started having seizures. At first they were very subtle, but they quickly escalated into much more dramatic seizures, so Nancy and I started taking him to doctors. We felt fortunate, because we had access to several of the leading paediatric neurologists in the United States, and Charlie had seizures in all of their arms. They were in total agreement about what to do. They all said that as treatment options you can give these kids drugs and you can do brain surgery. They ran through every available drug on Charlie, with all the attending side effects of constipation, sleeplessness, or drowsiness. At one point, he was sleeping 18 hours a day – he sort of became a zombie. There was a rash for a while. They used the drugs in combination with each other too, and nothing stopped his seizures; nothing ever stopped his seizures. He got sicker and sicker, and was having dozens of seizures a day. So then they recommended a brain operation, which was a hideous experience. That didn’t stop his seizures either; about a day after he got out of the hospital from the surgery, the seizures returned. We were told by the last doctor we saw, that if the surgery didn’t work, to expect a life of continued seizures and what they called ‘progressive retardation’.

So I started doing research; this is back in 1993 now. Not with any thought of finding a cure for him, or even to improve his health. It wasn’t to find any alternate therapy for him. You know, while watching this going on and participating in this devastating diagnosis, it was to try to figure out – how do these kids make it through life? What happens? And how do their families make it through life?

I started doing some research – and trust me, I’m not much of a researcher, but if you go to a medical library and you start looking up paediatric epilepsy, you come across the ketogenic diet. It’s in all the texts, going back to 1921, when it was invented at the Mayo Clinic in the United States. All the way back from the 1920s through to 1992 at the time, there was anecdotal evidence published by different doctors at different hospitals, saying that the ketogenic diet improved more than half the kids that went on it. A significant percentage, 20 to 30 per cent, were cured, which is kind of an outstanding thing to come across, especially when your kid’s been beat up like that. The last study I came across had actually been published in 1992, and I was doing my research in 1993. The 1992 study was published in Epilepsia, which is the premier epilepsy medical journal, I think worldwide, certainly in the United States. In that study, written by the folks at Johns Hopkins Hospital, they said they had tried the ketogenic diet on 58 consecutive kids with really bad epilepsy – multiple daily seizures, multiple drugs and all that stuff. Of those 58 kids, 29 per cent achieved complete seizure control, and another 30 per cent were significantly improved, with fewer seizures and fewer drugs. But none of these world-class neurologists we had taken Charlie to see ever mentioned a syllable about the ketogenic diet to us, yet their premier journal had this published, just the year before, as well as all the evidence going back to the 1920s.

So I called up the guy from Johns Hopkins who had written the article, the 1992 study, and he said: Send me Charlie’s medical records, bring Charlie, and we’ll try the diet with him. Nancy, Charlie and I flew across the country from Los Angeles on the West Coast to Baltimore on the East Coast. Johns Hopkins had the benefit of having a dietician on the staff who was very conversant in the ketogenic diet, because she was around during it’s heyday; Mrs Kelly – she’s kind of an angel. So she put Charlie on the diet. At the time, Charlie was having dozens and sometimes as many as a hundred seizures a day. In two days, the seizures were gone. Even though I’ve told this story hundreds of times, I still get choked up when I tell it.

When Charlie started the diet, he was on four medications. Within a month of starting the diet, they took him off all the medicine. He was drug-free and seizure-free. He was on the diet for five years, and he was cured. He’s never taken another pill, he eats anything he wants, and just lives a normal life.

Before the diet, Charlie had that surgery, for which Nancy and I will forever feel guilty. I think he has been affected by the seizures, the medication, and the surgery. They say the first two years of a child’s life are the most important in terms of brain development and his brain got robbed of its second year. He has some autism. He’s a happy kid now, but did the surgery take a bite out of him? Absolutely.

It was tough doing the diet. Today, one of the primary excuses for not telling families about the diet, the popular phrase used by the medical profession, is that it’s a drastic lifestyle change. Granted, it is a drastic lifestyle change, and I wouldn’t recommend it for you or for me, but if you have a kid who is experiencing multiple seizures every day and who’s on multiple drugs, then it’s a vastly improved lifestyle change. Everything is ‘as compared to what?’ Compared to eating just a normal diet, it’s not that great, but compared to a lifetime of drugs and seizures, it’s a walk on the beach.

The ketogenic diet is basically a high-fat, no-sugar, limited-carbohydrate diet that mimics the effects of fasting. When you burn fat for energy (instead of carbohydrates the way you and I are doing right now) you produce ketone bodies. The thought is that a combination of these ketone bodies in combination with low blood glucose help to suppress seizures. The diet actually switches body and brain metabolism. Meals have to be calculated for each person, based on a specific number of calories each day. The person must eat every meal – no more, or no less, so it’s not easy. It’s much easier today though than when Charlie was on the diet, because now there are computer programmes that help to calculate the meal plans. Also, the foods available are much more attractive and much more palatable than when Charlie was on the diet.

There are a number of myths that the doctors use to dissuade people to try the diet. One is yes, it’s difficult. But in response to that, I ask the question: Where in medical school do they teach a course in deciding what is too difficult for any parent of a critically ill child to go through? Where do they teach that course? What is the name of the course that teaches a doctor to evaluate that? So I don’t think that’s a particularly fair argument to make. It should