I'm writing again... View 'Mooie Dingen'

The lost link between ALS and Lyme disease

Written by Huib, published Wednesday October 11th, 2017

The lost link between ALS and Lyme disease  

Knowledge about emergent diseases normally increases over time. Lyme Disease seems to be an exception to this rule. Claims that governments and scientists made around 1990, seem to have been forgotten. This article explores the lost link between ALS and Lyme. ALS is also known as Motor Neurone Disorder (MND) or as Lou Gehrig’s Disease, after the famous Yankee baseball player who died from it in the 1940’s. It is still claimed there is no known cause nor cure for it.

Reading time: 7 minutes. Watching time: 55 minutes

A few weeks ago I visited a friend to admire her new house. She wasn’t as happy as I’d expected. She told me that a good friend of hers (46) was just diagnosed with ALS. As ALS is considered a progressive and lethal disease, without a known cure for it, she was shocked to learn she would soon lose a dear friend.

Two months earlier, her friend had sudden deterioration of her memory, impairment of cognitive function and lost the use of the muscles in one arm. I’m not medically trained myself, but found this to be a peculiar combination of symptoms for ‘ALS’.

Some clinical tests for other illnesses were checked off, hardly any blood work was done and she was basically sent home to write her will and say goodbye to her young child and husband. Memory loss and the sudden inability to think straight were not included in the diagnosis process.

My friend asked me for some sources about a potential link between Lyme and ALS. I’d like to share these sources with you as well in this current article, as a timely example how knowledge can somehow be ‘forgotten’.

Media coverage

There is a specific reason to write this article now. This week, on October 18, a highly disputed broadcast by Zembla International called ‘deceit or Borrelia‘ seems to be repeated on Dutch TV.

It attacked a specialized German lab, using the edited stories of Danish Lyme patients, who could not get help in their own country.

The patients did not give their consent for the broadcast, and when they realized where the broadcast was heading, they found that they were unable to withdraw their cooperation. This led to a ‘counter’ documentary of their own making, which you can see below.

Tabitha, the first lady who you can see in this documentary, was also told that she would live another six months at most and should say goodbye to her young daughter. Her diagnosis was also ALS.

She found that Lyme was likely the cause of her deterioration in health, got treated for it and stopped the progression of the ‘ALS’. She’s still alive now, although hardly after the damage the original documentary had done to her care plan.

Differential diagnosis

According to medical researcher Phyllis Freeman, PhD,”a differential diagnosis is what specialist call ‘detective work’. Clinicians look for symptomatic and laboratory clues, have hunches, order testing and perform exams, and then rule diagnoses in or out, especially when one or more illnesses have similar symptoms or even lab findings.”

Part of that detective work is simply doing diagnostics by way of treatment. If a patient does not respond to a treatment for a specific disease, too bad, but then you can exclude it. But if they do, great news! Wouldn’t you think, in case of a lethal condition?

Allan Sheppard’ story, which was featured by the BBC, tells another tale. After the UK medical system NHS kept him in Intensive Care for two years with alleged ‘ALS’ and refusing his daughter to get a Lyme test from another specialized German lab, he is now improving while being treated for Lyme. Despite the UK government trying to stop her.

The story of Eivind Markhus is even more sinister. After he was told he would die from ALS, he had an American lab test his blood and found Lyme to be the real cause of his problems. He also improved after initial treatment and the progression of his ALS symptoms stopped.

Yet instead of spending 150,000 dollar on Lyme treatments, he spent that amount on legal cases, because his Norwegian government forbade him to get treated. He lost both the lawsuit and his life.

Recently a male Dutch ALS patient (34, with three little children), who had been previously tested – with the standard unreliable serological test – for Lyme in a so-called (ALS) ’Expert Center’, had to learn from a chronic Lyme patient and a Lyme Literate US doctor how to improve the diagnostics.

By buying antibiotics online in New Zealand and taking them for a few days, his body started to produce antibodies for Lyme. So suddenly the test was positive in another (Lyme) ‘Expert Center’, where they apparently don’t know how to do this.

He is now crowdfunding to undergo an experimental treatment, which his insurance refuses to cover as it is not considered ‘evidence based’.

The story of Dr. Martz, who is also featured in the award-winning documentary ‘Under Our Skin’, is the icing on the cake. He was told he would die of ALS as well, but found out by coincidence that he actually had Lyme and a co-infection, was treated for both of them and recovered so much he could give lectures in 2011.

Ice buckets

A relationship between ALS / MND and Lyme makes sense, looking at the findings of the 1990 research that was published in the article ‘Immunological Reactivity against in Borrelia burgdorferi in Patients with Motor Neuron Disease’ by Halperin et al.

This study showed that in almost 50% of the 19 people diagnosed with ALS, Lyme was the cause. Once treated, several of these patients improved. In that same year, 1990, the CDC published its first definition about Lyme and described the complex, systemic, multi-symptom and sometimes devastating chronic disease experienced by many Lyme patients – then and still today.

This may be shocking enough in itself, but someone took the trouble to really look behind the rethorics of this article and found that actually 90% of this cohort was positive for Lyme.

Did anyone ever do a follow-up on this promising research? No. It was simply hidden away and Halperin chose to become a co-author of the 2006 IDSA Lyme Guidelines instead, which maintain that ‘Lyme is a mild disease that is hard to get, easy to treat and hardly ever becomes a chronic condition’. Any possible connection with ALS or any other of the serious and previously acknowledged debilitating or even deadly conditions was no longer mentioned. Any long-term health issues are reasoned away, using semantics rather than ‘evidence based’ science.

These 2006 IDSA Lyme Guidelines have become worldwide policy, even though they were removed from the National Guidelines Clearinghouse and named as a case of bad ‘evidence based’ guidelines by the Institute of Medicine in 2011. To this day, both the CDC and WHO wholeheartedly support them, regardless of the hundreds of scientific publications that dispute them.

Today, 27 years after the Halperin study, people with ALS are routinely not (properly) tested nor treated for Lyme. Instead, friends and families are encouraged to empty ice buckets over each other’s heads to collect money for new research for a new cure for ALS.

The patient stories mentioned above will simply be discarded as ‘anecdotical’ by both mainstream scientists, doctors and policymakers. Yet, if these stories are not shared anyway, the knowledge in them will be lost and so is hope for other people like Eivind, Allan, Tabitha, my friend’s friend and their children.

Choices of media channels such as the BBC or Zembla are decisive which knowledge is made available to the public. I asked the editors of Zembla to reconsider broadcasting it again, but received a negative reply.

An intellectual ice bucket

Most of these diagnoses are simply words on a form, which either best fit the symptoms or simply fit the codes of the insurances. Almost all of them are based on clinical diagnoses only and can mean a life-sentence to the patients.

Yet they need to prove with 100% certainty that Lyme is the actual cause? How can they do so, with blood tests that produce over 500 times more false negatives than the current HIV tests? Even the ‘experts’ now state that they should no longer be used

The intellectual ice-bucket is that one disease (causative agent) can show up as many different ‘disease images’, fooling doctors, patients, immune systems and statistics alike. Although it happened before in history, with Syphilis, many people seem to find this idea hard to grasp.

In this current article I only used ALS, which is considered a lethal and incurable disease to all afflicted, as an example to open up your imagination. Yet I could have also used any of the other 364 known potential misdiagnoses of Lyme as well.

Odds are about 100% that you personally know people who suffer from several of these illnesses, as the list includes MS, Parkinson, Alzheimer, ME, Fibromyalgia, ADHD and so on.

This is why I wrote my book for people like my friend, as it’s much easier for her to see the scope and possibilities than for the people like her friend, who are disabled and so frightened that will tend to believe their medical ‘death sentence’.

Is Lyme always the cause? Most likely not, as with anything in life, but without a 100% reliable test we will never know for sure in how many cases it is. Can it be? Of course it can, in the current climate of ‘lost knowledge’. Here are just a few more examples.

In 1988, the Canadian Department of Health reported several cases of congenital Lyme infection. In 2017: silence.

In 2012, the WHO stated in an instruction about blood donation (p.84) that Lyme Borrelia infection can “occur after the bite of a tick, mosquito or horsefly and can survive blood storage temperatures“.

Did you know? Does your doctor? Not if they don’t stumble upon it in their private lives, as retired MD Dr. Al Miller did. He recently discovered his daughter-in-law (43) was wrongly diagnosed with – again – ALS and that her health improved, after she was (properly) tested and treated for Lyme. Dr. Miller has become very vocal about it.

Change?

Using normal human, scientific or professional logic does not really help to understand the current bias against Lyme as a potential cause for many different illnesses. It simply does not fit the current model.

So change will not come from ‘above’. Throughout history, it never has, because ‘above’ has no interests in changing a status quo. Both the CDC and the WHO are political organizations.

The main insight you may need to fully understand why a severe and widespread disease – or rather pandemic – is so systematically ignored, downplayed or simply denied to exist in the first place, is to appreciate what it means that Lyme is called a ‘political disease’.

This quote might give you a hint: “a patient cured is a customer lost”. That is why a paradigm shift entails more than just ‘finding a cure for ALS’ (or those 364 other diseases) and emptying a next bucket of ice cubes; no matter how well-intended the gesture is.

 

Huib Kraaijeveld, MA

Author of ‘Shifting the Lyme Paradigm‘, chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes

If you found this article worthwhile, would you like to take a look at the crowdfund campaign that serves to finance my work in a sustainable and honest way? This is how you can contribute to Lyme awareness and the impatient revolution needed to shift the current Lyme paradigm.
Would you please share this article on Social Media in order for more people to get this information?

Acknowledgements

A special word of thanks to Phyllis Freeman (USA), Dr. Kenneth Liegner (USA), professor Garth Nicolson (USA), Darrell Atkins (USA), Lada Zavadilová (Czeck Republic) and Camille (The Netherlands) for their contributions to this article.

References

Neurodegenerative and Fatiguing Illnesses, Infections and Mitochondrial Dysfunction: Use of Natural Supplements to Improve Mitochondrial Function. Garth L. Nicolson, Robert Settineri and Rita R. Ellithorpe. Functional Foods in Health and Disease 2014; 4(1):23-65 (page 23 of 65)

Role of Chronic Bacterial and Viral Infections in Neurodegenerative, Neurobehavioral, Psychiatric, Autoimmune and Fatiguing Illnesses: Part 1, by Garth L. Nicolson and Jörg Haier, British Journal of Medical Practitioners 2009; 2(4): 20-28.

Lyme disease-induced polyradiculopathy mimicking amyotrophic lateral sclerosis. Burakgazi AZ1. Int J Neurosci. 2014 Nov;124(11):859-62. doi: 10.3109/00207454.2013.879582. Epub 2014 Feb 7.

Chronic or Late Lyme Neuroborreliosis: Analysis of Evidence Compared to Chronic or Late NeurosyphilisJudith Miklossy. The Open Neurology Journal. 2012; 6: 146–157.

Generalised motor neuron disease as an unusual manifestation of Borrelia burgdorferi infection. Bemmer, Glocker, Kaiser & Lucking.

The Differential Diagnosis of Chronic Lyme Disease

Dr. Richard Horowitz has a section in his second book ‘How Can I Get Better?‘ (page 282) where he says “Yet, if Lyme disease, co infections and environmental toxins are the sole causes of ALS, I would expect to see even more of these patients coming in with the disease.”

drs. Huib Kraaijeveld

In: Blog Inspiration Lyme Media Human rights Science

"This book perfectly describes the plight of millions of patients, who suffer from chronic Lyme Disease in many countries all over the world."
Prof. Christian Perronne, France

"This book is a gift of truth and passion to humanity."
Mia Morales, Lyme patient, USA

"I received the book exactly on the day that I had decided to end my life. Huh?! Yep. I am 35 years old years and have been ill for 19 years. Now I know why: Lyme. Everyone should read this book!"
Miranda, the Netherlands

"This book offers a new practical, human centered way of dealing with health information. It is also ringing a bell for the new time how to work together towards health and thriving."
Kim Schimmler, MD, Germany

"This pioneer's work made it perfectly clear that, when "i" becomes "we", even illness becomes wellness."
Frans Vermeulen, journalist, the Netherlands

"In his crucial work on Lyme disease, dedicated social researcher Huib Kraaijeveld does not pretend to have all the answers, but guides us towards asking the upsetting and essential questions."
Prof. Cees Hamelink, professor Communication Sciences & Human Rights, the Netherlands

"This book reads like a thriller! It touched me deeply and I am sure it will change the course of history."
Linda Graanoogst, journalist, the Netherlands

"Well, I am wiping my eyes and blowing my nose, while tears stream down my face. I guess that is a good sign. You hit the nail on the head claiming that Lyme survivors need 'understanding'. I would like my own partner to read this book."
Anodea Judith, PhD & author, USA

"What an awakening perspective! Huib has successfully set a quantum leap for understanding and managing Lyme disease by common people."
John Wong, bestselling author, Singapore

"A true and unpretentious caretakers' guide to understand Lyme. This book will help you to completely understand what your friend is going through; regardless of the symptoms they have. I wish it had been written ten years ago, because it can actually save lives!"
Cheryl Versalle, Lyme patient, USA

"This book actually speaks to people beyond its target audience (caretakers of people with Lyme Disease): people like me who are not travel companions, but to whom it is not hard at all to have or develop understanding and compassion. This makes the reach of this book bigger, much bigger if you’d ask me. I am amazed a book can do all of this!"
Saskia Steur, business blogger, the Netherlands

"This book reads like an exciting novel, were it not that it concerns a deadly serious issue. It calls to contribute and take care of each other and our world. Read, weep, feel and act!"
Manfred van Doorn, leadership expert, the Netherlands

"A creative and very intelligent vision to dive even deeper into the world of Lyme, to look at yourself, other people, but also the entire world around you."
Friend of someone with Lyme

"The book indicates that Lyme disease can be a sexually transmitted disease. This will cause a tidal wave of awareness all over the world. Like the child in the old fairy tale The Emperor’s New Clothes, who exclaimed: 'But the emperor is wearing no clothes!'"
Ola Aniel Petterson, STD campaign leader, Sweden

"What a brilliant sociological work! I am sure it will have much impact."
Professor Neuropathy, Germany

"This book is a big eye opener. Both for friends of people with Lyme disease as well as for people with Lyme. Or for any other health issues, for that matter."
Martin Möhrke, medical research leader, Europe

"I cannot read any other book for more than two minutes now, in this hell called Lyme. Yet yours I cannot stop reading! I should have put it away hours ago to clean the house. But I simply cannot stop."
Ineke, wife of a husband with Lyme, the Netherlands

"This book is a delight to read. It offers soft candlelight and warm campfire camaraderie on an often dark and lonely journey."
Laura Bruno, medical intuitive Lyme expert, USA

"A very honest and yet witty way of helping those with Lyme disease. This book is full of ideas on how to help your friend with Lyme, as a travel companion on this crazy journey called 'Lyme'."
Lisa Hilton, Lyme advocate, USA

"Both the personal experiences as well as the author’s sharp mind turn this into an incredibly inspiring book that raises the consciousness of its readers."
Kara, ex Crohn disease patient, the Netherlands

"Tempting, informative and eminently readable! Shifting the Lyme Paradigm is an absolute eye-opener for those who are not aware of what the journey of Lyme disease entails."
Terri Mackinnon-Cross, CEO WorldLymeDay.com, Canada

"This book gave us the recognition and acknowledgment, which were like a band-aid on an open wound."
Sara, Lyme patient, Belgium

"Very insistently written based on intensive, almost existential, personal experiences, this book also gives a clear overview of all relevant information for both patients and caretakers."
Jan Eendebak, former chairman Lyme Foundation STZ, the Netherlands

"A relief to read, written by an expert who shares his dedication to his own path with us, and brilliantly written."
Muna, mother of a daughter with chronic Lyme, the Netherlands

"Playful, frightening, informative and encouraging."
Merel, kinesiologist, the Netherlands

"This book made me realize that there is too little known behind the phenomenon Lyme. In a challenging manner the author provides understanding of Lyme disease and suggestions for tackling this disease. I have 'prescribed' this book to many of my patients and mostly astonishment was soon followed by recognition. An absolute must for anyone with (still) unexplained symptoms or the people close around them."
Duco Kanij, osteopath, the Netherlands

"This book guides you through the labyrinth of Lyme swiftly, while it took us YEARS to even get this far."
Eugenie van der Linden, ex-Lyme patient and therapist, the Netherlands

"This book is an absolute 'must read' for everyone! For patients, for family and friends, and for doctors who can finally learn that Lyme is more than what is written in their textbooks and that they should not be able to dismiss "unexplained" complaints as psychological too quickly!"
Anne Fierlafijn, MD, Belgium

"Shifting the Paradigm of Lyme is not like any other book on Lyme that I have read. It appeals to a higher consciousness, and is analytical in an introspective way that is pleasant to read. This book is a friendly and warm reminder that no Lyme patient is ever alone."
Thomas Grier, biologist, USA

"This book show how caring friends can intervene to provide succor and alliance ‘against the odds’ of a potentially serious and very complex illness that is still poorly understood by mankind."
Kenneth Liegner, MD, USA

Bekijk hoe wij omgaan met persoonsgegevens in onze Privacyverklaring.