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Why Lyme statistics are always off

Written by Huib, published Wednesday December 14th, 2016

How to interpret Lyme statistics? Numbers tend to give a sense of certainty. A month ago the national Dutch TV program “Care.now” opened with this sentence: “Lyme Disease is an epidemic in the Netherlands, because 25,000 people suffer from it.” Many patients were happy with this public recognition. As a researcher and author I wondered: how useful are statistics in Lyme Lands?

Official statistics about Lyme are, in any country, based on the infected part of the national tick population and on the number of reported cases of Lyme. These numbers are based on positive test results on two standard tests (Elisa and Western Blot).

Most doctors have learned that Lyme infection will only occur 48 hours after the bite and that a clear red ring needs to show up. According to this reasoning, one can only be infected with Lyme if:

  1. there has been a tick bite
  2. the tick was not removed within 48 hours
  3. there is a red ring
  4. the tests show the infection

As a formula, one could denote the possible number of Lyme infections per country as x = (a*b) – c {if: d & e}

  • a: infected part of tick population
  • b: total numbers of ticks
  • c: removed ticks within 48 hours
  • d: the red ring
  • e: positive test results

So logically, predictions about the number of people suffering from chronic Lyme are based on these premises or assumptions. This blog shows you why this type of reasoning might be slightly off.

On misknowledge

Dr. Klein Haneveld was also featured in the broadcast. He has a daughter who has been ill for thirteen years. He courageously shared his story of how he once tested her for Lyme, got a negative test result and discarded it as a possible cause for her health problems. Until his wife started researching herself and convinced him it was still a possibility. “My wife was right and I – as a doctor – was wrong. Doctors don’t know anything about Lyme.”

Isn’t this confusing? Someone with direct personal experience from a professional knowledge industry claiming that his field does not know enough about the subject? This fits with what I found during the research for Shifting the Lyme Paradigm. You can get a short impression of the level of common professional ignorance in this old blog post.

So how to look at statistics concerning the amount of possible Lyme infections?

On reasoning and statistics

In 2014 the RIVM, the information office of the Dutch Department of National Health, issued a statement saying that 5,3 million of my fellow countrymen were chronically ill. With a total population of sixteen million people, that meant about a third of the whole country. They went on to predict that this number would grow to seven million. That is quite some number, on a total population of seventeen million, isn’t it?

Apart from my recommendation that they rebrand themselves to the Department of ‘Public Illness’, how could this number relate to Lyme?

I’d like to offer you some possibilities, to allow you to think for yourself and look with ‘new eyes’ to numbers presented as facts or truths. I present them in a ‘what if?’ way.

  • What if people can get infected by other biting insects, pregnancy (congenital), sex, blood transfusion and hence also donor organs?
  • What if a red ring only shows up in 30-50% of the infections (after the bite of a tick or another insect)?
  • What if the current tests miss over 50% of the infections?
  • What if Lyme disease shows up with over 365 ‘faces’?

On average, people find out a shocking twenty years later that ‘their’ Alzheimer, MS, ALS, Parkinson, ME / CFS, Fibromyalgia and so on was actually ‘Lyme in disguise’. Pathological research has found the Borrelia bacteria in the brains of 90% of diseased sufferers of Alzheimer, Parkinson and other diseases.

If the premises of a theoretical model are wrong, all statistics that are produced by it, are useless.

What if all the research is there, but your doctor simply doesn’t know it – similar to dr. Klein Haneveld’s experience? I have a list of over 25 scientific studies showing the likelihood of congenital Lyme infection; dating back until 1985. An investigative patient found out my own government has known since 1994 that our blood supply has been infected. Did you know? The people making the data surely do not.

What could this mean? What if the risk is indeed higher to “get Lyme in your bedroom than in a forest“, as one researcher put it?

Yes, Lyme is an epidemic indeed. But how can anyone be sure about the actual numbers? It may be millions, in the Netherlands alone. Without a valid test, nobody knows for sure.

On reduction and education

Current medical science is overwhelmingly based on a reductionist model of science. Scientific reductionism is the idea of reducing complex interactions and entities to the sum of their constituent parts, in order to make them easier to study. Put into simple language, this means that complex issues are reduced to simple, linear relationships. To causes and effects.

Emotionally, this leads to a sense of security. Scientists are researching these potential relationships and categorising them, so expert doctors have all the knowledge they need to do their jobs. They will recognise what may be wrong with us, will be able to do a test to find out and will have the means to fix us. But what if they don’t? What if the situation in other countries is really not that much better?

The many, many stories I have heard from people with Lyme around the world tell a heart-breaking story of how they found out that the group they trusted to take care for their health, could or would not. Still they are asked to believe them. Without trust, believing seems to be no option.

A major factor in these sad stories is how the absence of a proper / reliable Lyme test plays out in lawsuits, with catastrophic effects for the patients. They don’t get insurance for their treatment, are declared ‘fit to work’ or lose custody over their ill children. Courts use medical doctors as experts and so more reliable positive test results are simply discarded as evidence.

That is why it is no wonder to me both parents of ill children or adult Lyme patients are so upset and try to warn others. Most of them do so, based on the same limited information. They warn other people for ticks, while to me that is the same as warning people not to sit on toilet seats to avoid to get Syphilis. It’s only a small part of the story.

Everybody is selective in choosing the studies and arguments they believe to be true or useful. What many people underestimate, is that the credibility of content is always made in context. That is why adverts for pharmaceutical products always have white suits in them. Most people still tend to believe authorities.

Whom I find the most credible sources of information are people who have both the professional background and a personal experience with the topic. A doctor such as Klein Haneveld, the American dr. Martz, who was diagnosed with ‘incurable’ ALS. Martz got better after being treated for Lyme. Dr. Spector, whose Lyme infection caused both cancer and a deafening silence from his own colleagues, is another example.

The controversies about Lyme have been going on for forty years now and I don’t see them ending any time soon. So you may want to educate yourself.

If you are ill, I know how hard it can be to read a full book. That’s why I made the short booklet ‘Lyme for Laymen’.

But if you know someone who has Lyme or one of its many misdiagnoses, you can. You will find out that you have a noble role to play in the story. Because if doctors lack the proper knowledge, they will never have the ability to give the acknowledgment your friend yearns for. Let alone a solution.

In times when simple solutions to complex problems might not be easily available, care and understanding make a world of difference.

Get your Priceless copy of Shifting the Lyme Paradigm. It is the only accessible source of information to appreciate how important you are as a friend or partner on this bizarre journey.


Suggested further reading:





drs. Huib Kraaijeveld

In: Blog Bureaucracy Lyme Nonsense 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

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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

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