Pounded on by a Paralysed Pastor
Written by Huib, published Thursday April 5th, 2018
“Why are people attacking you so violently?”, a Dutch lady asked me yesterday. She had accidentally discovered last month that she has had Lyme for thirty plus years, because of me being busy on Social Media. Being connected on Facebook now, she could see the sometimes odd reactions to my posts. “Well, actually it’s been pretty calm lately. I haven’t been called a quack, danger, lier, cheat, asshole or thief for weeks, by the people I work for. It’s almost becoming boring…”, I replied with a grin, seeing her astounded face. Within an hour after our conversation, a man with ALS reacted on an article. The article described how already in 1990 it was found that 90% of the people with an ‘ALS’ diagnose were actually infected with Lyme. Which can be treatable, if diagnosed in time. Below is a summary of the original online conversation, with some typos or grammar errors corrected.
P: “I was diagnosed with ALS and thought it was Lyme disease. I did antibiotics for several months also did IVIG blood plasma transfer for eight months and my symptoms got worse. As a matter of fact it was in my early symptoms when I could still walk. I am now in a wheelchair. A lot of the herbal stuff is snake oil. It’s easy for you to sell this when you don’t have ALS ravaging your body. Believe me I’ve tried everything. Going vegan, vitamin , supplements, herbal concoctions saying that they cure ALS and guess what: I got worse. The ALS Association of Georgia is full of doctors and medical professions, who actually care about their patients. As a matter of fact if there was a simple cure like this, the government take credit for it. The government spends multi-millions of dollars just to treat us and give us assistance. 100% disability rating. Your Crusade will lead you to nowhere!”
Me: “I’m not on any crusade and I’m sorry to hear that you’re not doing well. The fact that so much money is now spent, could actually be a reason to look into Lyme as a POSSIBLE cause for many different diseases. By denying it exists (in a persistent form) countless people are denied access to early diagnosis and treatment of an infection that can evolve into (atypical) ALS or 368 other supposedly ‘incurable’ illnesses.”
P: “Fortunately I live in the United States of America. We have some of the best professions in the whole world. Including our medical professions. Dr. Glass and his team do this as a non-profit and has millions of dollars behind him to find a cure for ALS. Believe me if there was a cure like this, they would have found it already.”
Me: “To me, the USA seems to be have the most corrupted medical system in the world, in collusion with the very same government agencies supposed to regulate it. Which has become legal corruption in the USA since 1980.”
P: “You know all this is fake news. It has a spin. You need to check the real CDC site. Trust me it will Enlighten you. or check out NCBI. Government on Lyme disease and ALS.”
Me: “If you want to trust these systems, be my guest. I just beg to differ. I actually looked at these sources and it DID enlighten me! Enough to help provide information to fuel the current RICO lawsuit against doctors, insurers and Yale that is now passing through your great law system.”
P: “Huib Kraaijeveld, do you have a debilitating disease or terminal illness like I do? I speak from experience. What do you speak from things that you heard? Sorry for being rude.” (I do love these passive-aggressive communication tactics…)
Me: “I had Lyme for 32 years and was in a wheelchair.”
P: “Prove it…. I got a feeling you’re on here just like everybody else peddling herbal supplement.”
Me: “End of conversation. Keep your beliefs and prejudices, and go bother someone else with them.”
(He then posted the ‘fraud alert’ image above and suddenly I saw that he was a pastor) “Aha, you are a Pastor! From a Pastor, I’ll take that ‘fraud alert’ as a compliment.”
P: “I put my hope in Jesus and not what you’re peddling. Enjoy your life.”
Well… I’m happy that I’ve been practicing aikido for some 17 years now. It was useful in my prior career in business education as well, because I would often get a lot of bullshit from frustrated groups of participants, would welcome it, turn it into ‘bullshit art’ and project it straight back at them as a learning experience – with a grin. Which earned me the highest rankings in Europe back then.
Everything is energy and all energy can be used to create harmony. So let’s use this for my current professional field: to create some awareness in the highly polarised field of healthcare, where everyone seem to be fighting everyone else.
A few observations first. I’m pretty sure this man, whom I never talked with before, had not read the actual article, but simply reacted on the header of the FB post, edged on by his wife who called the idea that institutions could profit from a disease a ‘conspiracy’. Is it really so hard to understand that what is considered ‘costs’ to society is called ‘revenues’ for another system? Secondly, I never mentioned any specific cure for ALS somewhere, as Lyme treatment is precision medicine and outside of my own field of expertise.
Thirdly, the pastor accused me of ‘peddling herbs’, creating fake news and implicitly about lying about my own time in a wheelchair in my youth, without a shred of evidence or even taking a look at the links I gave him (added above as external links) because he reacted within seconds. Fourthly, his choice is to hand over his own life to things ‘above’.
So according to this Paralysed Pastor, I should have faith in the medical system, government and religion? It didn’t help him a lot, apparently. It seems to me that people often rather suffer and die, rather than to question their own beliefs. That is their choice and not my business. I’m neither into the ‘saving lives’ nor ‘saving souls’ business. Or as Frank Zappa eloquently put it, I don’t have ‘twenty million dollars in my heavenly bank account’.
I’m simply teaching people to understand complexity, to think in terms of possibilities instead of certainties (or even worse: ‘Truth’), to deal with insecurity and to have empathy rather than prejudices. And work in a global team of highly skilled professionals to address the current status quo around Lyme as a human rights issue with the United Nations rather approaching it as a ‘medical scientific debate’.
If people apply this, they may be able to save their own lives or the lives of their ill friends. They may then learn that there is indeed a big difference between kneeling down and bending over, to quote Zappa again. However, if they want to cling to their medical version of the Stockholm syndrome, so be it.
Am I responsible for their learning? No way! Are people free to attack me? Sure, they can try all they like. And I’ll toy with it, as long as I can turn it into a lesson for others. When I told that Dutch lady that my students had the nickname ‘Senior Insultant’ for me, she grinned broadly.
They only thing that actually did bother me about this conversation is how people – that I do not know – take the liberty to attack my integrity with baseless accusations. It’s nice when people appreciate how I did my utmost best to keep it intact during the last seven years; exactly by not affiliating myself to any commercial product or service around Lyme.
The people that do appreciate this are already contributing to the crowdfund campaign that serves to finance my independent work in a sustainable way. By doing so they contribute to real ‘non profit’ Lyme awareness and to the impatient revolution needed to shift the current Lyme paradigm.
If people feel offended by my virtual aikido, I’m sure they can find a therapist to complain about it. Or learn that what they project, will simply come back to them.
“You can lead a horse to water, but you can’t make it drink. You can put a man through school, but you cannot make him think.” – Ben Harper
Cheers,
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
drs. Huib Kraaijeveld
"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
