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How the CDC is blocking your treatment options for Lyme

Written by Huib, published Saturday August 5th, 2017

In the same week the CDC issued its already infamous ‘warning’ about the risks of longterm Lyme treatment, my friend Carla had both her legs amputated. Lyme was in her medical file, but the was not treated for it.
“Reality is sometimes stranger than fiction” Mark Twain

A risk assessment

If you want to know more about the critique on the CDC bogus report, I would recommend reading David Connor’s open letter to the Washington Post about it. To me it simply suffices to say that a risk assessment should be based on weighing the risk of doing something compared to the risk of not doing something.

A preselection of only five negative cases simply is not sufficient. Antobiotic IV treatment is used for many different diseases. According to the same CDC 41,000 people (in the USA) get an infection because of using this treatment device. Five negative case reports consists of only 0,012% of this total number, which makes it an absurd logical foundation for any warning.

Besides, the weighing is missing: what is the risk of not treating a persistent infection? The newly appointed professor ‘evidence based medicine’ Knoop – who was involved in the PACE trials that were coincidently labeled as ‘research fraud’ – would surely agree.

Dancing legs

My friend Carla, whose story is partly told in my book ‘Shifting the Lyme Paradigm‘, would have a different outlook on this risk assessment. Two days ago both her legs were amputated. When the doctors saw Lyme as a fifth diagnose in her medical file, they genuinely expressed their deep sympathy.

A month ago, after a final attempt to try and improve her situation by pumping morfine directly into her spine, Carla suffered two haemorrhages in the hospital. She received no treatment for Lyme nor was the connection to her symptoms ever made. Biologist Wim Ang, the only professional in  Dutch academics who acknowledges the current tests are flawed, works in the same hospital.

The doctors and nurses in this hospital are really trying to help my friend as well as they can. The fact that she had been a dancer before she became ill, really moved them. What saddens me most, is the fact that the knowledge that may have helped them to maybe cure her condition, is simply not made available to them.

Would a Lyme treatment made this amputation obsolete? We will never know now. Does the thought make sense? Of course. Medical academic hospitals claim that they do not know what causes Complex Regional Pain Syndrome or dystrophy, apart from abnormal infections. CPRS is diagnosed based on clinical symptoms only; there is no diagnostic test for it.

The Borrelia causes infection and research has been publish about its relation to neuropathy. Clinical diagnoses are dismissed and unreliable serological diagnostics are used as proof of the absence of the (persistent) infection. Other ways to diagnose, such as Dark Field Microscopy with which the Borrelia was found in Carla’s blood, are dismissed. However, her health improved, when she was undergoing alternative treatments for Lyme two years ago. Until she ran out of money for it.

Anecdotical evidence

Did the CDC take into account what the risk is to not treat persistent Lyme infection? No. Their five cases are considered ‘science’ (without any reference), while the countless other people who suffer because they were denied treatment are discarded as ‘anecdotical’.

The first reports of patients, who had their medicines forcibly taken from them, have already come in.

This week the Dutch government also proudly announced to spend 2,5 million euro in the next three years on Lyme disease. This money will go to the same professor, who wrote the highly disputed Dutch national Lyme Guidelines and who has published together with the usual suspects: Wormser, Shapiro et el. He claims that the current two-tier testing, on which the CDC accidentally has a worldwide patent, is flawless.

Mark Twain would be delighted, I’m sure, as mainstream media basically copied the CDC message and spreads it around as ‘science’. In the meanwhile this medical elephant in the global living room remains hidden in plain sight.

Sometimes it simply helps me to write, to prevent my head from imploding. Hopefully, as a positive side-effect, you found it educational. Maybe I should write something about basic marketing strategy soon, to make some sense of these senseless coincidences of this last week? One of these coincidences was that the CDC published this two weeks after our meeting in Geneva with dr. Dainius Pūras, the United Nations Human Rights Council’s Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.

Carla is doing well, I am glad to say. So many people who read my book asked me about her, that I interviewed her to tell you herself. The interview is in Dutch, but subtitled in English (go to setting in the Youtube screen to see them and you can put the movie on ‘full screen’ if they show up too small)

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

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.
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drs. Huib Kraaijeveld

In: Blog Bureaucracy Lyme Media Human rights Nonsense Social 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

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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

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Linda Graanoogst, journalist, the Netherlands

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"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

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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

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Professor Neuropathy, Germany

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Martin Möhrke, medical research leader, Europe

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"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."
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"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."
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"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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