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

Open letter by Inge van Ulden to Luc Bonneux

Written by Huib, published Sunday June 26th, 2016

Luc Bonneux’s column in Medical Contact was followed by an open letter written by Inge van Ulden, MsC. She is a scientist, Lyme author and has been suffering from chronic Lyme during the last eight years.

“A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.” Max Planck

 A letter to Luc Bonneux by Inge van Ulden (MSC)

Dear Luc Bonneux

I recently read your article in the journal Medical Contact. Your statements, Luc Bonneux, suddenly reminded me of the story of my brother who had been traveling to India twenty years ago.

My brother told me that sick people there were left to their fate, because others believed they had called the disease to themselves due to their bad karma. They had brought upon themselves was the general belief. I could not believe people can be so coldhearted.

At that time I could not even have imagined that something similar would take place in our Western society. Unfortunately, I now realise, similar things do happen here [in the Netherlands; HK].

Lyme patients with many serious problems are hitting hard and thick brick walls within our society. Their physical symptoms are ‘psychosomatic’ according to many regular doctors. Oftentimes, furthermore, they are also told off for spending so much attention to their disease and suggested that they should just think positively and all will be fine. This may sound exagerated, but it is the bitter truth. Lyme patients are often not believed.

However, Lyme disease is a terrible disease which is always accompanied by fatigue. In some cases, extreme fatigue, so one can hardly get out of bed. Lyme disease can sometimes cause the patient to not be able to tolerate any kind of sound, light or movement. With ear plugs in and with band around their necks, some are locked in a darkened room for twenty-four hours a day.

In Lyme patients sometimes their nerves become damaged. This can result in severe and indescribable nerve pain. In addition, they often have numerous other problems; some serious, others merely annoying. Fortunately, not all Lyme patients are suffering so intense, but already some Lyme patients have committed suicide and that’s not for no reason. The physical suffering is terrible. That doctors do not know what to do makes it worse. But the fact that they are not to be taken seriously is perhaps the most painful.

Luc Bonneux, let me tell you this: your article helps to ensure that this inhumane situation persists. This made me decide to shed my light on your statements. I hope you read my letter, because you destroy more than you would like to. [does he? HK]

Luc Bonneux, do not get me wrong, I partly agree with you!

You write: “Chronic Lyme disease involves undisputed PTDLS (post-Lyme syndrome) and SOLK” (Somatic Unexplained Physical Symptoms; literally translated; HK). Here I partially agree. Both from my own research, and from the conversations I’ve had with a few Lyme doctors, I came to the conclusion that too many unexplained symptoms are grouped under the heading of Lyme. Like a well reputed Lyme doctor recently told me: “We have to watch out that Lyme is not going to the second reservoir after the Chronic Fatigue Syndrome (CFS).”

There are indeed many alternative therapists who dismiss all unexplained physical symptoms as Lyme, while it will regularly be the case that something else is causing the symptoms. I therefore share your opinion, Luc Bonneux, that a large group of people who believe they are infected with Lyme disease, may be suffering from other disorders, infections, defects or poisoning. Often they have a combination of different causes for their severe symptoms.

However, I do not share your view that we should shove aside all these problems under the denominator of “conveniently inexplicable”. I think one has to keep searching, until one finds different parameters and that these should be treated consistently.

For example, a vitamin B12 deficiency can result in similar symptoms as Lyme infection. These can also easily be confused. However, if someone has a vitamin B12 deficiency and simultaneously suffers methylation problems, this person will not be helped with hydroxocobalamin. An injection with methylcobalamin on the other hand, can work wonders.

The symptoms that you consider as SOLK can thus be caused in some cases by a conversion problem of hydroxycobalamin into methylcobalamin. Therefor there can be numerous possible causes, that are simply “unexplained symptoms” in your eyes. The problem is that knowledge of such causes is hardly present in mainstream medicine. I will explain later why this is the case.

Luc Bonneux, so I do share your view that people who think they have Lyme, sometimes suffer from other disorders. Incidentally, it often happens that people do have Lyme, but also suffer from other sources of taxation that often cause more problems than just the Lyme infection.

Would you want to know more? I share my vision with some Lyme doctors. These are physicians who according to you are not working evidence-based. However, I wonder whether you know what evidence-based is.

Luc Bonneux what you telling me now? Are you seeing a parallel pseudo-scientific universe?

At the beginning of your column you start with a beautiful statement: “Driven by activist patients this quack society has created a parallel pseudoscientific universe, including research, publications, conferences and even guidelines. Visit the International Lyme and Associated Diseases Society (ILADS) and tremble.”

From a literature perspective I think this is a wonderful exclamation. I also like to write poems. From my background as a scientist, however, I would appreciate substantiation of your statements, because it creates the opportunity for a constructive discussion. Now this sentence appears to me to be just an unwarranted conviction.

These ILADS doctors certainly work evidence based. The problem is that chronic Lyme disease is always a part of a multiple system disorder (MSD). As a result, there are several pathological parameters in the game which differ per patient. Within mainstream medicine a multiple system disorder can therefore not be researched. The cause of this is that regular doctor only observe results from double-blind placebo studies.

On the contrast, ILADS physicians are developing multidisciplinary treatment plans whose effectiveness can mainly be determined by empirical research. A treatment plan that is customised for each patient cannot be examined by a double-blind study.

In such research just one parameter may be changed to ensure validity, while twenty parameters need to be addressed simultaneously for proper multidisciplinary treatment. Therefore ILADS physicians work differently than medical science is used to usual.

Read more about this in the article “Why PLEASE study is not proper research”. [in Dutch only, so no link included. HK]

Moreover, the CBO guidelines [the dutch carbon copy of the IDSA guidelines; HK] are describing how mainstream doctors must act in the case of Lyme, which is in no way supported with references.

That is how the ILADS guidelines are different, but according to you, Luc Bonneaux, this is all bad research.

In this case I would like to know concretely what you do not like about certain studies that underpin the ILADS guidelines. That’s easier to discuss and then I understand better what you are talking about.

Because of the lack of references to the CBO guidelines, I am not able to figure out the quality of scientific research on which you and other mainstream doctors rely.

Given the content of the CBO guidelines, I am incidentally very curious what these studies are based on. Because I can give you many high quality scientific articles, whose outcomes are contrary to the CBO guidelines.

Personally, I think that doctors who work according to the guidelines ILADS oftentimes are much better able to support their story than regular Lyme doctors. I will explain in an example why I think that.

I have spoken with professor doctor Hovius [coincidentally meaning ‘archbishop’; HK] before, principal investigator of the Multidisciplinary Lyme Center in Amsterdam. He claimed that with the regular ELISA tests a Lyme infection is quite easily ruled out. I asked him how he knew that, because research had shown me different results. His answer was short: “This is scientifically proven.” He did not give me the time to ask what research he was referring to.

Recently, I visited a conference and talked dr. Wim Ang, the clinical microbiologist at the VU Medical Center. He develops the tests that are used by Hovius.

Ang said: “As a regular test is positive, you know almost certain that the patient has Lyme. If it is negative, this does however not exclude an active Lyme infection. We just know it does not.“

Hovius, the principal investigator of the Amsterdam Multidisciplinary Lyme Center, was saying very different things about the test than those who developed it. I’m in this strongly inclined to believe Ang. We may indeed assume that the engineer of design knows where his design is wrong?

Do you see it differently? Do you also know better how testing works than the specialist who develops these tests?

Furthermore, a few weeks ago I was visiting a ILADS doctor, who must unfortunately remain anonymous. Because otherwise people like you, Luc Bonneux, will try and nail him to the pillory.

I asked this well reputed ILADS doctor why he just chooses a specific test from a specific laboratory. In response, he showed me three quarters of a long presentation on how he based this decision on a thorough literature review.

He could tell me exactly how sensitive and selective this test was, and could interpret the data himself. He indicated to have been engaged in years of research on all different types of tests.

This is just one example, Luc Bonneux, but I have many like this. I therefore absolutely do not think ILADS doctors are not working evidence-based work. So I do wonder on what experience you based your opinion.

Indeed, it is quite a accusation that you make.

Luc Bonneux, I want to explain that the Borrelia bacterium is very unsensitive to antibiotics.

In one paragraph you explain why you think that the PLEASE study [financed by Zonmw and described in the NEJM article; HK] is not good scientific research. Again we agree with each other, were it not that I just believe that Lyme is part of a multiple system disorder, making double-blind placebo study such as the PLEASE trial useless.

However, you also claim that the Borrelia bacterium is very sensitive to antibiotics and that the use of long-term cures therefore makes no sense. You indicate that this has already been tested. May I know what research you are referring?

I myself have actually studied very different scientific evidence. In vitro studies show for example that the Borrelia bacterium does not die so easily. Certainly doxycycline (the most commonly used antibiotics against Lyme) appears – in vitro – to hunt the bacteria in the cyst. [1]

In addition, if someone with a red [EM] ring develops serious neurological symptoms after a tick bite and does not recover by antibiotics, I would conclude that the Borrelia bacterium in this case does not respond to antibiotics.

Or do you think it logical to assume that Lyme has been overcome and people who remain ill after a tick bite apparently all have developed very casually SOLK? What do you actually think PTLDS is?

Take a further look at Syphilis, another disease that is caused by a bacterium that is closely related to the bacterium Borrelia. If this disease is at an advanced stage, antibiotics can still do little.

Chronic Lyme is like Syphilis.

Apart from that, it is scientifically proven that the Borrelia bacterium can fold into a so-called round-body. This is also called the cyst form. This shape is without doubt resistant to antibiotics. [1]

In addition, has been shown to produce the bacterium Borrelia is very well capable of producing  biofilms, by which they are better protected against antibiotics. [2]

In addition, they might be found within within the cell of the human body, on an intracellular level. [3]

Especially against certain types of antibiotics, they are then fully protected within the cells.

Lastly, the Borrelia bacterium may well cross the blood-brain barrier, as it can deeply penetrate the tissue. [4]

Antibiotics have more difficulty reaching these locations. May I therefore ask you how there is that the Borrelia bacterium is sensitive to antibiotics?

Luc Bonneux, I wonder: what you consider to be evidence-based medicine?

You indicate that you’re a big supporter of evidence-based medicine. Then you claim that it cannot be demonstrated the bacteria by the lack of proper testing and that this would create a conspiracy.

You here makes a nice comparison: “If you can not find gnomes, it is not because they are untraceable, but because they do not exist”

It could be me, but I cannot follow your reasoning on this topic at all. I wonder what you would say to yourself, if the police told you, “Sorry, we could not catch the perpetrators, so there could have been no crime.”

As I mentioned, clinical microbiologist Wim Ang has very different experiences with Lyme tests. The standard ELISA test can detect active infection. In addition, it can show whether there has ever been in contact with the bacteria. However, this test can not distinguish between a chronic and already gone through infection. According to Wim Ang this was a given.

However, there are tests that can identify an active infection with more certainty. But they are simply too expensive and therefore not reimbursed. The LTT is a test that is better than the standard ELISA tests.

In Germany it considered reliable, but in the Netherlands a positive LTT result is not recognised by our internists. However, there is carried out a thorough research with a very large study population which proves the reliability of this test. [5]

If you feel that this is not a good research, I would like to have a good conversation with you. This research was, after all, carried out on a very large research group, which also had a solid selction procedure.

Moreover, it is conducted in cooperation with the university. Plus the fact that is is a German investigation. For me these are strong indications that it is about proper research. How do you see this differently?

I admit all laboratories working again with its own standards and benchmarks. Therefore, it would be a good idea to standardise the LTT for Lyme. A LLT is indeed an accepted diagnostic method for many infections. There is no reason to believe that the LTT also can not be used to demonstrate Lyme.

Via a LTT it can therefore be shown if there is an active Lyme infection after an antibiotic treatment. The problem is not that we do not find the bacteria, but that our Dutch internists do not recognise certain tests, while there is no valid reason to do so.

Moreover, there are also tests that directly demonstrate the presence of the bacterium Borrelia. A PCR test screens for the DNA of the bacterium, and we see that it is often still present after the treatment with antibiotics. Unfortunately, this test has a low sensitivity. If one does however find direct evidence DNA of the bacterium Borrelia, it is also evidence it actually exists.

One can also perform a so-called Borrelia extended culture test at the lab Pro Health [in the South of the Netherlands; HK]. Should you not approve of this lab, could you explain to me why you think so?

Via an extended culture test the Borrelia-bacteria are grown from a blood sample. When found in this type of testing, there is really no doubt that the bacteria resides in the blood.

Disadvantages of this test are the high costs, long waiting time and also have the possibility that it may have false negative test results.

So I think it makes sense that this test is not included in the basic package. The fact remains that if this test is positive, it also gives one hundred percent certainty.

Where else does Borrelia bacteria come from? With this test we find the Borrelia bacteria in the blood of very sick people who have already used antibiotics and who are labeled by you as SOLK.

May I add my own opinion, Luc Bonneux?

Luc Bonneux, you obviously like straightforwardness. So let me follow your example once and give you my opinion: you come across to me as a Grand Inquisitor rather than as a doctor acting on evidence based science.

Once you have taken the doctors’ oath, in which you have sworn to never to harm anyone. I would like to say that your remarks are little evidence-based and harms a large group of people, because your argument works against the development of a treatment plan.

You also promised, by pronouncing an oath to perform any operations for which you are not competent, perhaps you can therefore leave the writing of opinion articles about Lyme to people who do actually have an informed opinion? Part of your oath included that your opinion had to be testable. So I hope you can answer my questions in this letter.

Throughout your column I have missed a solution for patients who you believe to be SOLK. As long as conventional medicine does not help these patients, they will seek refuge in alternative medicine.

It is true that a part of these practitioners indeed are acting little evidence-based. A large part, however, is not.

But what is it that you actually do? Why do you actually write this speech? What would you like to achieve? It will certainly not lead to SOLK patients to better care. Why not spend your energy into  doing proper research on the possible causes of SOLK?

Physicians who achieve great success, doctors who make a large part of their ‘SOLK’ patients regain their lives, doctors who are not evidence-based in your eyes, but in reality are much closer to the truth than you, these doctors responsible with your baseless statements.

These are the doctors you are nailing to the pillory with your non proven evidence based accusations.

I do not dare to claim that we will know within twenty years exactly what defines or causes that ‘SOLK’ of yours exactly. It may not be Lyme, it will not remain inexplicable, but it might well be combination of factors, wherein Lyme sometimes is a part of the whole syndrome.

For mainstream medicine, with their fixation on finding the one parameter that causes all the problems, this is difficult to comprehend. The fact that there are twenty parameters which can vary and that everything is connected with each other, is difficult to handle within mainstream medicine.

However, if you do not understand something, it does not necessarily mean it is not true. You may simply not have the knowledge to understand it.

Kind regards,

Inge van Ulden


1.Evaluation or in vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi. Sapi E Kaur N, S Anyanwu, Luecke DF, Datar A, Patel S, Rossi M, Stricker RB.Infect Drug Resist. 2011; 4: 97-113. doi: 10.2147 / IDR.S19201. Epub 2011 May 3

2. Bacterial Amyloid and DNA are Important Constituents of Senile Plaques: Further Evidence of the spirochetal and Biofilm Nature of Senile plaques. Miklossy J. J Alzheimers Dis. 2016 Jun 13.

3. Intracellular localization of Borrelia burgdorferi within human endothelial cell, Ma Y, A Sturrock J J Weis

4. OspA CD40 dyad: ligand-receptor interaction in the translocation or neuroinvasive Borrelia across the blood-brain barrier. Pulzova L Kovac A Mucha R Mlynarcik P Bencurova E Madar M, Novak M, Bhide M. Sci Rep. 2011; 1: 86. doi: 10.1038 / srep00086. Epub 2011 Sep 8.

5. A novel lymphocyte transformation test (LTT-MELISA) for Lyme borreliosis. Valentine-Thon E Ilsemann K Sandkamp Mr. Diagn Microbiol Infect Dis. 2007 Jan; 57 (1): 27-34. Epub 2006 Jul 28.

drs. Huib Kraaijeveld

In: Blog Inspiration Lyme Media 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

"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.