I was born in 1971 in the Netherlands and started to get all kinds of complaints from the age of three: ranging from chronic sinusitis, chronic pain syndrome, boils, unusual bumps on my skin, chronic fatigue, a bizarre high muscle tension, digestion problems, joint pains and chronic infections. I had glands the size of marbles and would play with them on my chin. The most bizarre phenomenon of this series was spending over three years in a wheel chair after both my calves mysteriously exploded when I was fifteen. At the age of seventeen I did not believe I would reach the age of twenty. Nor did I want to in the state of constant pain I was in.
No wonder I got misdiagnosed by sixty different specialists, either inside or outside the official medical system. Of these 60 doctors, two were helpful. They just admitted honestly they had no clue what was happening and were willing to help me find out. I found out how in general 'experts' have a tendency to just say anything, if they do not understand what they see. The downside of having a hammer is seeing nails everywhere. I also found out they mostly have a preference for the worst they can think of, including suggesting to amputate my leg without having any clue why. Maybe those doctors even assumed that it was reassuring to offer any diagnose, no matter how widely off they were. I can tell you it is not.
I experienced how most of my old my friends would all disappear; probably because they were afraid of something they could not label. Which prevented them from feeling relaxed around me, leaving me very lonely as a teenager. How kids would ask the one pushing my wheel chair how I was doing. How others suddenly appeared and started to carry me up the school stairs in my wheel chair. They also cycled the long and windy road to my parents’ house. I rewarded them by making audiotapes for them, tailored to what they liked. Some of them are still friends now and so is music.
I remember a teacher trying to prevent an ambulance taking me to a hospital, because my leg was turning black. He was convinced I was faking it to legally skip lessons and only realized what he did some fifteen years later, at a school reunion. In the hospital I had to break an assistant doctor’s nose, when he just ignored my warning not to touch my leg out of sheer curiousity.
I experienced what a blow it is a kid to have to stop a sports career (in my case high level soccer) because of suddenly ending up in a wheelchair. How so much pain just stops all possibility to connect; it was like living in a grey cocoon. How the prospect of not being ‘normal’ – in my mind meaning not getting a girlfriend as a ‘cripple’ and living with this amount of unbearable pain - unconsciously made me decide to just block all pain and to ‘fake it until I made it’.
As a young adult I was always dead tired and needed some fourteen hours of sleep each night. Still I would wake up feeling as if a train hit me during the night. I was lucky being intelligent enough to easily get through my schools and my Master’s degree in Social Psychology. But a normal job was undoable for me. I tried some jobs, but would become ill in weeks.
Somehow I managed to steer around my limitations. I became an entrepreneur at the age of 25, even though I actually had no clue what I was selling. My clients apparently did and I worked with many interesting people and even more cool companies. Most of my friends, colleagues and clients never noticed I was in pain. I didn’t like to complain and was more caught up in my own ‘fake it until you make it’ mechanism than I realized.
Around 1995 I went to a well known Dutch Natural doctor and he measured my muscle tension. His measurement instrument went off the scale and he asked me with a perplexed expression: “Why aren’t you dead?” I didn’t know what to answer him. I guess I was not done yet. When I started playing soccer again around the age of 28 with friends, I completely wrecked both my knees. Even though the surgeon predicted I would never be able to walk normally again, I do - thanks to aikido, regression therapy and energy healing.
In 2004 I received an article about Lyme and put it on my website. I just forgot all about it, until a friend called me on Christmas Eve 2006 to ask for my advice. His girlfriend was in the hospital, nearly dying from a dysfunctional spleen. I did not know what I could do except to call a health professional who I knew well. “Oh, that is Lyme”, she said on the phone, after I had described what was going on.
Right. I actually restarted reading the Lyme article for my friend, but while reading it I was shocked by how much seemed to be applicable to me too. The girlfriend did survive the hospital, so after the Christmas holidays we went together to a lady with a Dark Field Microscope, who could test for Lyme with more certainty than my GP could.
She was a seventy year old American lady who was trained both as a nurse and an analyst. She had recovered from Lyme herself. By then I had lost trust in most of the medical system, so it didn’t even occur to me to go to a hospital myself. Later I learned both antibody blood tests (ELISA and Western Blot) that are being used in hospitals have a certainty rate of finding Lyme accurately that is lower than 50%, so I do not regret that decision. Tossing a coin would have given me more clarity.
Well, we found it. My blood was swarming with parasites, as you can see in the picture. I felt disgusted with myself, seeing these squiggly beasts on the screen - knowing it was my own blood I was looking at!
I had, having a character that is being fond of experiments, already set up a strategy in case we would find the parasites. The same health professional that I called at Christmas Eve would treat me with Rife-frequencies, using a technology many people will neither know nor believe exists. It the same technology AC Milan and Lance Armstrong used to increase their performance and time to recover from injuries and cancer, in Armstrong's case. They did know the technology and it worked well for them. I too can attest it works. In my case it worked a bit too well that day. Don’t try this at home please....
In Dutch there is a saying 'operation succeeded, patient died'. We did kill all parasites, but I almost died in the process of a heart attack. Three months later I learned from the American Lyme expert dr. Lee Cowden why this happened: it was caused by the neuro-toxins that were being released by the dead parasite bodies. The amount of toxins had just been too much for my heart to cope with. We did not have thought our experiment through well enough. However, my experiment probably saved the lives of some other people later, since now we did know and could suggest to people to approach it more carefully.
Since I had had Lyme for at least 32 years already, my whole system was built around the parasite. Lyme, or better put the Borrelia parasite, likes an acid, oxygen poor environment. It eats away the magnesium in the body and disables one of the enzymes that are needed to turn normally healthy food into nutrition. To put it short: my journey of discovery had only just begun. Had I not met Holland’s best osteopath six months before discovering Lyme, I would probably also not have survived that period. But I did meet him and now he is one of my friends.
I discovered that Lyme is a weird disease, working not only on a physical level yet also on the mental and emotional layers of our system. I have spent the last seven years both discovering how deep a parasite can be embedded in my system as well as healing those layers and how well the epidemic of Lyme is hidden from public, scientific and medical view. Quite a lot happened in that period: the death of my grandmother, only just surviving a fire in my French house, doing an experiment with Baclofen to bring my muscle tension down (with mania as a 'side effect', which the psychologist who suggested me to use Baclofen forgot to mention), quitting my career in international business education, nearly going bancrupt after a first inititative to start a Lyme clinic in France in 2010 and almost losing my left leg in the process.
I've written more about how my life developed because - or maybe even thanks to - Lyme in one chapter of the book Shifting the Lyme Paradigm. You find out more about it here.