When Liesbeth was eighteen years old, she suddenly became ill. This expressed itself as a sudden loss of weight, extreme tiredness and mood swings. In a lab she was tested for Pfeiffer and Hepatitis B. Both tests showed up negative, yet somehow Hepatitis B was written down as the cause of these symptoms in her medical file. Within a year she lost twenty kilograms. Her GP called it Anorexia and blamed the home situation in her youth.
Liesbeth now describes this as a cheap trick, because her mother died when she was young and her father had a introverted personality, apart from the fact he was nearly always working. It would be a cheap trick that would hound her throughout her life.
In 1986 she was admitted to a confined psychological clinic, where she lived among people with severe addiction and social problems. In order not to be a burden to her then partner, who is now her husband, she ended their relationship. Her main treatment consisted of cognitive therapy, which did not make any difference. What it actually did, was damage her self confidence, so after release from this clinic, the 'Anorexia' became Boulimia. She was now 24 years young and lost all desire to live.
To hide this from her social surroundings, she began to lead a double life. This is something that nearly all people with chronic Lyme seem to recognise: pretending to be normal. Nobody noticed anything, while at home the sadness increased and she could hardly function. Eating disorders received little attention back then, she believed the psychologists telling her everything was her own fault and she could not get any other treatment. Because she already had one.
This proved to be a good motivation to start her search for inner strength, despite unchanged health problems. She started practising yoga, meditation and reading self-help books. She also found a psychiatrist who took her seriously. Slowly the quality of her life improved.
In the meanwhile she had gotten to know her own body well and had become stronger, both physically and mentally. So after a couple of years she and her old partner got back together again. She became pregnant with their first child and took a vow to never let it get that far again or to ever rely on people without proper knowledge anymore. This decision would be the start of ten good years. So good, she could hardly have imagined this would have been possible.
After 2,5 years their second child was born. Liesbeth followed an education to become a goldsmith and sold her jewellery well. Next to that, she worked two days a week in the contractor company of her partner and loved spending time with the two children. She could also do sports, skeeler with a friend and rebuild a nice social life.
This lasted until she went on holidays to Tenerife, when she was forty. On the third day she suddenly became ill again, during diner. It felt like her body went in a state of war. She would remain extremely nauseous and had ongoing diarrhoea.
Of course the most logical explanation seemed to be that she had eaten something wrong. But the symptoms would not stop during the next eight months. Her GP tested for bacteria or parasites, but these were not found. So he suggested that she should 'sit out the virus'. Which she did: for months she practically lived on the toilet. After nine months the vomiting and the diarrhoea did stop, but she remained weak. Only to become very ill again, six months later during another diner.
Now an extensive research started in a Dutch hospital, after which a specialist exclaimed that “there is nothing wrong with you. Hurray!”. Only when Liesbeth started crying in response to the remark and asked if she had spoken Chinese, it occurred to the doctor that this conclusion may not have helped very much. In order to maintain face, she said “but it is surely something bad...” Her advice was to drink a bottle of Yakult each day, based on the assumption she had an irritable bowel.
Her newfound desire to live disappeared and a whole new spectrum of physical symptoms started to appear: daily migraines, exhaustion, nausea, blather infections, bronchitis and other permanent infections. She consulted several hospitals, because her symptoms became chronic and her general health declined. Each time she received a different diagnosis, such as gall stones, rheumatoid arthritis or CFS. But there was no clarity, so also no appropriate treatment.
In order to force herself to remain socially active, she started to do voluntary work at the Ursula clinic, where she stayed in her youth. They were so satisfied with her work that she got offered a job, in which she was reasonably free to manage her own schedule. Despite the migraines she worked there for four years, without calling in ill.
The migraine attacks then became so extreme and lengthy, that she could not continue. Despite the fact that she never wanted to visit another doctor again, her relentless migraines forced her to yield. In 2013 she went to another Dutch hospital, where the neurologist referred her to an internist. This internist was the first - after eleven years of tests - to think of Lyme as the possible cause of her symptoms. According to her, it did not matter that Liesbeth did not remember a tick bite.
The Elisa test turned out to be negative and she was declared “unfit to treat”, with the literal words “Sorry, I am not allowed to do anything else now. It's probably ME / CFS and you can learn to live with that using cognitive therapy".
A few months later a migraine attack was followed by an epileptic shock. Liesbeth considered to hand in her resignation, even though she had grown fond of her job that left her with no energy to do other activities. Her colleagues and managers gave her such positive feedback that she decided to just call in ill first and postpone the decision.
However, she'd had enough and started looking for useful information herself. On the Internet she found the Belgium professor De Meirleir. He runs a clinic in Brussels for ME/CFS and chronic Lyme. Her first appointment was in May 2015. He used the tests from the German Augsburg laboratory, which indicated not only positive Lyme, but also many co-infections. In the Netherlands no tests are done to find these.
After research professor De Meirleir concluded that Lyme has most likely been the cause of her ongoing heath issues since she her youth: the weight loss, the mood swings, migraines and the many other issues. An indication of the correctness of his assessment is that - after 1,5 years of treatments - there is clear improvement. Liesbeth now has less pain and more energy.
Next to surfacing anger ('so this should never have happened, if they had looked for Lyme'), she also had to find a way to deal with her work situation. Since her job had been on a contract base, it eventually stopped and she ended up with the UWV. The Dutch institution for Disability Assessment & Payments.
Then the trouble doubled, as you can read soon in part 2 of Liesbeth's story 'From bad to worse'.
Please rate this story, so we can see if it was valuable for you. If so, share it to allow others to also read it.
Our mission is to tell and spread these stories in a way in which they are heard, showing the size and hidden misery of this worldwide epidemic in a nuanced way.
We can only continue doing that with your support. Do you value our work and would you like to enable us to keep going? Donate here.