Alicia is a happy, spontaneous girl. She likes shopping, socializing, going to concerts and writing. She is very enterprising and likes to travel. Her passion for traveling was probably created when we moved abroad for the work of Patrick in 2008. Alicia went to school there with great pleasure, had many friends and learned the language very quickly.
Unexplained, serious complaints
When we lived abroad for about a year, Alicia always came home with a headache and was often very tired. At one point Alicia got paralysis and could not go upstairs at school. Then all kinds of other inexplicable complaints followed. We went to the doctor with every complaint. We were being tossed around; in 2 years time we visited at least 4 neurologists and 5 internists. None of them could find out why Alicia was so sick. The diagnoses we received were varying from tension headache to chronic fatigue syndrome (CFS). Our feeling told us that these diagnoses were not correct.
Through a program on TV in 2011 we got the strong suspicion that Alicia might have chronic Lyme disease. By deepening our understanding of this disease, our suspicions only got stronger. We do not know exactly when Alicia had the tick bite, but she did have one on her chest. The tick was stuck in Alicia's skin and she took the tick out of it herself. Then it was very itchy for a while. Unfortunately, we did not know at the time what impact a tick bite can have. If only then had we known what we know now, then Alicia would not have been so ill.
Alicia could eventually go to school for only a few hours a day, with a lot of pain and effort. Almost without studying, she nevertheless obtained her VWO diploma in 2013. Super proud of her! Ambitious as she is, Alicia wanted to continue studying in the Netherlands (Zwolle). In 2013 she returned to the Netherlands. In Zwolle she used her time not only to study, when her health allowed, but she also made use of the opportunity to visit 'good' doctors who could make a correct diagnosis.
We did everything we could to support our daughter optimally. Anyway how: Alicia had to become healthy again. We made an appointment with the Lyme specialists at AMC Amsterdam, when Alicia lived in her student apartment in Zwolle.
The website of the AMC states that the tests they use to diagnose Lyme (Elisa / Western Blot) are far from reliable. Indeed, these tests did not show that Alicia had Lyme. We want to warn everyone for the available test to diagnose Lyme Disease: you can not just rely on these tests to determine or exclude Lyme disease!
Unfortunately, despite our repeated insistence, the doctor did not find it necessary to conduct further research. Alicia, still sick, was sent away.
In 2014, on our continuous search for healing, we ended up with a good Lyme specialist, Dr. De Meirleir in Belgium. After many studies, he diagnosed: chronic Lyme disease. Alicia could be treated with long-term antibiotic treatment via infusion. Unfortunately, doctors in the Netherlands did not want to cooperate. The position in the Netherlands is to use as few antibiotics as possible. At that time, however, that was the only treatment with which reasonably good results were achieved.
An unlivable existence, because of the lack of treatment
It is frustrating if you can not do anything to make you feel better while you are still young and you feel as sick as Alicia. In any case, 'learn to live with it' is not a satisfactory advice, because every perspective on a normal life is lacking. We could not settle for that and have been to various (regular and alternative) doctors. Unfortunately, Alicia's health did not improve; she became increasingly ill.
Alicia eventually ended up in a wheelchair and was offered a custom home with a stairlift from her home town Zwolle. Her wheelchair and the bank were exchanged for her bed in early 2017. Alicia is now there permanently, since May 2017: she spends 24 hours a day in a darkened room. She is extremely tired and suffers unimaginable pain. She is even too tired to watch TV. Too tired to breathe. Alicia is completely exhausted.
Since Alicia lives in the Netherlands, I, her mother, have regularly come to the Netherlands for a long time to look after Alicia. Since May 2017, I now take care of Alicia full-time and live apart from my husband and my son. My husband is still working abroad. Right now he can not afford to be without work. How else can we pay all our expenses?
Getting well again now seems close, after so many years of searching and fighting for recovery. If Alicia can follow the treatment in Frankfurt, her chances of a normal life are so incredibly big. We can hardly imagine it anymore. We hardly dare to think about that either. Because that chance is only there, if you want to help us with that. Can and may we ask that of you? Will we ever forgive ourselves if we do not, while we could have saved Alicia?
Carolien Kellner, the mother of Alicia