At first, Liesbeth was relieved that she had finally found out what was wrong with her body. For the past thirteen years, she had been certain that it must had been a bacteria or a virus that caused her health problems. It would however take eleven years to find a doctor, who could correctly diagnose and treat her.
At the start of the treatments, professor De Meirleir estimated that they would last 18 months, but in the meanwhile Liesbeth has been going for 22 months now. At this point there is no indication of the total costs of her treatments. Her insurance does not pay for anything, while she has no income anymore. For the time being she can fortunately still pay for them, but does not know how long this will still be possible.
She needed daily IV's, but found it too demanding to travel from the Netherlands to Belgium each day. That was why she tried to find a Dutch doctor willing to do this for her. To her amazement none was willing, until she found one who would stick out his neck for her, after eight month of pleading.
Shortly before she found this helpful Dutch doctor, she was called in for an appointment with an internist at the Dutch Bronovo hospital; the same hospital where Lyme was mentioned as possible cause for the first time. This appointment was arranged by her GP without her knowledge. The internist made it plain that she should not count on his help, because according to him chronic Lyme didn't exist. If she wanted long-term IV's anyway, she should go elsewhere and be aware how dangerous they were. When Liesbeth responded by saying that she had no other choice, because she was desperate and was in agonizing pain all day, he reacted by saying that she should accept the fact that not everything can be diagnosed.
A first appointment at the UWV (the Dutch institute for Disability Payments) followed shortly after, during which three professionals were present. Then she was called in for a medical examination, conducted by an insurance doctor. This would take one hour. She took her medical file with her, which included the laboratory results from the German Augsburg lab and the updates from her Belgium doctor.
This insurance doctor never once looked at Liesbeth, plainly asked her ‘what she was doing all day?’ and did not even look at her medical file. According to Liesbeth, the file was simply ignored, because the contents were not in accordance with the Dutch Lyme guidelines. He did ask her supsicously how she could sometimes care for her old father, who lives at the end of the same street. “Ah, and how do you manage to get there…?”
This conversation lasted twenty minutes instead of an hour. She did not receive a report afterwards. She did however get his verdict six weeks later: 100% fit to work. She then hired a lawyer, who advised her to go into appeal.
This lead to a next meeting with two other UWV-employed doctors, who let her talk for 45 minutes and who did a brief examination. Because they could not see anything on the outside, they concluded it was no use to continue. Again, the German lab results were ignored. As a result she received six months of withheld disability payments, which seemed to be a good sign. To only find out that apparantly she was reported fit to work again, so she lost her whole income anyway.
So she took them to court. Her lawyer asked for a neuro-expertise examination, because according to her neuro-Borreliose is indeed medically recognised. Refunding the six month of payment had not been a recognition for Lyme as a cause, but seemed only to be have been a legal strategy to cover up for the mistakes in procedures that the insurance doctor had made.
For Liesbeth the aim of making this case was to both keep her disability payment and to get recognition for thirteen years of health problems. Severe problems that were both visible and medically accepted, and which turned her whole life upside down. At the court hearing she was given five minutes to tell her story. But since she was emotionally so upset by the precedings, her husband was allowed to read it.
The judge seemed to take a humane stance and halted the session, after hearing these words. His verdict was that a neuro-expertise examination had to be done. Yet he also ignored the German Lyme findings.
A neuro-expertise examination sounded impressive, but proved to be a conversation with an ordinary psychologist. This man plainly told her at the beginning of the meeting that “Dutch doctors would not be of any use to you. Don't count on getting any help and don't think you can win the fight with the UWV. Do you really think you can put chronic Lyme on the map all by yourself? Use your energy to follow your treatments to get better."
He then invited her to tell her life story and seemed genuinly interested. Weeks later his report came in: Liesbeth would have a MUS (Medically Unexplained Symptoms), so she was fully fit to work.
Everything that she had told the psychologist was ripped out of context and inverted to paint her off as a whiner with a difficult childhood. The ‘cheap trick’ her GP had done when she was 18, now worked against her again.
“This is how they break you”, she now tells me. She was so happy that after all these years, she had finally found out why she had been ill for so long. Furthermore she had a new perspective to become better and was very willing to pay for it.
To her it is literaly sickening how health insurance companies and government agencies twist everything in their own favour and oppose every step of the way.
The reason that she wants to make her story public is that she learned, when she was diagnosed, that this disease is also sexually and congenitally transmittable. This may mean that her whole family is in trouble.
So tick bites are not the only way to get infected and Liesbeth values proper education: the disease is debilitating and the denial of it by the (Dutch) system is bizarre and dangerous.
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