söndag, 18 oktober 2015 16:37

Bregje's story: the swamp of Lyme

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Bregje’s story should break the spell that many people live under: the unconscious assumption that if someone falls ill, it is ”their own fault”. 

Pick the day, before you end up in a vase.” Loesje

I remember that during my Psychology studies a ”scientific” article was highlighted on the front page of a high quality Dutch newspaper. The high quality must have been in the kind of the printing paper they used, because I could not find it anywhere in the content.  The headline shouted, “Science discovers that “type C behavior” causes cancer.” When I read the whole article it became clear that there was no discovery at all. Everything was based on an assumption, which scientists call a “hypothesis” to make it sound more impressive.

This “discovery” however caused a whole range of prejudice towards people with cancer. It was suddenly only because of their nasty character that they developed cancer growths.  It is completely plausible that there are emotional or spiritual aspects involved with why people have illnesses. It is also possible that a specific type of disease is fitting to the theme they are trying to avoid to face. Yet the above flatland type of reasoning must have been why Einstein said “There are only two things infinite: the universe and human stupidity.” He was not sure about the first, he added.

Please don’t fall into this cheap psychological trap regarding Lyme and why your loved one might have it. Our minds like to reason away things that we cannot easily understand. So what is more convenient than concluding that they brought it on themselves? This type of self-defense can cost you your relationship, as you will read in this chapter.  This interview took us eight appointments to complete. Bregje was simply not well enough to talk for a long time or to come to all of our appointments. 

Who is Bregje and how did she grow up? 

Bregje is a lady of almost 39 years of age at the time of our interview. She is 1.80 meter (5.9 feet) tall, skinny and was born in Amsterdam. From a very young age she was very active. She started with gymnastics, then continued with high level athletics, ran triathlons and found her real love in mountain biking. She biked across two continents, the whole of Europe and parts of Asia. It made sense to her to turn her hobby into a career, so she went to the Dutch Academy for Physical Education while she was already working at different physiotherapeutic organizations.  When she was 21 she cycled the five highest roads in the world, including the Khardung La, at an altitude of 3.8 miles. During our interview she suddenly remembered that during that trip her weight dropped from 137 pounds to 108 pounds in six weeks.

She came back to the Netherlands just before her graduation and went to visit her GP, who tested her and concluded that she was dehydrated because of diarrhea during the biking trip.  What was she like as a kid?  s a kid she was called “sun ray” at home. Still she is one of the most gentle and positive people that I ever encountered. She tells me that she was however not always so sweet. The moment people were treated unfairly she would turn into a lioness. Mutual respect is of the utmost importance to her.  She was always actively involved in sports, always climbing, playing and camping outside. She was not very girlish, she admits with a grin. 

Bregje’s home situation was dominated by the divorce of her parents when she was at a young age. Shortly afterwards they got back together again. Ten years later they divorced again. Her parents had a different approach to education. Her mother was focused on what her children needed to develop as human beings, while her father was very much aimed at them getting the best school results. While her grades actually were top of her class, he would tell Bregje off for not putting enough effort into school and predicted her a future as a dishwasher. She thinks that maybe he could not handle the fact that she could get results without putting much effort into it. 

The stressed home situation left little room for attention for the two daughters. They were treated very differently. Whereas her sister was seen as the perfect daughter, Bregje was considered as not so perfect. Bregje was called “egotistical” by her parents, if she expressed she was not feeling well. So she learned at a young age not to show that she was ill. Yet already in the first year of her life she was often hospitalized. As a baby, her skin had a yellow color, she did not gain enough weight and an EM skin rash was discovered. At the age of two she was operated on, on both eyes, because of the risk of becoming cross-eyed. 

When did her complaints become apparent? 

Around the age of sixteen, Bregje’s symptoms became serious and were very hard to hide. Before that age she already had suffered many headaches, but she never showed that she was feeling ill. Yet at sixteen she started to develop a multitude of symptoms: bronchitis, cysts in her sinuses and chronic tiredness. This caused her to become depressed. The resulting drop in her energy level both caused her to feel much more ill and also left her less resilient to deal with her stressed home situation of divorcing and misunderstanding parents. 

At the age of nineteen, she was operated on for the cysts for first time. This operation did not help, since the cysts came back immediately. Although she visited many doctors during that time of her life, none of them ever thought of or tested for Lyme. 

When did her stroke happen? 

After her graduation in 1999, Bregje started her career as manager of a fitness center. She gave aerobics, power lifting and Tae Bo lessons herself and had a planning and management role in addition to it. This went well until a day in November 2000, when she was cycling to work. Before she left from home she already felt a weird pain in her lower leg. She was not really bothered with it, since she had the advantage of being trained from a young age to ignore what was hurting.  

Yet when she nearly crashed into another bicycle, she discovered her right eye was not working anymore. She had not seen the other bicyclist coming at all. She went straight to her GP, who was alarmed and sent her to the hospital right away. The hospital did some tests and only found some increased pressure on her eyeball. The MD in the hospital was not worried and sent her home. She went straight to work and did not think about it anymore until a very strong sensation hit her on the way back home that night. She felt that she was dying. 

Two weeks later she had a stroke in the left side of her brain. She found out when she could not say the words “good morning” to her partner when they woke up. She felt as if she was drunk. When she tried to put her teacup down, she spilled all the contents over the bed. Bregje tried to get out of bed by herself and fell on the floor. Then her partner noticed something was very wrong. 

What happened during the day of her stroke? 

It was 9AM and her partner immediately called Bregje’s GP. Her GP only had time to see her some three hours later regardless of the fact that her partner told him very clearly what was wrong with her. When they finally arrived at the GP, he insisted that she herself had to tell the story, completely ignoring the fact that she could not talk anymore. 

As a side note, she tells me during the interview that while recalling this incident her mouth suddenly feels like it is swollen and numb again, as it did that day. It is amazing how our body remembers everything and can shift back in time, at the moment our attention is focused on a specific past memory. 

Finally it dawned on the GP that indeed something might be wrong, so he called the hospital. The hospital said they only had time at 4.30 PM. So from the time her partner called until the time the hospital was willing to see her, over 7 hours had passed. She tells me they did learn from it. If she would call her GP now with the same complaints, an ambulance would come with screaming sirens. 

In the hospital the same nightmare happened: the specialist forced her to tell the story herself, which she still could not. Bregje tells me that this is one of the most horrible experiences she had that day. She felt like a baby, completely unable to express herself and on top of this she was also unable to express she could not communicate, which she was forced to do by someone that was supposed to help her. She could not speak, she could not write, she could not do anything to communicate while the doctor was looking at her impatiently. At long last, her partner interfered and told him what he had witnessed that morning. This finally seemed to put some sense into the doctor and he started to do some basic tests. At that moment, Bregje finally collapsed, because now she knew that she would be taken care of. The remaining 25% of her consciousness switched off. 

When her parents came to visit her in the hospital that evening, she did still recognize their faces but felt nothing anymore. No empathy, no memory of being related to them at all. Somehow she did realize that this was strange. It felt like looking in a magazine with pictures of familiar faces, yet without feeling any connection to her parents and life partner. She said that the stroke was a total reset. 

That night her fight for her life started, after her partner and parents left her room. She describes it now as a search to find relaxation and to find the neural connections in her brain that she needed to be able to talk again. She ran many marathons in her dreams. She tried to figure out what neural pathways she needed to be able to whistle again, something she normally did throughout the day. So she started to train herself to at least learn how to whistle again. 

When she woke up the next day, drenched in sweat, the first thing she saw was a spider in its web. Before the stroke she always had been very afraid of spiders. Yet now she saw a glow around it. She felt it was a spark of life, which she suddenly could see around the spider, as if it was a light bulb. It felt to her as if she was also allowed to just be for a while; to have her own web in a quiet space in the corner and to be allowed the time to recover. She tells me that this was the first time she ever saw an aura. 

After three days, the hospital tests started. Before having any results of these tests, the doctors came to their own conclusion. They told Bregje off for being stupid enough to take contraceptives while being a smoker. They were blaming the stroke on her. She tells me no GP will ever warn young girls for increased risks of taking contraceptives if they are smoking. The hospital personnel went out of their way to conclude something that they could not yet know. Only at the end of that day they made an MRI scan of her brain. She still remembers how horrible she felt that whole day, believing them that whatever she had was “her own fault.” The results of the MRI would be ready in the morning. 

Very early that next day, the doctor woke her without any of her family present to support her. Without pause, he told her that she had had a stroke. A blood clot had traveled from her leg to her brain and caused a vein to explode in her head. Because of her physical education she knew perfectly well what a stroke was and how it was caused. She also knew that people over sixty were most likely to get strokes; not a healthy girl of 26. She still could not communicate and the doctor just left the room, leaving her alone with her thoughts. 

During the interview she still wonders how doctors could treat people like this. Why would they first blame it on her without having any test results? Why were they so insensitive to present information like this to a disabled girl, who had just lost the ability to talk, without alerting her family first? 

However, when her parents did arrive later that day, they did not really help. Her father added some more oil to the already burning fire by asking her sternly how “she could have brought the stroke on herself ”. He was sitting on the right side of the bed, at the side of her face with the eye that did not work. She could not see her father, but heard his accusation clearly. She still remembers how her body instantly stiffened up. It would take three years before she wanted to see her father again. 

Her mother made it even worse by regressing into an old drama of her own. Also sitting at the wrong side of the bed, her mother kept on talking about how she had lost her own father when she was seventeen years old. Now she feared that she would outlive her daughter. She was holding Bregje’s arm very tightly, hurting her without even noticing. She kept saying how much it had hurt her when she heard the news of her father’s death. Completely ignoring the fact that her own daughter might have needed some attention at that very moment. A daughter that still could not communicate. 

I find it amazing how resilient people can be. After having shared these clearly painful memories with me, she smiles brightly and exclaims: “So now I have two birthdays! One in February and one in November.” 

Can Lyme cause a stroke and who told her? 

Bregje had never heard of Lyme disease before she had her stroke. The first time that she heard the word “Lyme” was a week after the stroke happened, when the neurologist told Bregje that her stroke was most likely caused by Lyme. He told her that she was the first one to ever get an official diagnose of Lyme after a stroke in a Dutch hospital. And he immediately advised her to never have children, since according to him it was well known that Lyme is passed on from mothers to babies (in utero). That same MD also suggested her to smoke marijuana instead of taking blood-thinning medication. She is still puzzled by this incident; they do know what works, but for some reason are not allowed to say so officially. He left that remark about marijuana out of her medical files. 

A strange coincidence occurred during that same week: a friend of Bregje ended up in an Austrian hospital with acute meningitis. While many people think that the medical knowledge about Lyme is much better in Germany and Austria, it took her six years to get the real diagnosis of her “meningitis” - Lyme. So in this case, the Dutch hospital was more accurate than an Austrian one. Strange, isn’t it? Two friends in two hospitals in the same week, both with brain injury caused by the same parasite. For one it took a week to get the proper diagnosis and for the other six years. Yet neither of them got effective treatment. 

The full version of Bregje's story can be found in the e-book Shifting the Lyme Paradigm; the Caretakers' guide through the Labyrinth'.

You can get your own Priceless copy by clicking on the link.

Read 3445 times Last modified on måndag, 30 november 2015 18:26

Huib Kraaijeveld

Initiator On Lyme Foundation