"People fear anyone who differs from what is considered normal, and in a small town the idea of normal can be as narrow as the streets.” Elizabeth Chandler
In the reviewed edition of this book it is also the only interview with someone who had read my book already. Elma stumbled upon it after her son Wesley had received an official diagnosis of Lyme with an ELISA test in September, 2013, but did not get any better after ten days of antibiotics.
Partly because of reading Shifting the Lyme Paradigm's first edition, but mostly because of their own new reality, she noted how much is involved with a kid with Lyme. Not only finding the right tests and treatments, but also clashes with school, lack of understanding of the environment, social isolation from peers and depending on if a school director happens to frown upon alternative treatments. They now experience how vulnerable they are, having their own business instead of a job. Lyme recovery proves to be very unpredictable.
Elma (41) and René (44) have three children: Sharon (13), Nikky (10) and Wesley (7). They live in a village in the middle of the Netherlands. René has his own installation company since 2006. He specializes in placing bathrooms. Elma herself worked in a care home as well as at an event location, but now that is impossible given the situation of her children. For at least two of their three children have Lyme and are at home most of the time. Going to school or playing outside is hardly possible anymore. Elma and René hope that their story will help other parents, especially to trust their own intuition. Elma told me that for her, my book especially was a confirmation of what she already knew. That recognition caused her to investigate and find the best treatment for her children, while also providing information to other parents with children with Lyme.
Wesley is mostly suffering from a very low energy level. Now he is able to go back to school until lunchtime, but a few months ago this was impossible. Yet now he is doing better compared to last year, when he also had severe headaches. His eldest sister Sharon says this was the worst for her to witness, when Wesley was so sick. According to Elma her other daughter Nikky actually had her worrying all her life. It seems that she was born for misfortune.
How did Wesley and Nikky get infected with Lyme disease?
For Wesley the infection seems clear, because he had a tick bite in September, 2013, during a school outing in a forest. Three days later Elma found a tick in his navel. Elma saw it when he stretched and first thought he had something fluffy in his navel. This proved to be a tick. Two weeks later a clear red (EM) ring appeared around his navel. Aside from the mentioned lethargy and severe headaches, he suffered from constant colds, pain in his legs and arms, night sweats, insomnia and severe nightmares. In September 2013 he was diagnosed by the GP with Lyme using an ELISA blood test.
Nikky might have been infected by a mosquito bite in August 2014. She also had an equally clear ring EM, but the doctor immediately waved Lyme away as impossible. Because of Elma’s insistence that Nikky would be tested for Lyme disease their GP complied, again using an ELISA blood test. But this test gave a negative result. So the doctor concluded that Lyme was out of the question. Now Elma thinks that Nikky has had Lyme much longer, and that this mosquito bite has been a reinfection because her old symptoms have become worse since September, 2014. A therapist eventually found Lyme using a Live Blood Analysis, after an earlier LTT Lyme test (see Chapter 10 for each test) in Germany was also negative.
Via the pediatrician, many doctors have been trying to figure out for years what is wrong with Nikky, but none of them had any idea. Since infancy, Nikky already suffers from concentration problems (once the label ADD was stuck on her, which was later withdrawn), “brain fog”, tantrums, mood swings and slurred speech. Later she suffered from pain in her legs, feet and back, had a loss of muscle function, muscle cramps, headaches, abdominal pains and oversensitivity to electricity, light and sound. She is too tired for a young child and restless. Her parents have to carry her down the stairs every morning and Nikky has trouble sleeping due to nightmares. She suffers from nerve ticks: uncontrollable coughing, swooping eyes, deep sighs and convulsions of her head. She can also have violent tantrums. Her mother tells me that during these tantrums, Nikky could squeeze Elma’s arm so violently hard that were bruises on it.
Elma says she always knew this was not the real Nikky. She asked her once, subdued after such a state, to try and squeeze her arm as hard. “But I can’t do that, mum!” Nikky exclaimed. For these tantrums, they consulted the Child Psychiatry Department at the Utrecht Medical Center, where the difference between her verbal IQ and performance IQ was declared as the single cause. The fact that Nikky could express herself so hard verbally would be the explanation of her tantrums, according to experts. But Elma wonders whether this is the case, based on the new information about Lyme she found this last year; knowledge that was already known in psychiatric circles in 2002. At the end of Chapter 8, I will elaborate on possible psychological effects of Lyme disease, because it is often used against patients and it is therefore important to appreciate this.
This is what Wesley himself says about Lyme, “What I think of Lyme disease is that it is super dumb. It’s annoying to always be tired and in pain. It’s annoying. I have pain in my ankle; something is stabbing at my heart and hurting my eyes. I really like school, but I do not like it that I cannot go all day. I have great friends who do not like that I’m sick. Sometimes I’m angry that I cannot come out to play. I often lie on my bed and then my mother closes the curtains, so it is quiet. I have a dirty drink, but afterwards I get a tasty strawberry. I think that the drink is going to help and that I’m getting better. Nikky and I understand each other, because we have the same.“
Nikky prefers to express herself with a poem, because she really does not want to think more about Lyme than she already has to.
This is my story about lyme.
It is no secret.
It is not nice at all,
It makes me very sad.
My story is this,
I am not healthy.
I”m very tired,
It’s all too much hassle.
I have a lot of pain,
That’s not nice.
I spend all day inside,
I want to win from the lyme.
I cannot play with a child,
This is what I think about the lyme.
I hope I will be better from the medicine,
Hopefully lyme is short.
Is Elma sure Lyme began when Wesley was six?
Elma thought at first that Wesley’s Lyme infection started last year after that tick had bitten him in his navel. Now she is no longer sure. Partly because of the information she found on the Internet and in this book, she started to remember. The medical history of their family turns out to be a very long and strange one indeed. But if strange things last long enough, without a clear explanation, they seem to become normal soon.
Maybe that was also what struck me most during the interview. On the one hand how much people can adapt under harsh conditions. But also how those circumstances limit the imagination of what is actually normal, or how things once were. Maybe that’s our protection mechanism to continue and to not feel too much how painful something is.
René pondered this question after a while and then said that if he compares the overall energy level of the five family members against that of their peers, there really must be something wrong for a very long time. But if he comes home at night after a job his energy is also so low that he can hardly think any more about issues like this and will use the TV as a distraction.
What about the other three family members?
Their eldest daughter Sharon now also begins to wonder if she can have Lyme. Not only because the number of manifestations of this strange disease is so versatile, but also because now she knows that one does not need to have had a tick bite with a red ring. Sharon has some obvious symptoms of Lyme too. She is often tired, has weak joints and previously suffered from anxiety disorders as well. She tells me that she also had a tick bite in October, 2014, during a school camp. I find her skin color very pale and her looking much too tired for a girl of her age.
René says that his concentration is so poor that he can barely read. He did try to read my book but did not succeed. The letters danced before his eyes and his head is almost always foggy. A year ago, he hit his arm and that injury has never recovered. He also has regularly inflamed and swollen knees and he is often tired. He works hard on assignments and is happy that they always go well and that he never receives complaints about his work. During our interview Elma is sitting propped up against some pillows with a backache that resembles a hernia, extending to both legs. She can barely walk and is very tired. She went to the doctor, but he could not find anything. So according to him it was nothing.
After my question whether Elma and René also consider getting tested for Lyme disease, I see this frightens Elma. She says that she considered it for sure, but is actually afraid to find it. Because then to her it is almost certain that she infected her own children. Not only Nikky and Wesley, but Sharon as well. And then she has perhaps been infected by her own mother too, who has recently been labeled with “fibromyalgia” as a diagnosis for the pains she has been having for a long time.
Does this mean that Lyme disease is contagious through the pregnancy?
Indeed Elma has discovered that Lyme disease is transmittable from mother to child (congenital). Elma is deep down actually pretty sure that her children got it from her. The chances are high that she has gotten it from her mother.
The fact that Lyme infection is possible through pregnancy has been scientifically established 25 years ago. But still this knowledge has not penetrated the general public, because most doctors neither know such information nor do governments disseminate it.
The full version of Elma's story can be found in the Priceless e-book 'Shifting the Lyme Paradigm; the Caretakers' guide through the Labyrinth'.