"Sometimes good things fall apart, so better things can fall together.” - Marilyn Monroe
I have known Ben only in the virtual world. We have communicated through Facebook, Skype and email. He is one of the volunteers at the On Lyme Foundation; at least during those times when he was in any shape to do something. The first time I wanted to plan a conference call with him, he grinned and said he could not promise me if he would be awake at the suggested time. Being puzzled by his answer I asked him if he could not just set his alarm clock. No, he said. He explained to me that if he sets his alarm too early in his sleep cycle, his nervous system gets so overloaded that he becomes completely paralyzed for at least an hour.
Ben’s neurological Lyme expresses itself as vertigo, dizziness, balance disorder and motion sickness. Ben says I feel like there is a lock on my brain. Like I have been drinking. It makes Ben feel like he is hung over yet he has not consumed alcohol. Ben could also not accurately estimate height and distance. When he went to Paris he was not able to climb the Eiffel Tower because his legs were not strong and they were too wobbly. Ben also shared with me that he could no longer tolerate loud and sudden noises such as the doorbell, fireworks, electronic beeps or barking dogs. Ben also found that if he has not rested enough or when his senses are being overstimulated, he gets spasms and sudden paralysis. Still he has chosen Marilyn Monroe’s quote for his chap- ter, which indicates to me he is still positive about his future.
I had to make an editor’s decision about this chapter (in Shifting the Lyme Paradigm, which is writen for caretakers instead of for patients). After our interview I noticed that Ben became very upset when I would start to make changes in this book from the original draft. Whenever I would shorten sentences, omit details that I felt would distract you as reader or change the order of paragraphs, he would feel that it no longer made sense to him. I decided to leave it exactly as the story was told to me. If you find it hard to follow, just remember that this can be part of listening to someone with neurological Lyme.
Who is Ben?
Ben was born on June 25, 1978, 42 minutes after midnight in Tiel, the Netherlands, on the same day as his grandfather was born. He tells me how his mother hated this so much, she even wanted to have the date changed on his birth certificate. However his father decided he had to be named Benjamin after his grandfather. Ben tells me he is quite alright with the name Benjamin, but he would prefer not to have his father’s last name. To him too many trauma triggers are connected to that name. He explains to me what he thinks is the difference between a dictator and a tyrant. A tyrant (his father) only pushes his will onto others for his own sake, while a dictator (his grandfather) can be stern yet also just, with good intentions towards those he cares for.
His grandparents raised Ben during the first eight years of his life, because his mother was too ill to care for him. She had failing kidneys at the age of thirty, caused by Henoch-Schönlein syndrome. She went through two years of dialysis, then got a donor kidney and had to swallow sixteen different kinds of pills daily ever since, to keep that kidney and her system up and running. The kidney kept functioning for 23 years (!), while all her other organs suffered as an effect of that much medication. As a con sequence she had open wounds on her legs, her gall bladder had to be removed, she had open heart surgery twice, artery problems, warts, hair loss and cancer in her throat and twice in her uterus. At the end of her life, she hardly told her husband and son anymore about her latest complaints. She had a very non-alarming way of informing them, in order not to burden them more than she already felt she did. When Ben was 27 years old, she passed away on April 25 2005, after having been ill for 25 years. So Ben’s whole childhood was already filled with diseases and medical challenges.
The doctors gave up on her eight years before she actually died. This prediction had an emotional impact on Ben, making him want to stay close to her and maintain the relationship with his father, which he would otherwise have broken much earlier. He did not want to cause his mother any more stress than she already had. Now he can see that this self-imposed obligation had a huge impact on his own immune system. Ben’s own symptoms started when he was 8 years old. He went with his mother to her cardiac rehabilitation, which he could join for fun. During one of these exercises he fell hard on the back of his head. After a heavy concussion, he lost all his childhood memories previous to that day. The memories, also those of feeling healthy, never returned. At that same age he started having juvenile periodontitis. This is an infection of the gums, causing them to retract from the teeth. In retrospect this was also the first clear Lyme symptom. He knows this now, because a friend of his is a dentist. She had seen the spirochetes under the microscope, after having had an exam question about it.
What happened at school?
Ben performed very well at school. He especially liked math and was outperforming everyone. After moving to another city at the age of ten, he suddenly could not do any math anymore. By then he was already experiencing pain in his joints, tendons and muscles. Around the age of fifteen, he started to get more complaints and was diagnosed with Pfeiffer, which later was reassessed as the Epstein-Barr virus. At school and at home he could hardly focus while reading nor could he concentrate on anything else for long anymore. Before this period he told me he would devour books. Yet now he could not read more than a few pages before the letters started to dance and he was lost in the words. This made him stressed and depressed. His first visit to a psychotherapist followed and the doctor blamed everything on stress. He left his parents’ house to live with a friend for a while, because his father didn’t understand it at all and reacted in his default violent way. Ben tells me both his father and his aunt often had tick bites and they both display the whole range of Lyme symptoms. But they were too headstrong to have themselves tested. He is out of touch with both of them now, ever since his mother passed away. He feels this is much better for his general health and stress levels.
With the friend he lived with, he went on vacation to the USA and most likely got infected with the Borrelia Garinii in Oregon. There is a wide array of woodlands throughout Oregon. To Ben it is now quite logical that there is a relationship between abuse and Lyme, since they are both undermining the immune system. He tells me his family background was one of emotional abuse, because his father structurally talked down on both his mother and Ben, proclaiming them both worthless. Since Lyme is a neurological disease and emotions are generated in the brain and transported via the nerves, to Ben it makes sense this is how his Lyme complaints show up.
During the time he fell on his head at the age of eight, kids started bullying him at school. He developed breathing problems, on top of the asthmatic bronchitis he already had as a younger child. Later he discovered this type of COPD is often related to Lyme. So he still does not know if he was infected with Lyme at a younger age or maybe even from birth. He also learned that a leaky gut is related to high muscle tension in the pelvic area, which can also be related to Lyme, or if it gave Lyme a chance to get a hold on his system. He finished high school and started studying in Nijmegen, in order to be as close as possible to his ill mother. When he was operated upon to remove all his wisdom teeth at once, suddenly his depression and some of his bowel problems were gone.
When he was around nineteen he was supposed to go to a mental health clinic for a period of six months to try and have mul- tiple health issues sorted out. Since they had a waiting list, he had to go to weekly group therapy sessions to stay on the list. He found out he was very sensitive to other people’s emotions and would assimilate their issues on top of his. Every week he was told that, "he had to do it by himself", so he quit the weekly sessions and got his own apartment. He started taking Ayurvedic medicine and received Ayurvedic oil massages and Shiatsu massages. Almost at once many complaints disappeared. He is sure leaving the stressed home situation helped him feel better too.
In 1999 he restarted his studies in Business Communication, which ended with a second burn-out because of the workload in combination with his decreased ability to read and focus. His knees started to become locked, his body temperature would vary dramatically over the day and his hands started to cramp. He would randomly also get searing pains in his tendons.
By that time he had already received a whole list of diagnoses. Among them were OCD, PTSD, Borderline, phobia and many others. His concentration deteriorated, but to him this was starting to become “normal” by now. At first it only showed up as a problem of focus. He would go to his university classes but would not be able to read the books about it at home. He would be too exhausted from all the input.
In 2000 he had his first intimate relationship, which was too intense. He went to a psychologist, who was the first and only one of the four that he visited who was any good. She worked with a Jungian approach. She told Ben he was holding on to people that were unhealthy for him. So on Mother’s Day 2001, he told his mother that he had to distance himself and that he actually never wanted to see his father again. He had no idea how he could do that, but he tried anyway. He also kicked his ex-partner out of his house. After some months he had to give in to the guilt as his mother’s health got worse.
In August 2001, he was in Prague and felt his partner was cheating on him back home, which proved to be true when he came home. He broke up and ended up in the next dramatic relationship right away. His new lover was heavily addicted to marijuana and the relationship ended in Ben sending him to rehab, while losing his best friend in the process. He tells me this obviously did not do any good to his health. On top of that his employer suddenly got cancer and died. He worked in an interior design store, which he found a really great place to work at, with friendly colleagues and great overall atmosphere. Then the shop was sold to a new owner and Ben was out of a job.
Ben felt lost and started looking for a job at an employment agency for temporary work. He is still grinning about the fact that even though he could not finish his studies, he was now in the same job as his former classmates (that had finished their studies) around that time. This career move ended up in a power struggle between his agency manager and his district manager, in which he got caught between. He was fired again and he got his district manager fired as well, although it did not get him his job back.
Being interested in spirituality and more specifically in how spirituality is the cohesive structure behind many social structures, he decided to start studying religious studies at Nijmegen University in September 2002. Again he found a part-time job as a job employment agent at an agency he really liked. So he studied full-time, worked part-time in three different locations and spent the rest of his time at his mother’s side at the RadboudUMC hospital, where she was more like a permanent resident than an oc- casional guest at that time. This RadboudUMC hospital is now known as the Lyme expertise center of the Netherlands, but was not yet when Ben’s mother was there. He discovered that traveling was becoming too taxing on his body. He could not travel by car for more than one hour and flying was completely out of the question. After four months he could not think straight anymore and had pain all over his body. So he resigned his part-time job around Christmas, when his mum was in the ICU again.
During the Four Days Marches International Festival, in July 2003, Ben met his current life partner and caretaker. Shortly af- terwards he could not walk anymore. His knees were completely locked. That progression took about four months, so his new partner had to take care of Ben completely. Ben was locked up in his little 43m2 / 51 square yard apartment all day. He could not cycle to university anymore, so he had to give up his studies. >Autumn 2004, Ben had to sell his apartment because he had no income at all and could not get a student loan anymore. He had to beg his mother for money to buy food. His partner, who lived in a place in which he really did not feel at home, also wanted to move. So they rented a house together in a village near Nijmegen, to lower the cost but still be near to the city they loved and where Ben’s partner worked.
When did Ben realize he had Lyme?
A short while after they had moved into their new house in September 2004, Ben and a next door neighbor built an outdoor run for the cats in the back garden. It proved to be too much for his body and that night he got an attack. He became completely paralyzed and nearly choked on his own saliva and the slime that came out of his lung system. His partner saved his life by checking up on him in time. Ben now calls this incident ”a wakeup call”.
On April 25, 2005, his mother passed away and a new chapter of drama started. His father set the conditions under which Ben was allowed to come to his own mother’s funeral. His partner and close friends were not welcome, so he did not go to either his mother’s condolences ceremony or her cremation. He had his last moments with her in the hospital they had spent so much time in. He tells me this was a fitting place for goodbyes, so he has no regrets about this choice.
Shortly afterwards he had to fight to get government support. After struggling without any income for a year and a half, he got a 45/55% disability assessment in 2006. He never thought about fighting this decision, since he assumed he would be able to work again soon. He visited a local Mesologist, who worked with a SCIO Quantum Biofeedback machine. He visited her for two and a half years. >There he found out about the Epstein-Barr virus and that he was infected around the age of sixteen. The Mesologist found heavy metals, molds, fungi and parasites. She started to treat those co-infections. She did test him positive for Lyme, but wanted to start with the other things she found and never paid much attention to Lyme itself. It cost him a fortune, since nothing was covered. Finally his partner told him to stop going because he could not cover the costs any longer.
Although she found improvements in the measurements, Ben did not feel better. In retrospect he thinks that she did good work, by cleaning up the co-infections first. He also visited his GP, to get formal recognition for the government’s Social Services. His GP sent him to a psychiatrist. Although Ben’s first impression was not a good one, the first question the psychiatrist asked was if Ben was ever tested for Cat’s Claw Disease, a.k.a. Bartonella. He told Ben he had read his file, frowned and said, "These diagnoses make no sense. And you have already done and tried so much, I bet you are tired of talking and do not want any more cognitive therapy?" Looking back Ben realizes that the psychiatrist had asked exactly the right questions, evading the L-word, so he would not lose his job.
The psychiatrist sent Ben to a health center in the middle of the Netherlands, in Zeist. They were specialized in psychosomatic long-term health problems. He had already been in touch with the Dutch Lyme Patient Federation (NVLP) to ask them what steps best to take next. He also already connected to some people who had Lyme on the Internet.
Who did he go to?
Ben tells me about an assortment of bad experiences with “helpers”. In Eindhoven, he first visited a Biophoton and Bicom therapist. Ben tells me she was really insecure and basically had no idea what she was doing. She just seemed to press some buttons. But she did find all types of Borrelia spirochetes as well as co-infections like Mycoplasma and Babesia. She found all except the Burgdorfi. Now Ben understood how and why he had wrecked his knee even more. A physiotherapist had instructed him to strengthen his knee muscles, based on the GP’s wrong diagnosis of “retro patellar chondropathy”. Now having the right diagnosis of Babesia, this proved to be the most stupid thing he could have been instructed to do. In Zeist they had told Ben to first deal with Lyme, but Zeist was too far for him to travel anyway. They did give him an official referral to a Lyme expert that could prove important for his government endorsement.
After consulting this therapist for a year, she kicked him out, officially because she did not have time for him. So he let a friend call her, pretending she was a new client, and the therapist could make an appointment the next week. So Ben concludes she just did not know how to treat him. He went to see the daughter of the Lyme therapist that the center in Zeist had recommended. This daughter proved to be yet another very bad, corrupt and expensive experience. The woman was a convicted fraud that sold fake medicine she relabeled herself. He is happy he only went to see her three times.
In 2011 Ben had a Live Blood Analysis done, in which Lyme was made visible for the first time. Again this therapist was absurdly expensive to Ben’s standard of living and his office was too far away from Ben, who by that time could hardly travel anymore.
One of the Internet contacts recommended his current therapist to him. This therapist also noticed the same infections that were found before: the Borrelia types, Mycoplasma, Babesia, Ehrlichia and Rickettsia. The therapist is working with a self-made Rife frequency device. He measured with the Vega test and is a registered Classical Chinese Medicine therapist. Ben tells me it is important to distinguish between CCM and TCM. TCM means Traditional Chinese Medicine, which originated only in the 1970’s. CCM is as old as Ayurvedic medicine.
Ben did want to get tested at ProHealth in Weert in the Netherlands or at Augsburg, Germany. But again he could not afford it, without the help of an MD or his GP putting a stamp on the paperwork. A GP’s referral to the Lyme polyclinic at RadboudUMC seemed useless at this time, because they only treat acute Lyme cases. Since little to nothing was covered by his insurance, he only had limited options of who to go to.
How is Ben doing now?
Ben is now mainly focused on dealing with emotional trauma issues using EFT. He considers using EMDR soon. He wants to do this under supervision, because he is afraid to “drown” in what might come to the surface. This means Ben is dependent on whether the facilitator has time. Recently Ben found out he has a “horseshoe kidney”, which is pressing on his main artery in his belly. This in effect, is causing bad blood flow, varicose veins in his scrotum and pelvic muscle tension, which triggers the leaky gut syndrome. He feels like everything revolves around his kidney and things are going around in circles. Having a kidney problem also triggers his memories about his mother’s medical history.
There are improvements. He can walk longer distances again. He can help his partner in their household, by cleaning and vacuuming. He can fly in airplanes again now. He did not have those attacks anymore after taking magnesium and other supplements. He can work in the garden again, something he really liked to do before the attacks started to happen frequently. He has also been trying to rebuild some sort of social life, after being in social isolation for so many years. Being among other people, to feel a bit more human again, also proves to be a healthy step for him.
He tells me – and this is something that strikes me in many people with Lyme – that if he had over fifty symptoms before, he now has the ten main ones left. The half full glass.
Does he have a good doctor treating him now?
He already found that therapist mentioned in paragraph 3.8. Ben finds it reassuring to know that the therapist’s whole family has had Lyme and now they can all function again. This increases Ben’s trust in the therapist’s abilities.
Ben also finally found a real MD, a Flemish urologist that really seems motivated to help him! She took a risk by sending him to a colleague neurologist. Somehow the RadboudUMC has the policy that doctors cannot do this (refer internally). It eludes Ben as to why. He was already in that same hospital at their neurophysiology department in 2005. Yet the hospital now has introduced a new policy: patients have to start all over again if they did not visit the hospital within the previous year. Ben cannot see why this is helpful.
At my request he tried to count how many doctors he saw in the last 19 years. He thinks that he consulted over forty specialists and therapists. Almost none of them took Lyme seriously.
What helped Ben and what did not?
When I asked him what helps him, he understands my question too literal and answers "deep tissue, TuiNa, Shiatsu and Ayurve dic oil massages, infrared sauna and CCM acupuncture". Reminding him the book is being written for people who care about their close ones with Lyme, he laughs and thinks again what to answer. He tells me his reason to only talk with other people with Lyme is that they do not think he is crazy. Unlike many other people who have no idea what Lyme does with “Lymies” he is able to express his feelings without being judged. Then he also does not feel he is dumping his misery on people, who have no idea what being a “Lyme patient” implies. He does not want to be a burden to anyone that cannot handle all this baggage. To have these connections with other people means to him to come out of a deca- de of social isolation. Now he feels worthy again to have friends and love in his life.
He adds that since he is a highly sensitive person (HSP), he is very vulnerable to EMF. This happens with many people with chronic neurological Lyme. That means the internet is switched off at night, cordless phones are gone and he uses many gemstones and minerals to balance the energy inside the house. These products also filter out any unwanted frequencies coming from the outside.
What can I learn from Ben’s story?
What Ben hopes you get out of his story is that you do the reverse of what his life partner did. He told Ben he did not want him anymore. He tried to take away his hope for recovery. He asked him why he wanted to keep on living. Ben felt he regarded him as a “thing” with a disease and that he stopped relating to him as a human being.
When I asked the reversed question, Ben answers that he hopes you will take understanding, recognition and respect from it. Hehopes that you will be able to have the patience during the “marathon of Lyme”, as he calls it and to realize that Lyme is not something that can be easily fixed, that it can take years or even decades. He understands that partners and other people close to people with Lyme also have their own desires and frustrations. Yet he knows how important it is not to bring them home.
Ben's story can also be found in the Priceless e-book Shifting the Lyme Paradigm; the Caretakers' guide through the Labyrinth'