Netherlands: Lyme disease and other tick-borne diseases are real, not a joke
By Dominic D Smith
Groningen, Groningen, Netherlands
Horticulturist, Landscape Designer and Engineer, Education Ambassador, Mentor, Patient
Infected by: 3 ticks (Netherlands)
Diagnosis: Active and positive: Borrelia burgdorferi, Borrelia miyamotoi, Rickettsia, Tick-borne Encephalitis virus, Anaplasma, Bartonella, Ehrlichia, Mycoplasma, Chlamydia, Parvo B19, Epstein-Barr virus and Borna virus
Misdiagnoses: Stress, Psychological/psychiatric disorders
Current state of health: “Still undergoing treatment”
In my role as a Lyme education ambassador, mentor and patient representative for several organisations, I share my personal experiences and story related to this disease. I am hoping to inspire others and raise awareness among a wider audience. I have suffered from Lyme disease and co-infections from tick bites for over two decades.
In 1998, while doing study-related forestry work in the royal forests near Apeldoorn in the Netherlands, I was bitten on the neck by three ticks. After a few weeks I started to get complaints such as fatigue, headaches, and muscle pain. I went to my GP and reported the tick bites and my complaints, but since she saw no classic ‘bullseye’ rash, she dismissed my symptoms as stress caused by my study (this was a misdiagnosis).
A severe decline in health
In the years that followed, the complaints developed further: severe headaches, muscle pain, joint pain, heart complaints, cognitive complaints, visual complaints, and extreme fatigue. Both my GP and some specialists labelled these complaints as psychological (psychosomatic). In 2005 I could no longer work in the internet provider company I owned with my brother, I was bought out, and then my relationship ended.
I was in so much pain and so miserable that I attempted suicide. In 2005 I was admitted to a closed ward in a psychiatric institution. While I was there, I had severe epileptic seizures every day until I finally had to go to the university hospital. My parents urged the neurologist to do a scan.
They did an F MRI scan and FDG PET scan, along with a lumbar puncture and blood work. I was diagnosed with active and positive Borrelia in Liquor CSF and blood. But they said those were just antibodies. On the brain scan, they saw reduced blood flow in the mediofrontal cortex. They said the seizures were psychological, so they sent me back to the psychiatric institution.
Below: Dominic – Before Lyme, during treatments, and recovered
A second opinion
In 2008 I hired a lawyer; we got a second opinion from an independent neurologist, and he did a lumbar puncture and blood work. The diagnosis was active and positive Borrelia in Liquor CSF and blood, Neuroborreliosis. They did research on my heart problems. They sent me to a university hospital in Germany. After examination, I was immediately operated on for cardiac arrhythmias.
In the long run, things got so bad for me that when an outside working doctor saw me, he said to my parents “He’s on so many meds here, this will be the death of him. Get him out of here, he must go to the hospital immediately.” Once back in the hospital I underwent several severe treatments with Antibiotic therapy by infusion, and also orally for the Neuroborreliosis. But they still kept saying it was psychological.
Once back in the hospital in the Netherlands, they had to accept the diagnosis reluctantly, but this did not go well. I received a few more heavy treatments for Lyme, but after that the doctor was not allowed to treat me anymore, because he had already treated me more and for longer than is prescribed by the Dutch Treatment Guidelines.
“….the doctor was not allowed to treat me anymore, because he had already treated me more and for longer than is prescribed by the Dutch Treatment Guidelines”.
They started talking about conversion and psyche again, and still do to this day. In the past and in recent years I have been treated in the ICU. Each time in critical condition because of one suicide attempt, acute heart problems, multiple status epilepticus (series of grand mal epileptic seizures). A second opinion has shown that I do not suffer from psychiatric illnesses and disorders. I have been treated by a German doctor/specialist since 2015.
After extensive testing several times in various laboratories, I was diagnosed with positive and active Borrelia burgdorferi, Borrelia miyamotoi, Rickettsia, Tick-borne Encephalitis virus, Bartonella, Anaplasma, Ehrlichia, Mycoplasma, Chlamydia, Parvo B19, Epstein-Barr virus and Borna virus. I also suffered from real epilepsy, spasms, neuropathy, brain atrophy, asthma, heart and vascular cramps, cardiac arrhythmias, inflammation, osteoporosis and multiple allergies. In addition, it was found that I had high levels of various heavy pesticides, insecticides, fungicides and herbicides such as Glyphosate/Round-Up in my blood.
Below: Dominic’s epic journey from enjoying a Forestry and Landscaping career to severe illness, emergency
hospital visits, surgery, time in a psychiatric institution and finally, recovery.
Because they sent me to a psychiatric institution several times, and because it was always said that my health problems were psychological and conversion, I asked for a second opinion. The second opinion showed that I did not have psychiatric disorders.
I have undergone long and arduous treatments, as well as treatment with supplements and diet. Little by little I recovered. Little by little I recovered. Still I undergo treatments with several antibiotics, supplements, anti epileptic drugs, drug for my heart, blood thinner, drugs for asthma, drugs for osteoporosis. This disease has changed me and the way I work. Before I got sick, I worked for big money, I had dollar signs in my eyes. I was always busy and had no eye for other things. Now I volunteer for non-profit organizations. I share my story, inspire others, create awareness, education, advocacy. Now I share and give more than I take.
If I’m honest and realistic, I don’t think I’m getting better in the sense of being completely healed. I think the disease can be kept in sleep mode, using a combination of treatments, medicines, supplements, nutrition, exercise, etc. A medicine or vaccine would be nice, but these infections are complex, especially if you have multiple infections which complicate treatment. However, you should always stay positive and maintain hope.
What has helped me / helps me stay well:
Sleep: I get enough rest and ensure a good day and night rhythm.
Exercise: I try to get enough exercise every day, such as walking or cycling in the open air.
Diet: I eat no red meat, no dairy and dairy products, no caffeine, no sugar, minimal salt. I mainly eat vegetables, seeds, nuts, unprocessed oats, puffed buckwheat, pure 100% almond milk and yogurt, pure 100% oat milk and yogurt, soy and GMO-free meat substitutes (e.g. BeyondMeat), olive oil, shea butter, whole wheat sourdough bread, fruit, occasionally young non-oily fish.
During and after treatments I use probiotics and supplements such as multi-vitamins, Vitamin C Ester Plus, Vitamin D3, Selenium with Vitamin A/C/E, Iron with Vitamin C, Co-Enzyme Q10, Calcium/ Magnesium/Boron, L-lysine, Zinc, Resveratrol, Ginkgo biloba, Echinacea, Glucosamine, Cod liver oil, Melatonin.
To detox, I use Toxaprevent, Birch sap extract and drink plenty of water.
*(My doctor/specialist determines dosages).
Follow me on:
- Twitter: @dominicdsmith
- Instagram: @dominicdsmith
- Facebook: @dominicsmithnl
I work (volunteer) for:
- Ambassador and Mentor for the GLA Global Lyme Alliance, representing the Netherlands and Europe.
- Patient representative at the Dutch Tick Bite Disease Foundation.
- Committee Member for Lyme-Global coalition.
- Representative for the LDAA Lyme Disease Association of Australia ♥