I'd like to introduce you to Teike, he is a Lyme patient from the Netherlands. Sometimes in the United States we think things are better in Europe, but Teike's story is very similar to what many of us have experience in the United States. He went undiagnosed and was refused proper treatment while the disease progressed. Teike has taken his experience and created a website called Lyme Basics, which has interviews with top doctors, as well as, excellent scientific information on Lyme and co-infections. It's clear from this interview that Teike has done his research.
Trigger warning: Teike discusses suicide and suicidal thoughts.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
My name is Teike van Baden. I am currently 30 years old and I contracted Lyme disease in 2009 when I was 21 years old.
Before I contracted Lyme disease I was attacked by a neighborhood cat. From this attack I developed classic "Cat Scratch Disease" (caused by Bartonella). Fatigue, fever, chills, swollen lymph nodes, and general malaise were the main symptoms. I was managed with 5 days of azithromycin and I recovered considerably over the next 6 months. I still had some lingering fatigue, muscle pain, and exercise intolerance but I felt recovered for the most part.
I worked as an audio-engineer and did an internship at an outdoor theater company. This theater was located in a park that was also used for outdoor recreation. I crossed a small path with lots of high grass daily. The park was home for many rabbits, small rodents, deer, and birds. In May of 2009, I spotted 3 attached ticks during showering. I found one adult female attached in my belly button already engorged, and 2 nymph ticks—one behind my ear and another under my armpit.
Within 2 weeks I developed a spotted rash and small bumps all over my back that became lesions. My earlier Cat Scratch Disease relapsed and I developed swollen lymph nodes again. It also caused a condition called vasculitis. I felt severely ill with a lot of agitation, outbursts of severe rage, muscle pain, tremendous fatigue, and a bad headache that I never experienced before in my life. Within another 2 weeks I developed a red circular rash around my belly button that expanded over another 6 weeks. After that point the rash started to fade.
I had visited my general practitioner with these vague complaints but I didn't understand that these came from the tick bites. My general practitioner did not ask about any insect bites and suggested that I might have a burnout from traveling a lot, working 6 days a week and a lack of sleep. I went to bed for 3 months in the assumption all would improve and I would fully recover.
This did not happen. I was unable to exercise, do my job, continue my studies and have a normal life. My mother was diagnosed with chronic fatigue syndrome and so I thought I must have developed the same mystery disease. I knew there was nothing they could do to treat chronic fatigue syndrome so I didn't bother going back to my general practitioner.
It was 12 months after the tick bites and at this point I was getting worse. I developed word finding problems, concentration problems, and my ear started ringing. One day I woke up and the right side of my face was paralyzed. I thought I had a stroke because the right side of my arm also felt numb, and I lost an important part of my hearing in the same ear that developed tinnitus earlier.
I went back to the general practitioner who tested my reflexes and some other neurological functions. He told me my reflexes were delayed and from what I told him he suspected multiple sclerosis or another autoimmune condition so I was worked up by a neurologist.
I started having depersonalization and paranoia. I understood that I was experiencing mild symptoms of psychosis but I was too afraid to tell the physicians I was seeing. I intuitively understood that by telling them it would be very likely that all my physical symptoms would be ignored in favor of a psychiatric diagnosis. Looking back my intuition saved my life.
The neurologist did an ELISA test which came back inconclusive. He asked me about tick bites and remembered everything started after these tick bites and made a connection. I showed him the skin on my hands that became paper-thin, red-blueish of color and was painless. He wasn’t concerned about this skin problem and because my test came back inconclusive for Lyme disease the neurologist said I didn't have Lyme disease and that my MRI looked fine. He said I didn't have multiple sclerosis, so I must be burned out, and he sent me home.
I was relieved and at the same time sad. How could they think my symptoms were fake or a result of psychological problems? I did a very thorough analysis of my thoughts and personality with a psychiatrist who didn't think my problems came from a psychiatric condition and asked me to pursuit further testing to find out what was wrong.
I went to what you would call an LLMD in the United States who I told my story of bizarre symptoms. He did a WesternBlot that came back positive for Lyme disease, even according to the standards set by European health authorities. He started treating me with a combination of doxycycline and azithromycin in pulses of 3 weeks. I made a lot of improvement but in every week I didn't take the antibiotics I would relapse and lose all progress that I made in the weeks before.
On the basis of my positive WesternBlot I found a doctor who was willing to treat me with ceftriaxon for 21 days. My most disturbing neurological symptoms and psychiatric manifestations cleared, I regained my personality before my illness and the skin that turned bluish purple and became thin recovered. The doxycycline and azithromycin were not strong enough to accomplish this.
After this treatment I did great for 6 months, but then I suddenly relapsed. I went back to a hospital in France. I have had friends from holidays and one of them became an infectious disease doctor who believed me and followed the scientific debate on Lyme disease. He told me, "They are denying a lot of evidence." He performed a lumbar puncture and found I had pleiocytosis, an indication of a relapse of brain infection. He also found high levels of antibodies against Borrelia in my spinal fluid and in collaboration with a microbiologist they cultured Borrelia from my spinal fluid.
I was retreated with 20 weeks of ceftriaxon and azithromycin. I have not had any severe adverse reactions and this treatment helped me recover to 99% pre-illness. After this treatment no objective evidence of persisting Borrelia infection was found.
I did relapse with fatigue, neuropathy, insomnia, lesions, and minor symptoms so we performed a blood culture for a Bartonella infection. Other co-infections were ruled out by good testing that was not available in a hospital setting.
We had to think about the situation and ask ourselves: how can we prove to ourselves enough that these other infections are gone? We used research-level tests, direct microscopy, and culture methods after reading a lot of the literature on these tickborne infections and could state with a certain reliability that I did not have Babesia, Ehrlichia/Anaplasma, Rickettsia, Q-fever, Brucellosis, Tularemia, or other infections spread by ticks and that my ongoing symptoms were not caused by autoimmune or auto-antibody syndromes.
What hurt me was that I paid for these tests. These were not commercial prices but prices for what performing these tests and the materials used in the laboratory actually cost and despite this, the prices were high. I did reach out to a national research center for tickborne diseases, but despite being able to prove that these Lyme tests are no good, even in late stage of the disease ánd persistence of Borrelia after an IDSA recommended treatment for neuro-Borreliosis they did not want to see me because my case was not scientifically interesting enough. I ask myself what are the interests of such research centers if they do not find a case like mine particularly interesting. Maybe my case is just an inconvenient truth.
So after the relapse of minor symptoms we performed a culture for Bartonella. After all other causes were ruled out and we were able to culture and isolate Bartonella Henselae from my blood despite these long-term treatments with antibiotics.
We also did a special test to determine the antibiotics susceptibility profile of this specific strain and we found it was resistant against all tetracycline and all macrolide class antibiotics. I did respond very good in the past against these antibiotics, so Bartonella must be able to rapidly cause resistance and this is also demonstrated in the literature.
My general practitioner suggested that my ongoing symptoms were a result of PTLDS (Post Treatment Lyme Disease Syndrome). But I was stubborn and I was put on a combination of antibiotics that Bartonella was susceptible for by my LLMD. I responded within 6 weeks and I recovered 99% of these lingering symptoms. This further demonstrated that PTLDS should be a diagnosis based on ruling out other possibilities instead of the other way around where PTLDS is a label that stops doctors from looking into your condition. In my case the persistence of Borrelia and/or coinfections caused my lingering symptoms, not PTLDS.
Today I am still looking for the scientific answers that might help me recover 100%, because it was shown that my Bartonella infection relapsed again causing a reappearance of symptoms. If science is not interested in this topic and governments are actually impeding the process of finding solutions for tickborne infections I am going to fight for my own case together with friends in microbiology and health care to hopefully find answers that might help other patients.
You created a website called Lyme Basics. Tell us a little bit about the website and what you hope to accomplish with it:
In my fight for health with regards to my own illness I learned a lot from discussions with microbiologists and compassionate physicians. At some point I became what you could call a "citizen scientist" with my own illness as a possibility to learn. I am in my 1st year of microbiology. I started studying after I contracted this disease. When I finish I hope to publish my first case-report together with my treating physician.
It took me numerous hours of research and reading the literature to understand what is actually going on in my own body and I wish there was a website that put all these scientific studies together. These studies are out there but nobody was connecting all the dots. I tried to achieve this by making clear cut articles about the different infections and mechanisms that are suggested to play a role in the disease process that is the result of all these tickborne infections.
I also interview scientists and doctors that are actually trying to improve things for us. I’ve seen that prejudice, lack of character, and just plain conflict of interest are the main reasons why people are abandoned by their government, health care and even friends and family while they are slowly dying from these tickborne infections. I like to call a duck a duck and a cow a cow. I call it for what it is and this field of study has been neglected leaving patients suffering for decades. I think it has been more convenient for certain individuals with special interests to deny the situation rather than to find a solution.
How have your family and friends reacted to your illness?
I lost my mother due to suicide 4 years before I contracted Lyme disease. My mother was a wonderful and highly intelligent person who I think died of Lyme disease and tickborne infections herself. My judgement says she was misdiagnosed with chronic fatigue syndrome.
My mother was a high school teacher and had 3 dogs. She was in the woods every day and trained their dogs for hunting. She must have had 50 tick bites per season. Her "chronic fatigue syndrome" consisted of severe fatigue, migratory pain, swollen knees, skin problems, allergies, liver infection, kidney infection and at some point neuro-psychiatric manifestations after which she committed suicide.
She was never tested for Lyme disease. I never understood what she was going through, but I knew that it was real and not a psychological disease. She had a rough life and as a kid I wasn't always the perfect son, but I love her and I understand what she was fighting. She gave me fighting spirit, and I think, today she would be proud of me. I cannot write this without having to cry.
My other family members have a little bit of trouble understanding all the "Lyme stuff." This is how they call it. They have normal lives and are not concerned with all the mess that is our healthcare system. I think they understand on a more basic level that the financial stimuli in the healthcare system is broken and that pharmaceutical companies act like the Mafia did in the 1930's. I am glad they are not understanding this on an expert level this is a sign that they live healthy lives within society.
I don't talk to my family members on a daily basis but I am sure they have enough character to make right what is wrong in their own professional lives.
What is the one thing that you have found most helpful in treatment?
At some point you have to learn to accept that you have got a disease and that science is not yet advanced enough to find solutions to all our problems. What helped me most, besides the right pharmaceutical drugs is embracing my own mortality. It is satisfying to know that I do not have to go through this for all eternity.
What do you want people to know about Lyme disease?
All these different crises on the planet, climate crisis, economic crisis, refugee crisis in Europe, financial crisis all have one common denominator: the crisis of our human conscience. The idea that evolution is a process of competition, I find that rather fascinating while at the same time some species survive by working together. Certain human beings think it is appropriate to attain as much creature comfort as possible even if this means others have to suffer for their comfort.
It would be easier to find common goals and work together on improving the world and our societies if we are able to overcome this competitive thinking and understand there are no special interests. In the end we are all one big family of human beings on a small planet in an unimaginable amount of space. Lyme is just one of those topics that are exemplary of what can go wrong when our worst characteristics are able to define something. I don't think we need conspiracy theories anymore. Reality might be just as bad.
What are you most grateful for in your healing journey?
Before I understood what was happening to me I stood on a bridge with my last strength, ready to commit suicide just like my mother. I didn't. I went back home, survived and met beautiful people that suffer from the same illness. I think I feel more connected today.
Not only did I suffer tremendously and still do from time to time, it also brought out the best in me. It made me stronger. I now appreciate small things that I did not notice before and Lyme disease transformed me in unspeakable ways. The only thing left is to find another person to share these secrets of life with. Due to disease I missed out a lot on relationships and I really hope to find that wonderful woman who is able to teach me a thing or two about life that Lyme disease couldn't teach me.
Do you have any advice for the newly diagnosed?
What you are experiencing is real. It is not all in your head and at the same time the Borrelia bacteria might actually be in your head. Don't trust a negative test. We are able to test for 5-10 pathogens that can be transmitted by ticks with very unreliable tests.
These test results sometimes only create a false sense of security. If you have symptoms that start after a tick bite the real puzzle starts. Make sure you find the right doctor who is able to differentiate between your symptoms and your infections. You need to form a team and you need to be able to trust his/her medical advice.
Unfortunately, when it comes to tickborne infections, there are a lot of doctors who've got it wrong. These are not only IDSA doctors; unfortunately also ILADS doctors mess up patients from time to time. If I knew what I know today, I would have made different choices.
Do you have a role model in the Lyme community? Who and why?
I have a really high regard for a couple of scientists. I started studying microbiology and because of that I like to follow the research from Ying Zhang from John’s Hopkins University and Ed Breitschwerdt who put the genus of Bartonella on the map. Ed showed the world that this is a medically relevant species. Bartonella and Lyme made me rethink the whole Pasteur versus Beauchamp discussion. Is it the pathogen or the environment causing the disease? Maybe both perspectives are right and not mutually exclusive of each other. Of course, the perspective of Pasteur is more convenient for the creation of institutions, procedure and protocol so Beauchamp’s perspective is just an inconvenient truth. Microbiology is a challenging field of study and what these scientists have achieved, while under staffed and with minimal budgets, gives me hope.
I also admire psychiatrist Brian Fallon from Columbia University. He has been a voice of reason in this debate for many years. He always took into consideration research that was ignored by his colleagues when it didn't fit their view on the disease and he too continues to work with a lot of commitment to further the research on Lyme disease and associated infections.
But outside of the Lyme community I have an even bigger role model: Manly Palmer Hall. He was a Canadian writer and mystic. He was an authoritative scholar on topics such as philosophy, religion, mysticism, and occultism. While some of these role-models taught me a lot about science, Manly Palmer Hall taught me a lot about the process of thinking itself and the nature of mankind.
My biggest role-model is my mother: She taught me how to love, which revealed itself the deepest and the strongest in the process of missing her and to quote my favorite rap star J. Cole: "There is beauty in the struggle and ugliness in the success."
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.