So let me introduce myself first
My name is Esther and I was born in 1987 in the Netherlands. Before I got sick (I was 18 when I got sick) I was a happy girl with plenty of energy. I loved to party and go to festivals and I loved it to spend time with my friends. Also I knew at the age of 14 what I wanted to do with my life. Strange how one little tick can destroy all of your dreams.. and how it can turn you from an active girl in to someone who lives her life in and around her house..wandering through the woods with her dog and watching movies and listening to music on her couch..yeah I know, pretty boring! But I learned to appreciate the little things in life (cliché but true)...
How it all started
It all started in July 2005. I was on vacation in the Czech Republic. With a lot of friends we stayed at a camping. One day, we were sitting outside with a cold beer and suddenly someone said: “Esther! You have a tick attached to your leg!” and he went searching for a tick-remover. I thought, why are you in such a hurry, it's just a little tick....! I knew nothing about ticks.. the only thing I knew was that when you got a bullseye rash (Erythema Migrans, E.M.) after a tick-bite you should go see a doctor.. I never heard about Lyme disease and I never heard about other tick-borne diseases. So, my friend removed that little tick from my leg and I did not think about it anymore.
The years after the bite
A week after the tick bite I went to Prague to stay a few weeks with a friend who lived there at that time. I was there one or two days and I became ill. I had a fever and was in a LOT of pain, so I went to a hospital in Prague.. it was a challenge to let the doctor know why I was there to see him.. The doctor I had did not speak English, he only knew Czech or Russian.....and that was like abacadabra for me. But after a while trying to explain my pain, I got antibiotics for a bladder infection. And after staying in bed for 2 days I was good to go, I thought.
Then 2 weeks later when I was back home in Holland I noticed a red rash on my leg, the leg from the tick bite. So I went to my doctor, but he said that it was an allergic reaction to something, he said it was definitely NOT from the tick-bite.. So I believed him. Back than I still believed doctors..
In September 2005 I started at a new school. But after a month my study advisor said it was better for me if I'd quit. My health went downhill very fast, I lost a lot of weight and had infection after infection (bladder infections, lung infections, sinus infections, infections in my eyes), so I also thought it would be better to quit school and try to get my health back..
But in the years that followed quit school 3 more times, I had to let go of my dream to finish art school.
And I did not only quit school multiple times, but I had to quit a lot of jobs too. Since 2011 I was not able to work or go to school anymore. For several years I pushed myself to stay in school and stay working, because the doctors said I was fine.. but my body could not take it anymore.
The doctors, specialists and psychiatrists that I saw
From 2005 till 2012 (or from 2005 till now...) I went to the doctor a LOT. But I had a lot of different 'family' doctors, because I was moving from city to city.. But all the doctors said the same thing; “You are sick from stress, you need to find a house where you can stay.” So I believed those doctors, because I knew I had a lot of stress, that tick- bite did not come to my mind..
But because I kept going to the doctor, with different symptoms every time, one doctor did sent me to a psychiatrist, it was 2007. First I saw a psychiatrist who said I had a depression disorder. Than psychiatrist number 2 said; No, you don't have a depression, you have ADHD. Than another psychiatrist, number 3 said; No, there is nothing wrong with you, it's all in your head. You're just lazy and don't want to work or go to school.......I think it's Psychosomatic. So I did not go to a psychiatrist anymore, they all said something else and they all wanted to put me on all sorts of heavy medication. And I knew it was NOT in my head! So why would I take those medicines.. I didn't need them!
At the end of 2009 I developed Psoriasis and I had infections in my eyes again. Then I got a lot of pain in my hands, knees, hips and elbows and I lost a lot of weight again. Also I had sleeping problems and woke up bathing in sweat every night and I got a lot of neurological symptoms, for example: really bad migraines, numbness in my left arm en feet, cramps in my legs and fingers, forgetfulness, concentration problems, trouble finding words, blurry vision etc. etc etc.. also, during the day I had sweats and chills (shivering)..there was something very wrong in my body..
So I went to the doctor again. I had a new doctor, I'm still going to that doctor now, and he said that it was strange that I was in so much pain and that I was sick all the time. I only was 22 years old back then so there must be something else than stress that caused all those symptoms. That doctor did sent me to a reumatologist. But the reumatologist did not find anything and she diagnosed me with Fibromyalgia...
Then he did send me to a dermatologist for my Psoriasis and to an orthopedic for my knees. I was in a lot of pain back then, and the orthopedic found out that I had a ruptured meniscus. But I couldn't go into surgery, because of my state of health.
But again, that tick-bite that I had in 2005 did not came to my mind. And because I had a lot of different doctors in those 4 years (because I'd move a lot from house to house and from one city to another), the doctor wasn't aware of that tick-bite.
The diagnosis part 1 (not a proper one)
So lets jump to 2012. Since I saw a lot of doctors, specialists and psychiatrists, and they all didn't know what was wrong with me, I didn't want to go to them anymore. So I did not see a doctor from the summer of 2010 till the fall of 2012.
In the beginning of 2012 I did move to the place where I live now, I finally had a house where I could live longer than 6 months or so and I gained some weight, finally, I thought I was getting my health back! But than the fall came, falls and winters are always very hard on me.. In November 2012 I got an infection in my lungs, again. The doctor put me on antibiotics but after a week I only became more and more ill.
So the doctor ran some blood tests. He thought I had a virus or something. So then I found out that I had the Cytomegalovirus (CMV) and I had the Eppstein- barr virus (EBV or also called Pfeiffer). But I didn't get better, I became more ill instead.
So in January 2013 I went to the doctor, again, this time I wrote a list with all my symptoms that I had/have. The list was very long, I wrote the symptoms down and than I realized; 'Wow, that's bad, why didn't I wrote this down earlier..' I guess I did learn to live with all those strange symptoms..I didn't know how it was like to be healthy anymore. So I was at the doctors and I gave him my list. He looked at me and asked if I was bitten by a tick? Yes I said, but that's a long time ago! It was in 2005.. The doctor did sent me to a hospital with a Lyme-poli. At the end of February 2013 they could see me there.
So they ran a lot of tests in Nijmegen. And in March 2013 after my second appointment at the hospital I went home with a prescription for 3 months of antibiotics, Doxycycline. After 3 days of Doxycycline I got allergic to it. So they gave me another antibiotic; Claritromycine and an antimalarial; Plaquenil (Hydroxychloroquine). After a week I also reacted allergic to Plaquenil, so I stopped taking Plaquenil and I took almost 4 months of Claritromycine, from the beginning of March till the end of June 2013. And to support my immune-system I took a lot of supplements and Probiotics.
Than after almost 4 months of antibiotics I still felt sick. But I thought it was from the antibiotics, because the doctor from the hospital said she thought I was better, which I found surprising, because the last time she saw me was in March..so apparently she could see through the phone or something.
The diagnosis part 2 (the proper one..!)
At the end of August 2013 I became more and more ill again. So I called my doctor at the hospital. She said I was fine and that I was experiencing a 'post-lyme syndrome'.......... But I think they didn't know what to do with me anymore. Because I reacted allergic to all sorts of antibiotics.
In December 2013 I got so sick again it was unbearable.. I called the hospital, I asked them for my medical file, they mailed it to me and I called a Homeopathic doctor. I knew I couldn't afford it (to go to a Homeopathic doctor), because my health insurance wasn't gonna pay for it, but I was very scared that I would die from this. I needed help.
So I called the Homeopathic doctor at a Friday and the next Monday, 2 days before Christmas 2013, I could come to her practice, so I did. I was there for 2 hours, I never met a doctor who took the time to listen to me for that long! I was/am so happy I called that doctor! I did go home with a lot of prescriptions for blood tests. After Christmas I went to the hospital for the blood tests and in January the results came back positive.
I did not only have Borreliosis (Lyme disease), I also have: Babesiosis, Bartonellosis and Q-fever. I did not get q-fever from the tick bite I guess. But Babesia and Bartonella are from the tick, for sure.
The doctor did test me for food intolerances too. And bingo, I'm gluten intolerance and have a cow's milk protein intolerance, so now I'm on a gluten-, and cow's milk- free diet.. and I have 17 more food intolerances, like pig meat and banana etc. Also I do have a lot of food allergies (peanuts, soy and some more) and I react allergic to a lot of medicines.
When I was younger I had no allergies! But my immune-system is so overwhelmed with all those infections, viruses and antibiotics that it's reacting to everything..I guess.
So now I finally know why I am so sick for almost 9 years! It was not in my head! I knew it! But what a journey.. and why did they not test for these co-infections at the hospital?!?!
It's known that Babesia makes Lyme disease much worse..and I did not get better from almost 4 months of antibiotics, that's a sign for a co-infection to..! And I have a lot of classic symptoms of Bartonellosis (chills, sore foot soles, shin-pain for example) and Babesiosis (night sweats, chills, neurological problems, low ferritin levels that caused hairloss..etc.) so it's really strange they did not test for these infections.. But on the other hand, Babesiosis is really rare in Europe, so maybe that's the reason they didn't recognize it.
What I'm doing now to get my health back.
Six weeks ago I started a treatment based on herbals, because I am allergic to a lot of antibiotics, so antibiotics are a no go for me. And now I'm really sick from the treatment.. but that's a good sign I guess, the herbals are kicking some bacterial-butts.., the parasites are dying! (it's called a Jarisch Herxheimer reaction, or a bacteria die-off, or a healing crisis..)
I did not expect much from the herbals, but now I feel that these herbals are very powerful. It's like I can feel the parasites and the bugs die. It's war in my body, and it feels horrible because I'm very ill, I have never felt this ill before, but at the same time, it feels very great to kill those invaders!
To support my immune-system I'm using a lot of supplements, like vitamins, probiotics and supplements for detoxing etc. Yes, very expensive.. and no, my health insurance is paying NOTHING, they only want to pay for antibiotics. So it's really hard to pay for my treatment, but it's also really necessary that I am getting this treatment if I want to regain my health!
I know I have a long way to go, I just started my treatment 6 weeks ago, but I'm working very hard to become healthy again :-)
So, this is my story, I'm sorry there's no happy ending yet.
But I'm really proud of you that you made it till the end of this very long story ;-) thank you for that!!
Link to Dutch version