One of my goals in starting this collection of Lyme stories was to help bring knowledge that Lyme Disease is not limited to the east coast of the United States, but rather, is a worldwide epidemic. Joanne’s story comes from the Netherlands, where treatment for Lyme Disease is subject to CDC guidelines, limiting antibiotic therapy to 28 days at most which is hardly long enough to eliminate a persistent, chronic Lyme infection. If you think that treatment is difficult to find in the US, then it may seem all but impossible to find in Canada, the UK, and most parts of Europe.
Joanne and I have been emailing back and forth for days now, sharing little bits of our all-too-similar stories, and it has been a pleasure getting to know her and her struggle. Thank you, Joanne for being brave enough to put your life into words.
If you would like to share your story, I would love to hear from you. Please contact me via email at email@example.com.
First Name: Joanne
Where do you live? Utrecht, Netherlands
When/Where do you suspect you contracted Lyme?
I wish I had a clue, but I really don’t know. I’ve never seen a tick or a rash. But I must admit that I never checked for ticks when I should have, and even if I had done so I’m not sure I would have recognized the tick or the rash. My brother recently found a tick on our cat. I had actually seen it a few days before, but I thought it was just a scab. I’m terribly inexperienced with ticks for a Lyme patient. My most educated guess would be that when I was in high school I used to hang out with friends in a field of high grass that was reportedly a tick infested area, but unfortunately I’ll never know for sure where and when I contracted it.
When did you first begin to feel ill or start to notice strange symptoms?
It first started at the age of 16 when I suddenly got a lot of infections in a row. Bladder infections, sinus infections, angina, pneumonia, etc. I needed a round of antibiotics nearly every month for about a year. The antibiotics kept clearing the infections so I didn’t think much of it. Then at the age of 17, I got mono and I fell so ill that I just couldn’t keep up with life anymore. I never recovered. I see 17 as the year that it started because that’s when it really interfered with my life, but my doctor thinks I’ve had it since at least 16 and that the mono sort of opened the gates to the Lyme.
What were they?
At first my main symptom was abnormal exhaustion. I slept a lot but at odd times and when I was awake I was still tired and I couldn’t focus on anything due to severe brain fog. I also had swollen and painful lymph glands, throat ache, headache, and nausea. In the beginning I had an episode of extreme pain in my hips, knees, and ankles (so bad that I couldn’t walk anymore) but that subsided after about a week and only came back sporadically the first couple of years.
How many doctors did you see before reaching an accurate diagnosis?
I saw around 8 doctors before I was correctly diagnosed. Two of them did consider Lyme Disease and ordered a blood test (ELISA), but it came back negative both times so they ruled it out. And so did I, as I trusted their judgment. I finally had to go abroad, to Brussels, to get my diagnosis. My current doctor suspected a zoonosis right away but I was skeptical until the test results came back. Borrelia showed up in a PCR and for bartonella I do have antibodies, but no other doctor had ever tested for that. Later I also tested positive for c.pneumoniae.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
Yes, I was misdiagnosed with Chronic Fatigue Syndrome for nine years.
What are the main symptoms that you experience currently?
My symptoms gradually got worse over the years, especially the pain, which is now permanent. The past ten months I have been pretty much housebound. I currently suffer from extreme exhaustion, migrating joint and muscle pains, stabbing pains, muscle twitches, memory loss, brainfog, swollen and painful lymph glands, stomach ache, throat ache, headache, jaw stiffness, light and sound sensitivity, irritated sinuses, dizziness, chest pains, shortness of breath, tinnitus, skin rashes, insomnia, (so unfair!) and ice cold hands and feet. This can all sound rather abstract, so to healthy people I like to explain it as having a permanent severe hangover, a bad flu, and a large rock placed on top of my chest. Cognitively I feel like I have Alzheimer’s and brain damage. The pain, which mostly (but not only) resides in my legs, feels as if someone lit my legs on fire, is stabbing them with a knife and/or trying to rip them off my body. Sometimes I wonder if I was run over by a train while I was sleeping. That must be it.
What does your treatment regimen look like?
I’m currently on a mixture of pharmaceuticals and a lot of supplements. Most importantly I’m on oral antibiotics, so far 9 months and counting. I’m also on LDN for the pain, omeprazol for my stomach, and I get b12 shots twice a week. The rest changes. In total I take around 30 things (pills/tinctures/powders/injections) a day. Other than that I take Epsom salt baths and I use my infrared sauna twice a week. I’m also on a grain/dairy-free and sugar-restricted diet, but I’ve been eating that way for the past 5 years, since before I knew I have Lyme Disease.
How much do your symptoms prevent you from living a normal life?
In every single way. I sit at home just watching my life passing me by. I can’t work and I had to temporarily un-enroll from my university. I’ve had to defer my offer to study a semester abroad at my dream university, which I’d been planning for a year. I see my friends maybe once a month, always at my place. I live on my own with my boyfriend but my mom often comes over to clean and help around the house. I’m also afraid of navigating traffic, as one of my brain freezes once caused me to fall off a bridge while cycling, which resulted in a broken neck and skull. As long as these monsters are inside my head I’m not driving anything. In a more long term sense, Lyme Disease has caused five years (and counting) delay in my education, and I hardly have any working experience. I’m dependant on the state for my income and my wish to have children will have to wait a whole lot longer than I would have preferred.
What do you like to do in your free time and how is this different than before you were sick?
Before I got sick I was a very busy girl. I went to school fulltime and I had a job, played guitar, and took horse riding lessons. I worked out and was involved in a lot of social activities.
Now I like to sleep a lot (thanks to sleep medication), and I watch a lot of TV. Netflix is basically my best friend. I also like to read beauty blogs and watch make-up tutorials on YouTube. I try to play a brain training game daily in an attempt to improve my cognitive functions, but I don’t always make it. If I’m lucky I can go to the grocery store across the street, but most days I spend in my bed or on the couch. So it’s a difference of night and day.
What do you want people to know about Lyme?
I want people to know that even if your regular test comes back negative you might still have Lyme Disease. I want people and especially doctors to know that chronic Lyme exists, that it’s very hard to treat, and that one month of antibiotics is not going to cure it. I want people to know Lyme is very debilitating and the quality of life of a Lyme patient is one of the poorest among chronic illnesses. I also want more awareness for co-infections. Where I live 56% of cats are infected with bartonella yet no one I tell about it has ever heard of it. Lastly, I want people to be aware that Lyme might be sexually transmittable. So if you have it and your partner develops symptoms, have him or her tested. My boyfriend developed symptoms and tested positive.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
Having this disease has taught me who my real friends are and the outcome was different from what I would have expected otherwise. When you’re sick for so long it really is a test for your relationship with someone. Some friendships didn’t survive it, but the ones that do, become stronger because of it. One of my friends is currently so ill from Lyme Disease that her life is on the line, so I currently can’t muster any more positive things to say about this disease.