I never saw the tick that bit me. I’ll never know how many of my health issues, mental and physical, were caused by Lyme and how many would have been around anyway.
I had always had slightly anxiety and sensory issues. But aside from that, no one is quite sure.
The worst started around the time I was eight years old. We think I had a semi dormant strain of Lyme before then, because I would have random medical issues that could not be explained. If you are familiar with the world of Lyme Disease, and its co-infections, you might know that injury can bring out a dormant infection. When I broke my right arm on my eighth birthday at my uncle’s graduation from college, by falling down a hill in chase after a stuffed bison, (I should mention I am immensely clumsy and not that bright.) the break caused a previously dormant infection to rise to the surface. My arm healed, but unexplained pain continued. I had to sit on the sidelines of my karate class because I would have pain so bad in my right wrist that it was suspected I had sprained it. And then, the pain began in my left wrist. Then my knees. Then headaches that made it hard to think. More and more symptoms piled on top of each other and I became sicker and sicker.
We saw dozens of doctors in dozens of different specialties. I can only thank God that I had a primary care doctor who wouldn’t give up on me. We had tested for Lyme several times, but due to the CDC’s outdated standards and their purposeful ignorance toward correct testing, I was told I was negative. You do not need all of the bands to be positive for Lyme disease. Please educate yourself on Lyme Disease and the many horrors it can cause. It has hundreds of symptoms and can disguise itself as other diseases. If you are interested I will provide links to websites that can give more information.
By the time I was finally diagnosed, I was barely able to think. I felt moronic all the time. I would sit there in front of my text book, reading the same passage over and over and over again desperately trying to absorb the information. But it would never stick . My brain felt actually fuzzy. Like it was full of a thick gross fog that refused to let information through.
I was on a lot of oral antibiotics for a long while. They didn’t help. I got worse. So much worse that at 15, my ability to do school at all fell down the drain. By the time I was 16, I had almost 60 different symptoms every single day. It was complete misery. And yet I felt useless. So I got a job. Thankfully it was only a job that lasted three seasons, but by the time it ended I was barely managing to make it. My legs weren’t wanting to hold me up and my vision would black out quite often. I spent most days smiling in spite of literally blinding headaches.
Then came the wheelchair. My own body was betraying me.
The panic attacks. The anxiety. The sound sensitivity so bad that I had to spend entire weeks locked in my room wearing earplugs because the slightest sound of an animal licking or someone whistling would cause me immense pain and send me into a panic attack. The heightened sense of smell where coffee brewing in the morning would make me sick to my stomach.
A little before I turned 18, we managed to find a doctor in New York who has quite literally saved my life. He validated all that was wrong with me, and promised that he would get me better. I cried. Better had never seemed like a possibility before. He gave me hope for the first time.
On my eighteenth birthday, I had the surgery to get my hickman catheter put in. This would allow access for IV meds. The first thing that ever helped me. Of course, it got much much worse before it got better. I was allergic to the surgical tape and the cloroprep, and have scars from my awful reactions to both. A lot of bad things happened. Some things got dangerously worse. But eventually, my list of 60 symptoms a day was lessening. But I developed seizures. I remain conscious during them, but shake violently, slamming my head into things and wrenching my neck. They are rather exhausting.
I don’t know if I will ever reach full remission. At the moment, I am still on IV meds. I am still experiencing seizures. I will always permanently have anxiety, ADD, depression, and residual pain. My whole life I will have to be on maintenance medicine. But my list of 60 symptoms per day is down to less then 10 per day. Sometimes less then 5. Some days, its just headache and seizures. Other days I lay in bed, unable to walk or really think. But it’s better then it was. And that is amazing. My doctor says my port might be able to come out in February. Yes, this February. I hope and pray that this is the case. Starting out my twenties in relative health is something I had never imagined. If you are the praying type, I would appreciate the prayer. My health seems to be getting worse at the moment, and the possibility of getting it out in February seems to be getting smaller.
But it is still much better then it has been in the past. If I had gone untreated much longer, I would likely be dead by now. So, I’d say that’s an improvement, wouldn’t you?
Here I am, placing an update I never thought would occur. It’s November of 2017, and I’m living a semi healthy life. Anxiety is most of the time, managable. (Or, least ways, hideable.) My narcolepsy and various allergies are the only things keeping me from living fully, now. And that seems like nothing, compared.