Guest Author: Jacob Stehlar (pictured in the middle with his brothers)
My name is Jacob. I’m 24 and have had the clinical diagnosis of Chronic Lyme Disease.
Here briefly is my story of diagnosis.
Overview of Diagnosis
The past year has been hell for me. I’ve had to quit school, I can’t work and everyday I deal with sickness. I was on the drug Cymbalta up until summer 2015. I was having urinary problems, heart palpitations, forgetfulness, and slight dyslexia on the drug and it was getting worse. I had been tossed around anti-depressants since I was 11, with none of them helping much until I tried Cymbalta. It helped for a few years. Then I started to have less and less energy to do things that I enjoyed, such as wrestling, football, and weight lifting. But I just stuck with it even though I didn’t feel good. This past summer I weaned off my medicine under my doctor. It was hell, I felt very angry, sad, racing thoughts, and so many other things. But then I started to feel more human, and I started to laugh and enjoy things more even though I had low energy. I started feeling more human and intune with myself, because for so long the anti-depressant drug was making me become apathetic and numb. I still was getting ill though. I had terrible brain fog. And my dyslexia symptoms were getting worse, where I couldn’t even read which used to be my past time. I gave up and tried starting Cymbalta again in January so I could start college again. I had been working on my bachelor’s degree in environmental science. It made me so nauseous I was vomiting for 2 days. So I stopped. This whole time I had been researching natural depression cures, and was trying lots of different things with not much success. I finally saw a naturopathic doctor in Late February. I told her all my symptoms, and I was surprised she wanted to test me for Lyme disease. I always thought with Lyme you get a rash, go to the doctor and get antibiotics for 2-4 weeks. That is not the case, only 40-50% actually show signs of the rash. And most tests done for Lyme are not very accurate. I started her protocol and did feel weaker during the detox time, and detoxing made my depression worse. I haven’t stuck to the protocol she gave me to a T. Especially with diet which is the most important thing. Because partly, I didn’t fully believe her, with depression in my family I thought it was just that. Which is what I’ve been told all my life.
But really depression is a symptom of something else going wrong in the body, not a genetic disease. My tests came back after over month or so of waiting. And I showed positive for Lyme disease. So I was infected with the disease at some point in my life most likely when I was 8-10 years old. I remember getting terrible flu for a whole week, throwing up over 10 times with fever and chills. This happened again when I was 17 and I didn’t know the cause of it. Lyme is really a broad term for multiple infections that can happen from a tick bite. I have been chronically sick since I was a child being on multiple antibiotics off and on for various infections. A lot of antibiotics wipe out good gut flora, and with poor diet that I had as a kid is a recipe for depression and bad health alone. Back in May I went to my regular Dr for something to help with brain fog. I was given the drug Strattera to help with brain fog, dyslexia, focus problems, and depression. I felt trapped because financially I’m struggling. I’m unable to work, and my parents are going through a divorce. I live with my mom and we live paycheck to paycheck now. Ever since I was little my dad was an alcoholic, which led to a lot of stress and turmoil. He hasn’t been as supportive during my diagnosis until more recently. So I was forced into trying this drug which was labeled a non-stimulant. But it wasn’t the case for me. I had adverse reactions right away from aggression, to urinary problems and swelling. I stopped the medicine on May 13th, after 9 days of being on it. That weekend I felt like I was going crazy, I had to go to the emergency room to get me something to calm down. It helped for a bit, then I went 5 days without sleeping, felt like I was going nuts. Went to the emergency room 3 more times and had to stay the night and was given Ativan to help sleep. Didn’t help much, and caused me to have difficulty breathing. All the symptoms I was having before became even worse after that drug, along with derealization/depersonalization, something I’ve never experienced in my life. I was in a constant panic/worried state for over two months now, while feeling like a ghost, as if I’m already dead. I had to stay a week at the hospital to monitor me because I was going to kill myself. My memory is so bad, I’m forgetting basic things, I walk into rooms and don’t remember why I came in here, I confuse words, and miss hear what people say, I get really dizzy, vomiting, confusing words, weakness, weight loss, blurry vision, racing thoughts, trouble walking, confusion, anxiety, neck pain and stiffness, heart palpitations, head pain and burning, fevers, chills, head pressure, food allergies, and now panic attacks after Strattera. These things were going on before the Strattera, they just have become even worse after the Strattera experience. And with my dad, my parents divorce, and other family financial problems, it’s just been too much at once for me to take. I have been in a bad mood for years, alienating myself from friends and family. And it all boils down to being sick and not fully knowing it at the time. I’ve tried to do everything on my own putting on a mask pretending things are okay, but they are really not, and now everything is much worse. Chronic Lyme is a disease that has a lot of debate around it. New York is pushing a bill to make long term antibiotics legal for Lyme, but that could take a few years which I may not have, they are also trying to work on a better test to show exposure. My test was done through Igenix which is one of the top labs, but I had to pay out of pocket for it. There is a lot of debate about the disease, but I know that I feel like crap, I have felt this way for a while and it’s only getting worse, and I’ve tested positive. I want to live again, I want to go back to college, I want to be able to work, I want to be able to do the things I used to love doing again, like football, wrestling, and being involved with my religion. I hope I can get better, but I won’t be able to do it alone.
Growing up with Lyme and Abuse
Growing up I was a pretty active kid, I had friends in school and was a part of after school activities. I would be outside all the time exploring all the country and state land near my house, sometimes walking out in the woods barefoot which wasn’t too smart. Until around 11 I started feeling more sensitive to things. (This was shortly after the week of flu) I became very unbalanced – I would trip and twist my ankle a lot. I end up fracturing my ankle. I also started having more difficulty in school, trouble with focus and memory. I started having more anxiety and headaches. Around this time too my father’s alcoholism was at its worst. He didn’t work for a whole year and just got drunk every single day and became verbally abusive, threatening to smash my toys and other mean things. I was ambitious though, wanting to get out and work. I had my first job delivering penny savers with my mom at that age. I was 11 years old and I was working more than my dad. He would constantly pressure me to play little league baseball. When I did, he only ever showed up to one of my practices and he was drunk and belligerent. This was very embarrassing for me because I was already having trouble in school now. Then there was an incident where I became very angry and talked about hurting myself. My dad slammed me against the wall and hit me. After that my life changed forever. I was taken to a psych ward for children for the night, and was prescribed Zoloft. Looking back at it now, I was a kid who was in a very bad situation just crying out for help. My mother chose to ignore the warning signs I was showing for a while. At one point my mom took me and my two younger brothers to a safe house for a few days. We were on food stamps and other assistance during this time. The low dose Zoloft helped for a awhile but it didn’t change the situation. What was worse was my mom decided she wanted to homeschool my brothers and me! So in 6th grade I was taken out of school, and began my homeschool journey. Which was okay at first, but later on it just fizzled out. I really hate my parents for doing that. My mom for doing it, and my dad for doing nothing about it. I believe this fed into my anxiety and I didn’t have many friends growing up.
Through my teen years I was put on different anti-depressants from Paxil, Celexia, Prozac, Effexor, and Wellbutrin. My symptoms never really improved, but only continued to get worse. Along with the stress of my father’s alcoholism. We would get into constant fights. When he would drink he just wouldn’t leave you alone. It would take me writing a whole book to explain all of these events. One time he tried smashing my xbox because I wanted to hang out with my friends who were good kids. The police had been called multiple times, at least 10-15 times growing up. What was even worse was my mom decided to homeschool me and my brothers when I went into sixth grade. This left me even more confined to the house and trapped in a negative environment. I fell into isolation and didn’t have many friends and this has continued since then. I had some jobs in my teen years while homeschooling but I had so much anxiety, I would tremble and shake at work. I’m not sure if it was the meds or the Lyme getting worse. It wasn’t always bad, there were good times and I hold on to those memories as tight as I can because I know it can be that good again. My mom could be very controlling, too. If I ever wanted to do certain things she would act like a maniac and threaten to smash my stuff. There are a lot of other examples like this, but again I don’t want this to turn into a book. Still being tossed around on medicines, I was put on Cymbalta. It did seem to help for a while. I was finally able to start college at age 20 and get my two year degree and continue on towards my bachelors. The medicine really did help for a while and I thought I had found my answer (even though I was still in a bad situation around my father’s alcoholism). Then more and more side effects began to emerge on the medicine a couple years into it. I just became so fed up with the meds. The last spring semester in college I did football training camp. I could keep up with weights and I would go to every practice. But every time I would end up coming down with a cold, flu, or sinus infection within a few days of consistent practice. I knew this wasn’t normal, why was I chronically getting sick? Even my brother who was exposed to as much as I was wasn’t getting sick and he was on the team too. It just didn’t make sense. And I knew with chronic illness there was no way I could keep up. There was more going on with my body, and I was determined to find out. My parents finally split up and we went our separate ways. I went with my mom because I was going to transfer to a different college. The verbal abuse continued from my dad, he hated that I went with my mom.
It’s been difficult for me to distinguish what are the Lyme symptoms, and what are my genetic and environmental symptoms. I was exposed to mold for a few years which I know has affected my health. I really think all the stress of this past year and the mold exposure really brought out the Lyme that has been in me.
I plan to get through this illness, I’m not going to give up. There is still a chance for me to be happy.
*To donate or share Jacob’s fundraiser visit https://www.gofundme.com/2jtuqs5s