How has Lyme Disease affected your life?
My name is Jordan and I’m 21 years old. I was catapulted into the gruesome world of chronic Lyme disease in March of 2013. At the time I was training for a marathon to raise money for cancer research and doing well at Cal Poly San Luis Obispo studying to be an entomologist/taxonomist. I was salsa, swing, and blues dancing every week. I was surrounded by new fun-loving friends, a great boyfriend. I was in peak health and exuding youth and happiness. It was a great time to be me. Then the horror began as my body slowly began to fall apart.
One week in March/April, I noticed I was feeling funky. I was a little dizzy, tired, and not very hungry. I paid no attention. It was probably a cold. The days, weeks, months ticked by and my body was failing more and more every day. My appetite was gone. I was so dizzy that I became accustomed to always feeling like I was going to fall over. I was haunted by a persistent feeling of someone strangling me, and my throat was always spasming. I rarely vomited but would spend literally hours a day with my face in the toilet right at the verge of vomiting, hoping, BEGGING for my body to please just let me throw up so the crippling nausea could stop for a few minutes. I wasn’t sleeping well, or at all.
Despite all this I ran a half-marathon, pushed through my classes, (even was on the Dean’s list) and stayed in San Luis Obispo over summer to work two jobs. I spent countless hours at the Health Center on campus. I practically lived there when I wasn’t in class or working. They made me take probably about 15 pregnancy tests. Blood tests kept coming back abnormal but no doctor could tell me why. They tentatively diagnosed me with various diseases for short periods of time before moving to another.
I was anorexic one day, I had GERD the next, then mono, then depression. I knew they had stopped taking me seriously when a physician’s assistant told me, “Sweetie, I’m going to take you to see the women’s mental health counselor and she’ll help you work through your problems.” Eventually I was referred to a gastro-intestinal specialist. I had an endoscopy done which showed that my stomach was inflamed. I was diagnosed with gastroparesis. My upped digestive tract was partially paralyzed, my vagus nerve was damaged.
When I asked why the doctors never had an answer. They called it “idiopathic,” which was medical speak for “we don’t know why you have this.” Meanwhile, I was dropping pounds and losing the ability to go to class. I was prescribed a myriad of medications that were supposed to increase motility. Looking back, many of them were very dangerous. I took everything from hardcore antidepressants intended only as a last resort medication for suicidal patients, to a drug that had a not-as-rare-as-you’d-hope side effect of incurable tardive dyskinesia, to an FDA black-listed drug that I had to get shipped from outside the country that had caused people in the past to drop dead from cardiac arrest. None worked except the FDA-blacklisted drug which made life somewhat bearable. So here I stayed in this somewhat bearable zone of borderline misery for a long time dragging myself to class, thinking that I was crazy, and wondering why my life and my body were falling apart.
Then the infection entered full-blown stage 3- total systemic infection. I could go to class no longer. I sat in my dorm room desperately trying to study for missed midterms while suffering seizures. My legs hurt too much to walk very far. I kept 911 dialed on my phone ready to call because it would get so hard to breathe that I was often sure I was going to die. I dropped most of my classes that quarter. My heartbeat was erratic and skipping constantly. My ears were ringing so loud it was hard to hear. The saddest part was rushing to the hospital only to have the ER staff give me odd looks, hand me an informational flyer with “How to calm yourself during a panic attack” written on the top, and send me home.
I left school, I just couldn’t do it any more. I continued to decline at home. My parents desperately tried to get me to eat. I could no longer go outside because the sunlight burned my eyes like a vampire. I wouldn’t sleep for 2-3 days at a time. I’d stand in the shower for 10 minutes trying to remember how to wash my hair. My gums bled, my nails cracked, I heard voices that weren’t there. My skin erupted with open sores and scars. We were in the middle of scheduling a procedure where I would get a Botox injection in my stomach to try to force my pyloric sphincter open so food could get through. We were considering getting a pacemaker placed on my stomach to shock it into working. I google searched the phrase “total gastrectomy” quite a few times and I was actually considering it. At this point I had secretly accepted the fact that my life was over and that I was going to die.
My memory is a little fuzzy, but I remember one day talking to my uncle over the phone and him telling me about his symptoms. He has Lyme disease that he contracted years ago and still suffers from chronic Lyme and persistent co-infections. I vaguely remember saying to him “Yeah me too… yeah, I get that too, yeah me too. Yup, yup, yes, YUP, YES ME TOO!!!” Symptom after symptom after symptom we shared. I googled Lyme disease and found stories from other people with the exact same symptoms as me. My uncle told my family and I to go to our primary care doctor and get a quick prescription for oral doxycycline, take it for a few days to piss off the bacteria so they are out and about in my blood then get a Western Blot. The ELISA, he explained, was completely unreliable.
Fast forward to my father and I sitting in a room with the Dr, his two young female interns in the back with a computer actually pointing at me, whispering and giggling while ignoring my father’s story about my symptoms and why we need these antibiotics. The Dr proceeds to take my stack of medical files showing that I have real serious health issues and places it on his desk without a single glance, leans over in his chair, and says, “Now, what I’m about to say may anger you, but I’m just going to throw it out there…”Anorexia.” My father and I were stunned. Soooo…. that’s a no to the antibiotics then huh? “We can get you a team of anorexia mental health professionals who will help work with you through your illness. If you just gain 20 pounds I suspect that all of your problems will go away.”
What. an. incompetent. doctor.
I had to get this test to prove to all the Dr’s out there that I wasn’t an anorexic attention-seeking loon. And lo and behold here I am today in the middle of my long-term treatment for late-stage Lyme disease, Babesiosis, Mycoplasma pneumonia, and Bartonellosis. I’ve clinically tested positive for all except Babesia, but unfortunately the tests for Babesia especially are very unreliable and I have all the classic Babesia symptoms.
Treatment has been absolutely the most difficult thing I have ever had to go through in my entire life. With these diseases you get much-much worse before you get better. I have spent countless nights curled in a ball on the floor screaming and BEGGING for the pain to stop. The brain swelling from the Bartonella die-off makes me see things, hear things, convulse with seizures. There have been days where both legs have been completely paralyzed for hours and I get around by dragging myself on the floor. Sometimes I will lose hearing for 5 minutes, lose vision for 15 minutes, or lose the ability to talk properly for a half-hour.
In my deluded states I have contemplated suicide and thought about bashing my head into a wall to stop the unbearable pain. Many a night I have fully accepted death as I was absolutely 100% no doubt in my mind certain that I was about to die. But I’m not going to die. In fact, I’m improving. Only 5 months of hardcore oral and IV antibiotic and anti-malarial treatment has brought this girl to her knees, but I’m seeing the faint light at the end of the tunnel. I’m seeing improvements. Less trouble breathing, less fatigue, less dizziness, better memory, fewer heart palpitations. Slowly but surely I am gaining a hold of my health again. When not on IV antibiotics (and actively herxing) I am about 50-75% better than I was before treatment started. I am a living-breathing best case scenario.
I will never forget this suffering and it is far from over but by golly is it worth it. Because just knowing that in another year, maybe two, I can go back to school, run another marathon, spin around on the dance floor again, and live my life again. That alone is worth any amount of pain. I will be left with a lot of permanent damage from these infections. I will never be cured. It is called chronic Lyme for a reason. But someday I’ll be healthy again. And I will be a different person. I will be a better person. Life and health are precious things I know that now. I know who my true allies are. And I know that no one is invincible.
I am not going to be a silent statistic. I am going to fight during and after my treatment for Lyme patient rights and chronic Lyme disease awareness. 25% of the ticks on my college campus carry the Lyme spirochete and there are students getting infected at my school right now. But I’m going to do whatever I can to help them. I am so lucky. The pain and suffering I’ve experienced is nothing compared to other Lyme warriors out there. I can still walk, talk, remember a lot of things, and function. Many with Lyme cannot or are bedridden. I owe it to those who cannot fight to fight for them.
Look out Lyme, you just infected the wrong gal!
What inspires you?
Science, salsa music, insects, fuzzy socks, and Neil deGrasse Tyson. 🙂
“In the depth of winter, I finally learned that within me there lay an invincible summer.” – Albert Camus