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What I Wish I Knew During the Struggle to Get My Lyme Disease Diagnosis

In July 2011, I was 16 years old. I noticed a streaky, oval-shaped rash in the center of my back. I didn’t feel like myself. I had a bad cough, flu-like symptoms, and I had fainted on my first day of work. I didn’t think much of it, though. About two weeks later I was feeling back to normal and continued enjoying the remainder of summer.

In October 2011, my previous symptoms came back with vengeance. It started out with intense migraines. Along with the migraines came nausea, fatigue and insomnia. I told my parents about my symptoms and we went to my primary care doctor. She ran blood tests and called back with the results stating that everything was normal, but something showed up on the Western blot test, used to detect Lyme disease. Lyme disease is an infectious disease that is typically transmitted by a tick bite.

She recommended that I see an infectious disease doctor to have the test done again by a specialist. This specialist told me the test was positive for Lyme disease, but he wanted to run the blood test once again just to be sure. If it came back the same, he told me I would be started on an antibiotic. When I came back a few weeks later, I was told it was a “false positive.” In some cases, you may just get bit and be treated with a round of antibiotics right away. I was so confused and wasn’t given any answers. I went home and researched Lyme disease for myself. I learned about what a controversial disease this is, along with the faulty testing and disbelief.

I felt myself worsening. I continued going to follow-up appointments with the infectious disease doctor and saw a neurologist. The neurologist ran brain scans and told me everything looked normal, though she refused to give me medication for migraines until I saw a psychologist. She said to me, “Well, be thankful you don’t have a brain tumor, sweetie.” While a second opinion neurologist told me that I was just going through a “phase.” I was appalled by the way I was being treated.

In the duration of this time, I was constantly missing school. I would wake up in the morning nauseous and unable to get out of bed. No one really believed that I was in pain and sick. I could tell my infectious disease doctor was getting annoyed with me. For a while, all he did was draw blood, run tests and repeat. He recommended I see an adolescent medicine doctor that specializes in chronic fatigue syndrome, a cardiologist, and a psychologist. Since nothing showed up in my blood work, he assumed it was an emotional problem. Anyone who saw me on a daily basis could tell something was wrong and it wasn’t in my head.

The cardiologist diagnosed me with postural orthostatic tachycardia syndrome (POTS), which can occur alongside Lyme. Unwillingly, I went to the chronic fatigue specialist also and he recommended that I get a second opinion from another infectious disease doctor. Evidently, the second opinion doctor said the exact same thing as the first one. It’s like they were robots all programmed to say the same thing.

In June of 2012, I was finally diagnosed with late-stage Lyme disease by a Lyme-literate medical doctor (LLMD).

During those two years I was on home instruction for school and managed to attain my high school diploma despite everything. It wasn’t until August 2013 that I started seeing a different LLMD who devised a treatment plan that allowed me to regain a sense of normalcy back into my life. By October 2013, I was about 90 percent better. I felt on top of the world.

Sometime around April 2014, I relapsed. My health plummeted due to not having the financial means to continue treatment. My ability to read and focus vanished, my memory began slipping, and the energy I once had was again depleted. I found myself homeless and deeply relying on the ones who loved and cared about me. I became depressed and felt there was no way my life would ever be “normal.”

Fast-forward to December of 2014. I was finally able to afford treatment again. I put my pride aside and set up two different fundraisers, in one of which I sold T-shirts that spread awareness for this disease. I was also awarded a medical grant from the LymeLight Foundation. The generous people who had donated to me, and especially the LymeLight Foundation, undoubtedly saved my life. I underwent three rounds of intravenous antibiotics. I administered them myself under the care of my doctor. I had a Hickman catheter in my chest that allowed me to infuse at home.

This took me up to August 2015. Funds were running low and I had to make the decision to continue IV antibiotics, which are extremely expensive, or take my health in a different direction. I do believe IV antibiotics were able to get me about 60 percent well again. Through reflecting on the past years, I came to the conclusion that I wanted to try something different. In October 2015, I began seeing an alternative medicine doctor with experience in treating Lyme. This takes me to the present, March 2016. I am on a protocol that is based around intravenous colloidal silver treatment.

woman with IV in doctors office
Danielle at a doctor’s appointment.

Before I was diagnosed, I struggled a lot with having an “invisible illness.” Everyone would always tell me I didn’t look sick. In return, I would come up with different reasons for my pain, and downplay how sick I felt every day. I would lie and say I was fine, even when I wasn’t. I felt like I created a trap for myself because I never wanted people to know the truth in fear of them not believing me. But I actually was only hurting myself.

If I knew then what I know now, I would say to not be embarrassed of your struggle. Do not live your life according to the opinions of other people. Not everyone will understand what you’re going through, therefore you cannot always expect an understanding reply. Live authentically and be aware that everyone is going through something. Sharing your story in a positive way is what will separate you from the rest, and can bring you peace.

In my heart I’d like to say that I’m nearing the final chapter in this story. Lyme disease seems to always have its skeptics, but I hope the next time you see this disease “trending” on social media you think of this story. I hope you remember that no one is immune from this happening to them, either.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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