If someone walked up to me three years ago and told me I would be bedridden from a tick bite…I would have laughed. Unfortunately, I am unable to laugh anymore…all because of a little tick bite.
It took three years, six MRI’s, two CT scans, five ultrasounds, two EKG’s, one C-Spine, one L-spine, and one spinal tap to identify the root of the evil disease that destroyed my life.
There is no cure for the condition I am in and it is very difficult for me to cope with living this way.
Over the past three years I have lost a lot of friends because I wasn’t able to go out and party anymore. I lost my job because I was unable to work. I lost my health insurance because I lost my job. Fortunately, I have an amazing family who did not let me give up on myself and I have the love of my life still by my side.
So far I have been diagnosed with Chronic Lyme disease, Fibromyalgia, Pseudotumor Cerebri, Celiac disease, Chronic Fatigue Syndrome, Organic Brain Syndrome, High Blood Pressure, tachycardia and patellar instability. Throughout this ordeal I also managed to develop severe anxiety and depression.
Every couple of months, I visit with a Lyme specialist in Houston, Texas and Skype with another Lyme specialist in Orange County, California.
Before my diagnosis I was actually told by a doctor that I was too young and pretty to be sick. Another doctor looked at me and simply said it was physically impossible for me to have Lyme because it only existed up north.
It is beyond frustrating when people don’t take me seriously or believe me when I describe how sick I am feeling. Just because of the way I look I was told by doctors and some friends that I was fine…that my symptoms were all in my head.
Well I don’t wake up everyday and ask to have recurring headaches and a low grade fever at all times. I don’t wake up everyday and ask for my entire body to ache as if I have the flu. I don't ask to get seizures in my legs or have persistent insomnia. I don’t wake up everyday and ask to have absolutely no energy so that I can barely make it from my bed to the couch. I also don’t suddenly think to myself…today is the day I want to have a rash on my stomach and experience the worst stomach pain ever.
*Attached is a picture of my stomach when I was in the Emergency Room.
My symptoms are physical. Not all in my head.
I was hospitalized three times last year due to the severity of my symptoms. I have tachycardia and my blood pressure remains at a dangerously high level despite being on two different medications for it. No doctor has been able to find out why my heart beats at an average rate of 140 – 205 bpm. I have been told at the age of 28 that I am a walking heart attack. I have to follow a strict gluten-free and organic diet. I take 18 different supplements and medications daily. I am not allowed to exercise and have to keep my stress level at a minimum. Living with this disease is stressful enough in itself.
I nearly died twice after my first hospital visit.
During my first hospital visit, the doctors changed my medications and prescribed me three new ones. At the time I was not aware the dosages were too strong for my body and I took each pill as directed.
It took only two weeks for the medicine to build up in my system and cause black outs with suicidal tendencies and actions.
The first episode occurred when I was in the car with my mother and brother. I asked my mom to pull over on the side of the highway. I suddenly jumped out of the car and walked across the first two lanes of traffic. I then stood in the middle of the second lane. A pickup truck barely swerved in time to spare my life. I then continued to cross two more lanes of traffic traveling the opposite direction. My mom followed me the entire way trying to get my attention. She finally caught up with me and when she turned to face me she realized I was not mentally there. I had completely blacked out. She started shaking me and I woke up. I instantly started crying and I had no clue where I was. She walked me back to the car and immediately called the doctor to inform her of what happened.
During my second hospital visit, I was waiting in the ER for a doctor. I was talking to my family and I suddenly grabbed the first bottle of pills I found in my purse. I put all the pills into the palm of my hand. I began to bring them to my mouth and my mom jumped on top of me and started screaming for help. I woke up in a hospital bed with members of the hospital staff surrounding me. I had no recollection of the second incident. Luckily, I happened to already be in the hospital and they were able to find the cause of why I kept blacking out.
The side effect for each medicine I was on at that time included “suicidal thoughts or actions”. In my case it was proven to be true on all three.
Lyme continues to migrate throughout parts of my body. I go to bed with at least ten symptoms and awake in the morning with ten different symptoms. When Lyme settled in my knees, my kneecaps turned inwards and I became bedridden. I currently wear braces on both knees.
My most recent blood work and tests show I have blood clots on my brain and a co-infection in my lungs. I physically cannot have a PICC line put in because my veins are too small and it would be too dangerous considering I already have blood clots.
I miss little things that I used to take for granted. I miss going outside. I miss seeing friends. I miss driving my car. I miss sleep. I miss being able to eat food that isn't gluten, wheat, soy, dairy and sugar free. Most of all, I miss the days when I didn't have to miss these little things.
I know I have a long road ahead of me and I continue to move forward with the support of my family, friends and my one true love.
Since my diagnosis in 2011, I have tried all antibiotics (including IV therapy) to help reduce the severity of the disease. However, all medication has failed to put me into remission and I continue to live with severe symptoms.
As of August 16, 2013 I have made the decision to no longer continue my Skype appointments with the specialist in California. It took me six months of treatments and $7,000 on my Visa card to realize no progression with my health has been made. Even though I feel defeated, I refuse to give up on myself. I look at this as a new step toward the beginning of the end. Now I will begin my search for a holistic doctor located in Texas and pray for my happy ending.
© 2013 Valerie Lynn. All rights reserved.
***UPDATE AS OF OCTOBER 2014***
It has been over a year since I posted this story. So far no progress has been made. I had a major full blown seizure in July 2014 and I was rushed to the hospital in an ambulance. Thanks to my love who was there at the time and called 911 right away I am still alive. As of two months ago I am seeing a new holistic doctor two hours away from where I live. I hope she can help me for now. I found a doctor in a different state who has a treatment that will help with my symptoms but of course there is no cure. Moving to a different state is my ONLY hope to have a somewhat normal life again. My fiancé is currently working to save up so we can move for my treatment. We hope we will only have to wait another year until we are able to accomplish our goal. Until then I try to keep my hopes up high and remain positive even though some days that seems impossible.