|This is me, 18 years old, just before my symptoms snowballed|
My Lyme story is not unique. It is actually very similar to other people diagnosed with Lyme. In the documentary Under Our Skin it is mentioned that a majority of people with Parkinson’s, Alzheimer’s, MS, Fibromyalgia, Lou Gerugs disease actually came up positive when tested for Lyme disease. The more I meet people who have been misdiagnosed and undiagnosed for many years it makes me think that the same bacteria that causes Lyme could be the culprit for many other diseases too. It has made me strongly wonder if the medical community has grouped similarities and called them all various diseases. All of these things have one thing in common: they stem from the nervous system. It’s not to say that these diseases do not exist but I do think it is very interesting and something to consider. Here is a list of all the symptoms Lyme can cause. I think you will see why it is often diagnosed as other diseases because the Lyme bacteria can cause so many symptoms. It is important to note that no two Lymies are the same and even people with similar symptoms are never identical….the common thread is where the symptoms come from. If your brain controls it, it can be altered by Lyme. Symptoms caused by Lyme: Brain fog, Insomnia or excessive sleep, Memory loss (short and long term), Joint pain/swelling/stiffness, Poor coordination/ataxia, Difficulty reading, Slow or slurred speech, Unexplained chills and fevers, Rash, Sudden abrupt mood swings, Continual infections, Poor concentration, Decreased ability to spell correctly, Tremors, Disorientation, Burning/stabbing pain (I find this symptom especially in my clients feet), Facial paralysis(Bell’s Palsy), GI distress/abdominal pain, Poor word retrieval/Aphasia, Shortness of breath, Anxiety, Heart palpitations/chest pain, Difficulty swallowing, Sore throat, Swollen glands, Nausea/vomiting, Anorexia, Cough, Vasculitis, Muscle pain or cramps, Loss of muscle tone, Changes in taste or smell, Twitching of muscles (face or other), Obsessive-compulsive symptoms, Panic attacks, Changes in cerebral blood flow/brain waves, Peripheral neuropathy/tingling/numbness, Number reversal, lightheadedness, Headaches/migraines, Light sensitivity, Menstrual irregularities, Change in hearing/buzzing/tinnitus, Trigeminal neuralgia(TMJ), Unexplained hair loss, Dilated cardiomyopathy, Visual disturbance, Loss of temperature control.
For me I had bizarre sensations to touch, especially on my back. The sensation started when I was about 14 right under my shoulder blades and continued to grow and expand across my entire back and even around my sides. The sensation is similar to someone with shingles. Only I never developed a rash and the pain never went away. I would avoid hugging people at all costs and some days I couldn’t get dressed because it hurt so bad. When I was 18, I went through a super dark period of depression and I remember crying because my shoe wouldn’t stay tied. That was a rough patch for me but I got put on another drug and continued with my life. Probably six months later, my eyes stopped working together. It was so hard to describe what I was seeing and I was scared to death to drive because I couldn’t tell which lane I was in and which lane other cars were in. It was such a blessing when one of my doctors figured out my eyes weren’t tracking together. It was awful. By the time I was 20 I had seen nearly every neurologist in Northern Nevada and had a referral to UC Davis. I had medicine for the sensitivity in my back to dumb-down the nerves, medicine for my eyes to work together, and depression medicine. None of the neurologists found anything as the cause to my symptoms and would just symptoms manage my pain and sensitivities. I had one doctor tell me I would never be able to have children because of all the medication I was taking. This was the last straw for me but I was more brokenhearted about never having kids than anything. I privately arranged to talk to each of my parents to tell them I would be able to give them grandchildren and cried as I told them the reasoning. For them, the was a huge wake up call. They knew I had pain and strange symptoms but never imagined it would impact my life like it was. They were in alliance to team up and get me the help I needed. We had to find the root cause to all these issues.
My symptoms seemed to be getting worse as I was more stressed with finding a cure. I also had taken on a huge promotion and was full-time in school. None of these things helped, but I was able to manage my life enough to keep all areas of my life happy. Any moment I was not at work or school I was in bed exhausted and sleeping. I had no social life. I was giving 100% and was running out of steam. My boss was great though, because If I woke up and didn’t feel safe to drive into work yet, he was totally supportive and would have me work from home and come in as soon as I could. One morning I clearly remember laying in my bed starring at the ceiling fast-forwarding my life and seeing that I would be stuck in bed in the next few years if my body kept going downhill like it was. I had to find a reason to all this.
A couple of weeks after that realization, my balance started being all messed up. I got out of my car wearing heels, like I had multiple times each day for the last two years, but this time was different, I couldn’t quite walk right. All I could think was “You’ve got to be kidding me….I have to make it inside to my desk….no matter what.” I used to be a gymnast and really thought I had good balance, until now. And when I lost it, I lost it fast. So I switched to flat shoes for work and just did my best. Later on that week I had another new doctor to see who would hopefully give me some answers. I didn’t have much faith in her because I was really waiting for my appointment to get into UC Davis, but I agreed to let my mom and step-mom each take me to a doctor that “was a miracle worker” for someone else we knew. I walked into Dr. A’s office with my big binder of test results, doctors notes, symptoms, and timeline. She sat down and looked over my stuff for about a minute. Then she very sweetly and softly looked me in the eyes and said, “Elizabeth, I want to run some tests, but I think you have Lyme disease.” I had never heard of it before but she provided me and my mom with a little education and I left the doctors office crying tears of joy. I actually had an answer and it made sense! I started my Lyme treatment that day November 9, 2010 with oral antibiotics. We proceeded with the blood work through Igenex and I tested positive for Lyme. All my bizarre symptoms had a name! I wasn’t crazy! I was angry at my other doctors for not knowing about Lyme, but I learned that it is considered an “East coast disease” so most doctors aren’t trained or educated about it, therefore, I couldn’t be too upset with them.
The next thirty days were scary. I lost about 10 pounds because the medicine made me extremely sick. I couldn’t leave my house. I remember a phone call with my mom where I told her I really needed to go grocery shopping and she assumed it was because I couldn’t afford groceries so she offered to pay for them…..I told her it wasn’t a financial issue it was that my body was so weak I literally couldn’t get out of bed to go to the grocery store. I called in sick many days at work and finally just used FMLA to stop going to work. My co-workers didn’t really know what was going on with me but they were all very concerned and everyone donated PTO to me so I would receive a full paycheck even if I wasn’t working. It was such a huge blessing. As a family we all decided it was best for me to move back to Minden to live with my parents. We still had our rental house in Reno which Justin stayed in during the week to go to work and school and he would visit me on the weekends. I had multiple people helping me get my medicine in and helping me to eat regularly. As December rolled around I was Christmas shopping from a wheelchair. I was very sick, but finally everyone now understood. It breaks my heart that anyone else would have to go through this disease. Justin has told me many times that I can’t just disregard years and years of medical research and not everyone has Lyme disease. I understand that, and I really agree. On the other hand, people all over the world go years without a diagnosis that have any combination of these symptoms and the one commonality between them is often the Lyme spirochete, Borrelia burgdorferi. I don’t wish this disease or any similar disease on anyone.