As I was taking my children to school I noticed my maintenance light was on and I was almost out of gas. This explains my daily life. I am constantly running on “E” and require tremendous maintenance. As a child my nickname was, Busy Lizzy, I was always on the go and very active. As an adult I became a Gym Rat, Loved Yoga classes, Zumba classes and exercising in general. I eventually planned on getting certified to teach Yoga. Blessed with three kids and two dogs and a wonderful man, my life to me was perfect in so many ways. I was very active in my children’s’ schools, and sports, I never missed a game or even a practice.
Now today, I sit in pain in my bed wishing I could turn back time. Chronic Lyme disease has taken so much from me. I went from a Gym rat to a Lab rat, but I will not let it define me in any way!
My journey with Lyme disease started with classic symptoms. I noticed one day in 2010, I could not close my eye as I was putting on make up…it got worse after a few hours. I went to the hospital and was diagnosed with right side Bell’s Palsy, and Venous angioma in the right frontal lobe of my brain. The Doctor told me to follow up with Neurologist. My Bell’s Palsy only lasted about a month so by the time I got to see the Neurologist, three months later, I was fine and not worried at all. Until I got Bell’s Palsy again five months later, then again three months later, then had a seizure in October 2012. Then the Bell’s Palsy was on my left side of face, and I was having severe neurological issues.
I think in total I saw about ten specialists. Six different neurologists, until I was finally referred to the Mayo Clinic in Minnesota. My first day at Mayo Clinic was $14,700. On the third day, I found out I tested positive for Lyme disease. I was actually excited. I was relieved, because I actually had something treatable.
The doctors in Texas just told me I was crazy, it was all in my head. The Mayo clinic did not treat me for Lyme disease because it was not found in my spinal fluid. So if you haven’t heard the expression, ” Hold the Mayo” I will tell it to you now. The Mayo clinic did not treat me nor help me. Just left me $27,000 in debt. I do believe the Mayo Clinic is a great hospital but in my personal experience, it was a waste of time and I left empty handed.
I came back to Texas to my PCP and told her I tested positive for Lyme disease. She referred me to Neurologist, who did not believe in Lyme at all and said my test was most likely a False Positive.
That was just the beginning of three awful years of sickness and confusion. As I got sicker I saw an Infectious Disease doctor who was determined to help me. She ran blood test then a week later she admitted in the hospital for viral encephalitis, caused by VZV, shingles virus.
I got a Picc line put in, and had six weeks of antiviral meds. I actually did get better… Until they took out my Picc line and six days later I was hospitalized again for a week. My doctor was clueless. Actually by this time I had a team of doctors, and they were all clueless. So, I got another Picc line and had six more weeks of IV meds. Unfortunately, I got a pretty bad blood clot in my picc line so I had to have it removed and had a port placed the same day. Again, I started feeling better on IV antivirals.
I decided I wanted to look at ALL of my test results: blood work, MRI’s, spinal taps, all of it! My doctor went over all my labs with me, and my EBV, CMV, VZV and pneumonia virus IGM were all elevated and very high. She explained I must have an underlying Auto Immune issue that she wanted to investigate further.
Nine spinal taps, dozens of MRI’s, countless blood work, urine samples, stool samples later, she could not figure me out. Nor did she believe in Lyme disease.
I decided to get all of my past medical records and do some investigating myself. I decided to see a Holistic Doctor, who spent three hours going over my medical records. The first question she asked me was what antibiotics I took and how long for Lyme disease. I told her I was never treated for it at all. Then she began to “peel back the onion.” She stated that my ID doc was simply treating my co-infections of Lyme disease. We must treat Lyme disease first! We started off doing IV Vitamin C, Glutathione, Bicarbonate and Magnesium IV for 6 weeks. (out of pocket) Then I started antibiotics and rotate weekly.
My homeopathic doctor believes my Lyme infection is well beyond my years, meaning I was born with it. Which makes complete sense because my sister has been sick for over sixteen years with multiple sclerosis, and my Mom has had the “fibromyalgia stamp” for over twenty years.
I’m still under treatment and have my good days and bad. I over do it a lot but I do not regret those days.
My story did not start off with any recollection of any sort of tick bite, but I can tell you this, my story will end with remission. I will not let Lyme disease take over. I wake up everyday and kick its A$$!
I think that’s the type of attitude and determination we all have to have while battling this awful disease. We all must spread awareness or ” come out of the closet,” as I call it. We are not alone. I’m thankful for all my ” Partners in Lyme,” I have met over social media. We must stand strong and stand up together against the FDA and CDC. I see positive changes for us Lymies in the near future. We must stay positive on this rollercoaster ride. Hang on tight, fasten your seat belts, take notes and learn from this journey! I know I am a better person for having to deal with this disease. I know you will be too.
The treatment plan that works for me may not work for others who suffer with Chronic Lyme disease and vice versa. We all must find our healing path on our own. Through trial and error and most of all education!