While the story below only catches a brief glimpse of what I went through during the last 3 years, I hope it sheds some light to help others feel less alone in their pain and suffering, and to bring some awareness to this horrible and devastating disease.
- My story begins in the summer of 2000. I had just moved to Austin Texas after graduating from the University of North Texas. I starting working as a nanny for a wonderful family. I loved Austin because it was so different than Dallas and Denton, so much to do outside, so much nature. My apartments were even settled in a woody area that was backed up against the Greenbelt. (a stretch of wooded area with trails and creeks) I was also involved with a local church and I remember going on a youth camping trip (in Austin).
It was either at this camping trip or somewhere around my neighborhood that I got bit by a tick. (I never saw a tick and didn't have the classic Bull's Eye Rash) I woke up with a strange rash over my chest, back, and face. I went to the local Emergency care place, and the doctor said he didn't know what it was. One of the nurses looked at me and said, "Honey, I think you have Lyme Disease." But instead of testing and treating me for it, they sent me on my way with a recommendation to see a dermatologist. I had no idea what Lyme disease was, so I went ahead and got an appointment. The dermatologist had no idea what my rash was either, and wanted to take a sample of my skin for testing. Meanwhile, I emailed my old dermatologist and asked her what her thoughts were. She said that Lyme rashes are not usually on the face, and it was probably a benign rash. She even had a fancy name for it. Well, I trusted her judgement, since I didn't have any other symtpoms and my rash was fading. I eventually went on with my life. I never would have thought that those decisions would haunt me ten years later and I would be fighting for my life.
Fast forward through a college degree, getting married, and having three beautiful girls. I was basically healthy besides some strange episodes of vertigo. (The bad kind where the room spins and spins). I had every test under the sun, and saw 6 different specialist, but was diagnosed with Benign Positional Vertigo. I had a really bad spell of it after my second child, but eventually recovered. I also had a miscarriage during this time. But it was after my third child that all hell broke loose.
It was exactly 3 weeks after giving birth. We had a 3 year old, a two year old, and now a newborn. I went to bed and noticed my finger start twitching. It was just really annoying, although I didn't think much of it. After a couple of days, the twitching spread to my toes. After a week, the twitching spread to all over my body. I was starting to freak out and do some research online. I kept getting information for Parkinson's, MS, and ALS. We went to my regular MD who thought it was a vitamin deficiency. Negative. I also had extreme weakness on my left side of my body, and I couldn't do any fine motor skills with my hands. She referred me to a neurologist. I had some nerve tests done and some MRI's of the neck, spine, and brain. She was ruling out MS and ALS, or any neck injury. I was convinced I was dying of either MS or ALS even though all my test came back negative. I went to a second neurologist that specialized in Multiple Sclerosis. I had every blood test under the sun. I even had a Lyme test done, and although the first part, the Elysa, was positive, I didn't have enough bands on the Western Blot to be considered positive. I was told that it was negative. I went to a third neurologist (highly recommended), and he tested me for HIV, Lyme, and did a Lupus panel. My Lyme test had the same results, positive on the Elysa yet not enough bands on the western blot. My ANA test was positive (showing that my immune system was fighting something) but the Lupus screening was negative. He sent me to a Rheumatologist, who retested me for everything. He had no explanation for my symptoms and when I asked him about Lyme Disease, he said, "It's NOT Lyme Disease". When I told him about my rash ten years ago, he said, "There is NO such thing as Chronic Lyme Disease." I knew that was untrue because I had heard of a girl that went on seven years of antibiotics because of her Lyme Disease. He did insist I start some antidepressants. I refused. I knew I wasn't depressed. I was scared because nobody could figure out what was wrong with me. Needless to say, I stopped going to those doctors.
I got online and started researching Chronic Lyme Disease and how standard test are unreliable. I also learned about the controversy surrounding this disease, yet I still didn't know how hard the battle would get. My MD ordered the blood test and sent it to a special lab in California. It would be three weeks before the results. I was losing lots of weight and gaining anxiety as my symptoms increased. Now I was having disturbed sleep (having to take sleeping meds), electrical shocks up and down my body, nerve pain, muscle aches, cognitive problems, severe spine pain, sensitivity to sound and light, and numbness in my extremities.
I found online a Natural Clinic that specialized in Lyme Disease. I decided while we were waiting for my blood test results, that I would try it out. My husband was in full support and equally desperate to find me some relief. At the clinic, I was given some herbal remedies. One of the remedies had a natural antibiotic called Cat's Claw, or Samento. I didn't know what a herx reaction was, but I was about to experience my first frightening, horrific herx. (Herx - worsening of symptoms due to bacteria die-off). For the next two months, my symptoms multiplied by a hundred and blew me into a whole new realm of pain. I started having severe tremors, heart palpitations, anxiety attacks, panic attacks, seizures. It felt like someone was electrocuting me nonstop. I would lie in bed at night, wishing for death...begging God to take me. It was bad....really bad. My personality also changed, I had my first 'Lyme rages'. I put my family and friends through a lot of hurt during those times.
I did finally get my blood test back and I was positive for Lyme, Babesia, and Ehrlichia. I found a Lyme Literate Doctor and starting treatment. I know there is no cure for Chronic Lyme Disease, but I still want to give it a fighting chance. I have come a long way from where I was, and Im able to function as a wife and mother again. I do realize that I might have to be on antibiotics for the rest of my life. Hopefully, my story can help gain awareness to this horrible, devastating disease so that people can get better testing, get better treatment, maybe we can find a cure someday. I pray that for everyone, especially my family.
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1 day ago