July 4th weekend in 1988 we were at our lake house on Lake Travis. We would ride our 4 wheelers through the grass, which the grass was about a foot tall. We got in a nymph nest and had 100s of very small ticks all over us. Myself along with my husband, daughter, sons and in laws were bit. They were even crawling out of one of my son’s ears & diaper. We were freaking out! I boiled our socks and there were 100s of dead ticks floating in the water. It was like a plague.
After arriving back home, we had new neighbors that had moved in while we were gone. Being a friendly bunch, we went over to say hello after cleaning up. My 1 year old was just wearing a diaper and had his hair combed so cute. After introducing ourselves to the new neighbors, we learned they were from Lymes, Connecticut. She became alarmed after seeing my 1 year old’s “bulls-eye rashes” on his back. She told me that I needed to see a doctor immediately & that those were signs of Lyme Disease. She warned me that the doctor might ignore it and say it wasn’t. I checked on everyone else, but no one else had the rash at that time. As I was getting ready for bed, I found three bulls-eye rashes along my bra line. I got up early the next day and drove to our general practitioner. He said there was no Lyme in Texas. I didn’t stop there. I asked to see his medical journal to see what a Lyme Disease rash. His jaw hit the floor when he saw it was identical to what we had. I told him my entire family was bit. He put each of us on 10 days of Tetracycline (which we now know was not enough).We all started to feel like we had the flu and our brains felt like they were disconnected from our bodies.
The evening we had finished that round of antibiotics, my daughter started getting little marble sized knots at all of her joints. By morning I heard her scream. She came in our room and looked like an alien. All of her large joints were the size of cantaloupes and small joints as big as golf balls. I rushed her to our doctor. He was stumped and sent us to an Allergist. Him and his team of doctors had no idea & gave her Benadryl before sending her to the ER. The ER doctors stood around scratching their heads and finally sent us to an Infectious Disease Doctor. The Infectious Disease Doctor did not believe there was Lyme in Texas. He finally decided it was the first case he had seen after examining her. He then prescribed her another month of antibiotics. She did fine after that, except her joints were painful from time to time.
Shortly after our 10 day antibiotic, my 1 year old and I started having the craziest health issues. I started getting pneumonia and since my initial tick bite, I have fought that battle 18 times. Each time I got pneumonia I was given cortisone shots. It got harder and harder to get well. One episode even lasted for 7 months and I was sent to a Critical Care Doctor who didn’t think I would live. My son & I had allergies that got worse and worse. When I would go to the doctor and list all of my symptoms, I was given antidepressants and ultimately sent to a Psychiatrist. I kept telling them I wasn’t depressed, just sick. I began to have racing heart episodes and symptoms similar to MS. My heart rate at time was over 200 BPM. It was like I had ran a marathon. It was scary and exhausting. I finally had a cardiac ablation. My hormones were extremely imbalanced as well. I was diagnosed with diabetes and had thyroid issues. The bacteria was attacking every organ in my body. My energy became non-existent. I got to the point I was sleeping 23 hours a day. I finally went to a Chronic Fatigue Doctor, who did allergy testing as well as several other panels of blood work, one which included the Western Blot. The next day a heavy flu like pain came over me. Then electric pain started radiating from my shoulders down to my feet. It was so painful. The doctors didn’t know what to do.
When I went back for my follow up appointment. I learned that I tested positive for Lyme Disease. Within a few days after my appointment and hearing my results, I got a letter saying she could no longer be my doctor. Feeling helpless, I called the Infectious Disease Doctor we had seen years before. He would not take me as a patient either, and the list goes on…Scott and White Infectious Disease Department wouldn’t treat me as well as the Mayo Clinic. I started asking around to find a doctor that treated for Lyme. I was referred to one of best in the country who had her license taken away for treating for Lyme outside the narrow definition the Texas Medical Board mandated. To see her I would have to travel to Washington DC.
Not giving up my search, we finally found a doctor in Texas treating Lyme patients under the radar. He prescribed us an oral antibiotic for a year. We were doing IV infusions 5 days a week, 5 hours a day for 2.5 years. We were getting better except for our nuero issues. I was constantly losing my balance, having word block, brain fog and skin nerve pain. My falling over got worse which led me to a really bad fall in November. I have had 2 surgeries to repair my body and another next week.
With Lyme, it’s hard to get your thoughts in order, which has made me leave out so much that is so important to know about this debilitating disease.
My son’s spine was very infected. His spinal cord is in a small tube and his vertebrae is like a 65 year old man and he is only at the age of 26. He lives with great pain. He has major sleep disorders and holding down a job is impossible. My in-laws both were diagnosed with dementia from Lyme Disease and have now passed. They have donated there bodies to science. It’s sad my families life was turned upside down due to the ignorant doctors!