As most of my friends know, I caught Lyme Disease at our family ranch near Uvalde, Texas in 2008. I had spent that day outdoors and around horses. Over the next few days I noticed a strange bulls eye shape rash. I showed Eric as I had never seen anything like it, but we both thought it was nothing serious, maybe just a spider bite. We were wrong. The following weeks I came down with what I thought was the worse flu of my life. I never connected the two, and would continue to have a wide range of symptoms. Within a few months, my joints became so excruciating, I stopped exercising. It hurt to walk. I could not sleep due to the pain. Later, the bacteria would spread and affect my entire body. I had stabbing pains all over, blurred vision, eye infections, ear pain, headaches, stiff neck, muscle spasms, involuntary jerks, feeling of having a heart attack, panic attacks, memory loss, crushing fatigue, fever, total loss of feeling in my arms and legs, slurred speech, vertigo, Bells Palsy, encephalitis, lyme meningitis, and most recently seizures. I would find myself pulling over in my car, with no memory how to get home from a routine location. I had trouble walking, talking and thinking. The neurological symptoms were so frightening, at times I was not sure I was going to survive them. I was going down hill fast, and after visiting 10 plus doctors, and several trips to the ER, I was diagnosed with Rheumatoid Arthritis, Lupus, maybe MS, Chronic Fatigue, Fibromyalgia, Ankylosing Spondylitis, Mercury Poising, and Depression, from Houston’s finest. Even though I had classic like symptoms of Lyme Disease, with joint pain, Bells Palsy, and a Bulls Eye Rash, I was told by some of the best doctors, there was no Lyme Disease in Texas. I later would learn these are common misdiagnoses for Lyme Disease, and my story is a carbon copy to thousands.
I finally left the state and was tested through advanced labs and diagnosed by a Lyme specialist with Late Stage Lyme Disease, along with the co-infections Bartonella and Babesia. I now fly to California every six to eight weeks for treatment and will have to continue for several more years, if not longer. There are long waits to even see a Lyme literate doctor. I also learned that Lyme is a very political disease. Lyme Disease is curable if diagnosed early.
I recently joined the board of the Texas Lyme Disease Association, this organization educates the medical community and public on the dangers of tick borne disease. Not a day goes by that we are not contacted by a patient in Texas desperately seeking a doctor who will treat them for Lyme. Many of these patients are Children. There is not one pediatrician in Texas to treat these children! Most have gone misdiagnosed and suffer severe neurological illnesses and no longer attend school. Children are at most risk, as they play outdoors. Many, Lyme patients, find themselves without jobs and on disability. To make matters worse, most Lyme treatment is not covered by insurance companies. Lyme patients are isolated and left to deal with a debilitating disease, without a treatment plan from the medical community, and support from friends and family, as the disease is not understood. This is a tragic situation occurring in our city and state. Meanwhile, the public has no knowledge of this threat. This emerging epidemic is not going away on its own, and will only get worse if not given attention.
TXLDA has begun educating physicians in the complex treatment of tick-borne diseases, but we continually fight the misperception that there is no Lyme in Texas or that, if there it is, that the problem is small. Recent research at Texas A&M is finding 1 out of every 4 ticks carry Lyme, these numbers are up quite a bit from previous years. The bacteria has been discovered as close as the suburbs of Houston. The Bush Presidential Library has just requested that this research be exhibited at the library this spring.
At present, the state of Texas devotes no funds to this, the greatest public health threat, more prevalent than AIDS and West Nile put together, and only the TXLDA is bringing accredited CME courses on Lyme to Texas. Many Lyme sufferers across the country report passing this infection to their children in utero or passing it to their spouses. These findings are supported by Lyme literate physicians. The TXLDA has joined forces with the Tick Borne Disease Alliance, out of New York. They are a national organization that is aware of our crisis. Currently we are still looking for funding and sponsors.
Protect yourself and your families! Most people never see a tick, or a rash. Standard testing for Lyme many times shows false negatives. Educate yourself about this disease and its symptoms.
Please help us raise awareness of this severe public health threat!