Statement to the Texas State Senate

Lyme Disease Statement and Testimony
Texas State Senate Committee on Administration
Interim Hearing on Tick-Borne Diseases
Austin, Texas
March 16, 2000

 “Aaaaaaaammaaaaazziiiing  Graaaaaace.….How  sweeeet  the soouunnd…….”  Her words inspired me.  Standing off stage, I was awaiting the cue that was to signal the time for my performance – the time for my entrance onto the stage.  At the Miss Texas scholarship pageant in 1991 I was next on stage to do what I enjoyed most in life – playing the piano, singing and entertaining.

Perhaps her words held such significance because Grace had truly brought me there.  As a twenty-year old senior at Baylor University, I was on the road into which all of the paths of my life – since childhood – had merged… Music:  I had learned to play the piano and read music before I learned to read words.  I seemed to live, breathe and exist through music.  Academic Excellence:  After completing high school through home-education, and beginning college at sixteen, I was soon to graduate, with honors, from Baylor and continue study in a graduate degree for which I had been offered National and International scholarships.  The Dean’s List had included my name every semester of my college education, and I was in the top five percent of the junior and senior classes at Baylor.  Motivational Speaking:  Throughout previous years, a strong compassion for people had carried me into high schools, churches, prisons and inner-city streets across Texas, delivering a message of inspiration and hope, through singing and speaking.  And now the opportunities were increasing, including television and radio appearances.  Job offers had been made in careers I had never even considered.  Social life with friends on campus was fulfilling.  And my participation in Miss Texas was providing excellent training in music, communication skills, professional polish and poise – a training ground of which I intended to take advantage.  The ‘stage’ of life was awaiting my entrance.

I was on top of my world in every way!  Three years after having experienced a severe flu, with neck pain and months of lingering weakness, (the beginning of undetected Lyme disease), I now seemed to be the strongest, most physically fit and energetic I’d ever been.  It had taken quite a lot of perseverance and exercise to overcome the weakness.  Daily, strenuous and vigorous exercise was required to keep the energy – two and a half hours of weights with accelerated heart rate, followed by at least a four mile run – but I enjoyed it.  I had always been athletic and I loved working up a good sweat.  And besides, the physical conditioning sure made it a lot more conceivable to ski black and include a few jumps – even if some were accidental.  Yes, life had never been such a blast!!

Four weeks later, my right hand and forearm began to be stiff and feel burning pain — similar to the pain and stiffness I’d been feeling in my neck for several months.  (This was early-stage dissemination of Lyme)  Assuming it was temporary I ignored it.  However, as time for intense piano study drew near, it became necessary to consult a physician.  After several months I was referred to a hand specialist, who not knowing a better diagnosis, told me it was tendonitis, sold me a hand brace, told me to rest the hand and then sent me for psychological counseling and biofeedback.  Yet, the problem persisted.  Upon his advice I dropped piano, and completed classwork orally.  Five months after the so-called tendonitis had begun, an internist, after learning that my feet had been swollen for almost a year and my knees also hurt, suspected a connective tissue disorder and Lupus.  His tests showed a positive ANA.  He referred me to a rheumatologist.  Though a bit shaken, I still believed it wouldn’t last long, would be treatable, and I would get back to the piano.

As my parents and I sat at the doctor’s desk, awaiting confirmation of the Lupus diagnosis any underlying concern was banished.  “I see this all the time.  It’s just fibromyalgia and has occurred because you are a type-A personality,” said the rheumatologist.  “Just have fun.  Enjoy life.  Don’t try too hard to keep up your grades.”  Wow!  That was the cheapest, most enjoyable prescription I’d ever been given.

That wasn’t too bad for awhile – intentionally not studying, sleeping late, skipping school to go snow skiing…No, the prescription itself wasn’t bad at all.  But the missed diagnosis was.  It handed time to the disease.  Time it needed to progress to a deeper stage.

Six months and a few more incorrect diagnoses later, (in 1992 – a year after early-stage dissemination had begun) I became very fatigued and drowsy almost overnight.  My mind became much too foggy to read a textbook and write a simple summary.  My voice was too weak to continue my vocal training.  And my low back stayed in intense pain.  I was forced to withdraw from school.  I didn’t know it then, but I had just left a world containing some semblance of health, only to be denied re-entry for many years to come.

The cycle continued as it had begun.  Physician after physician, test after test, diagnosis after diagnosis, more prescriptions and more therapies.  However, these were not so fun.  In fact, one misdiagnosis had contained almost as much trauma and violation as the disease itself, the cost of which was great emotional pain and an unfathomable financial burden.

It came after the diagnosis of Chronic Fatigue Syndrome.  A prominent diagnostic hospital in Temple, Texas, had among its staff, a respected physician in the Department of Infectious Disease, (who had previously been on staff at the Centers for Disease Control).  In that examination, I was told I must have been sexually abused in some way as a child and I just probably couldn’t remember.  That was most likely the source of my disease along with depression.  Nothing organic.  Only emotional.  Two tubes of blood were drawn, just to confirm nothing was wrong, and a nerve conduction test was done.  But I was given hours of psychological testing and was told I had to see a psychiatrist who was there on staff.

Because of my faith, and my belief that God is sovereign over everything, I stated then, (and happen to still believe,) that good will come from this experience in my life.  Statements such as that caused me to be labeled on the psychiatrist’s report as being “Pollyannish” and as viewing myself as virtuous.  Because I was “not…greatly anxious and/or depressed over my symptoms,” I must have liked having them, he assumed.  “She asserts a high degree of social skills…She may attempt to control others by complaining of physical symptoms.  Quite outgoing and sociable, these people have strong needs to be around others,” he said.  I was told that learning stress management skills, and merely determining to resume regular activities were what I needed to do to get well – given, as the doctors were certain, that the results of the few tests run would be negative.

The psychological testing showed that there had been no sexual abuse.  And there was no evidence of depression at that time.  Although the sedimentation rate was elevated, my thyroid was slightly enlarged, other blood counts were low, and a wealth of tests were omitted, including a test for Lyme disease, the conclusion of the Infectious Disease specialist was as follows:  “There are significant psychological problems.  Ones common among people who have Chronic Fatigue Syndrome – that of hysteria and hypochondriasis.  Therefore, my recommendation is that there be a concerted effort on the part of the patient and the health care provider to encourage the patient into slow steady increases in social interaction and daily activity.  I am dismissing her today.  I do not feel that the findings of low grade temperature elevations are likely to be significant.”

This report caused my insurance to cancel, consequently leaving me with years of medical expenses to pay out of pocket.  Over a year later, with other physicians testifying as to the true nature of my symptoms, I was labeled by this report to be psychosomatic.

In 1993, six months after having seen the infectious disease specialist, and after great persistence in following his treatment recommendation – determining to exalt mind over matter – further deterioration ensued.  And the cycle continued.  As my eyelids drooped, my voice faded to a whisper, and my walking gait became small and deliberate, I was considered as having myasthenia gravis.  It was then, due to the severe weakness, I was confined to a wheelchair when outside of the house.  As more neurological symptoms developed, Multiple Sclerosis was the diagnosis.  Then Mercury toxicity.  Then parasites… various autoimmune disorders…a cell-wall deficient fungus.  Every diagnosis bearing with it medicines and procedures to cure it.  All along the clinical picture was clear – had a physician known the characteristics of Lyme.  From heart problems, daily fevers, neurological involvement and breathing difficulty to muscular pain and deterioration, my medical history and risk factors, and everything in between, my symptoms could not have spelled Lyme disease any clearer had the word Lyme Disease been painted in the sky.  Lyme had been considered as a diagnosis several times, but the tests that we were told diagnosed Lyme disease had all been negative at that point, and would continue to be so for years longer – once again allowing the disease to advance in its progression.

And advance it did, unfortunately.  This time the disease consumed what was left of me – my mind.  I began to experience temporal lobe seizures, altered brain activity, dementia, and what felt like electricity in my brain and agony in my mind, all of which persisted 24 hours a day every day.  I could not eat, could not sleep, and was deteriorating rapidly.  Still without a correct diagnosis – and over 30 doctors later – I was put on steroids, one of the worst things that can be done to a Lyme patient’s health.  No longer could I even walk down the hall of the house.  I was so weak that I had to be lifted from the bed to a wheelchair, lifted on and off a portable toilet, dressed, fed and much of the time could hardly even chew.  The neurotransmitter levels in my brain were so low that they were barely even traceable.  I was not able to look at television, words, or even faces and get the images into my head.  But the electrical activity in my brain was sheer agony, inducing wailing and writhing that never ceased.  I existed in this condition for nine months.

Medical doctors told me to see psychiatrists.  Psychiatrists, in turn, sent me back to medical doctors!!!

At last, in late 1996, a diagnosis of Lyme disease emerged through the help of a research microbiologist and a culture of my blood.  A medical doctor willing to consider her findings, the factors of a clinical diagnosis and to repeat Lyme tests in a more specific manner, helped to solidify the Lyme diagnosis.  I.V. antibiotics brought great relief, but a relapse came quickly once they were discontinued.  An allergy to the material from which indwelling lines are made hinders further I.V. treatment.

Without I.V. treatment, I continued to live in what seemed like a nightmare for two more years, bedridden at least 90% of the time, and still in tremendous brain agony.

But now, through three years of intramuscular injections of antibiotics, oral antibiotics, and adjunctive therapy, I am experiencing improvement!  Though it is taking a considerable length of time to overcome the severe deconditioning, I am grateful for every  piece of progress.  I am now able to tend to my own personal hygiene and most of my daily needs.  I am finally able to sit up at a table to eat, walk outdoors, have brief telephone conversations with friends, enjoy the company of family, and for the first time in seven years, I am beginning to drive again.  However, the most precious gain to me is that I am now able to laugh.

But, I like many other Lyme patients, maintain this improvement only through aggressive, open-ended antibiotic therapy.  Because of this treatment approach I am regaining my health and my life!  For a physician to determine my course of antibiotic therapy upon research of individuals having localized Lyme, or recent short-duration Lyme, would be scientifically irresponsible, medically unethical, and for me physically detrimental.  But thankfully, some physicians have the courage to approach Lyme disease ethically.  They are genuinely interested in restoring the health of ailing individuals rather than submitting to political influences and adhering to incorrect scientific standards.  For those physicians I am truly grateful and upon them my health depends.

More than eight years, $400,000, numerous doctors and eight hospitals later, I can only fathom what my life would have been.  As a senior honor student my options were unlimited, and the years ahead held great potential.  Instead those years were spent housebound, bedridden, unable to even feed myself.  They were years descending into a dark abyss.  A descent that was completely avoidable.

Losing my health was difficult.  Losing my independence was devastating.  Losing my cognitive skill, my personality, my emotional health, my mind has been torture.  Being told I was just emotionally ill was inexcusable.  Being told this by the very people with the capability and responsibility to have prevented the severity of my illness is tantamount to criminal malpractice.

At twenty-nine, still battling Lyme disease, and without present assurances of a cure, the years that lie ahead can seem quite threatening.  However, advances in treatment and the development of a cure could change my future and the future of many other individuals suffering from Lyme disease.  Prevention and physician awareness can spare countless Texans the hardship endured from tick-born diseases.