Daniel B. Wood, Ph.D.
Lane County, Oregon

Total cost: $20,000
Number of family members with LD: 1
Lost work/school: 3+ years
Number of years sick: 5+

I am a 37 year-old, educated professional recognized worldwide in my field and a victim of Lyme and other tick-borne diseases. I am also a victim of a medical establishment that is reluctant to test or treat for these diseases, and that is why I am writing you today.

I contracted my initial tick bite while watching drift boats on the Willamette River, in July 1992 mere blocks from my home. While on a 105-mile bicycle ride several days later, I came down with flu-like symptoms including chills, fever and muscle and joint aches. Symptoms and a red rash around my navel persisted while enroute by car to a faculty position at a research university in the South, and I discovered the imbedded tick in my umbilical cavity while showering one evening some three weeks after arrival. I didn't know that tick bites can be painless and commonly occur in obscure areas where they are unlikely to be noticed and I didn't know one tick can carry multiple diseases. After a very rough night with a 102-degree fever, aches, delirium and extreme fatigue, I checked into the emergency room where the tick was removed and I was diagnosed with a bacterial infection and prescribed antibiotics.

Instead of getting better from such a seemingly small incident, I became worse. Much worse. in the days that followed, I was clinically diagnosed with Lyme disease by a local practitioner and received the first of what was to become a two year-long course of antibiotics. In the meantime, I began to struggle with increasingly severe symptoms. Amidst the stresses and strains of starting a new job, I developed excruciatingly painful arthralgias and myalgias, tremors, weeping skin rashes and disturbed sleep. I became forgetful and had great difficulty in performing sequential tasks. I frequently had to excuse myself from lectures and dash down the hall to the restroom to vomit. I became terribly weak with debilitating fatigue and I experienced trouble with my eyes and perceptions. My vision blurred, my eyes became grainy and I developed many "floaters". But worst of all were the changes in perception as I began to experience difficulty in writing, editing and proofreading text. I found I couldn't "see" errors and began to experience dyslexic letter reversals when writing. Even my handwriting deteriorated to the point where I had to provide my bank with a new exemplar to access my account. It became difficult to find the words I wanted in conversation and while lecturing and stress began to mount as I found myself searching for words in my very public position. Normally neat and groomed before my classes, I took extra shirts to work as I would drench 5-6 daily with heavy sweats. It became hard to regulate my temperature and my feet and hands would frequently be cold to the touch while my torso was feverish. For much of this time, I ran subnormal temperatures while dripping with perspiration.

When the soft-money for the position ran out, I returned home to continue my counseling business and received another year's treatment of oral antibiotics from my primary care provider. While the symptoms would occasionally improve for short periods, they always returned and I never quite regained my previous levels of good health. Thus began a steady decline which continues.

In time, I developed severe thyroid difficulties--Graves disease, Hashimoto's thyroiditis and a toxic multinodular goiter. I responded poorly to steroid treatment and three treatments with large doses of radioactive iodine failed to address the thyroid difficulties. I developed several hundred unusual benign lipomas throughout my lower back and thighs, and found my energy dwindling to the point where I was frequently bed-bound and unable to do more than the simplest tasks. Neurological anomalies persisted.

I went from being an active, healthy, vibrant adult to one who could barely function. I went from living independently to living with my elderly parents as I found I was not well enough to consistently hold any job outside my home. In time, even my consulting business went by the board as I struggled with the constant, debilitating fatigue and pain of my symptoms. Previously, I had bicycled 8,000 - 12,000 miles annually. Now, I could barely get to the mailbox on my worst days. I went from riding 100 miles 3-4 times weekly to napping after a car drive to the grocery store.

And yet, the intermittent, remitting nature of my symptoms led to misunderstandings and disbelief as days of bed-rest were followed by 30-mile bicycle rides and "good" weeks, only to crash once again as I struggled to be "normal". It caused a sense of shame and diminished self-esteem. Friends doubted and abandoned me. Colleagues lost patience. Family stayed by me and supported me, and for that I will always be grateful.

As difficult as it has been to bear and struggle with the symptoms of these tick-borne diseases, it has been as bad or worse to deal with a medical profession that is mired in denial and dismissal. With the exception of the initial treating physician and my own primary care physician--who was forced to leave her practice for making outside referrals--I have been belittled, denigrated and suffered outright abuse by medical practitioners who accused me of malingering, hypochondria, and abuse of medical profession. I was "fired" by my most recent internist for seeking outside referrals and repeatedly prescribed antidepressants with no clinical history of depression, a condition widely regarded as responsible for my constellation of symptoms.

In the past five years, I have seen more than 25 physicians seeking to alleviate my ills. Despite asking, begging and demanding to be tested to determine the possibility of continued tick-borne infections, I was universally refused. I was told I was depressed, diagnosed with lupus, rheumatoid arthritis, fibromyalgia, fibrocytis, a sleep disorder, that I needed surgeries. I have been yelled at, screamed at, sworn at and cursed by doctors who have ordered me to leave their offices after asking them to perform a simple blood test. I was told I could never have contracted Lyme or other tick-borne diseases because "We don't have them here", "Because you haven't been anywhere they are", "Because they are so rare", and--despite previous medical documentation--"Because you only think you were bitten by a tick and probably never were".

And now, after recent testing has shown I am positive for babesiosis and ehrlichiosis infections, I must now turn my efforts toward finding a physician out-of-state who is willing to treat me for these documented, detected illnesses and test for the presence of any remaining Lyme disease. Even the physician who finally administered these tests has asked me to seek treatment elsewhere.

As an individual, I regret the pain, the loss in life-quality. I regret the time lost, the damage to my career and the cost to myself. As a respected policy analyst and researcher, I regret the cost to the insurance company and society as many dead-ends were explored because of a refusal to consider Occam's razor and the most likely possibilities through the simplest and most cost-effective means--timely blood-testing through proven and repeatable methods correlated with clinical presentation. And I regret my loss of faith and trust in a medical profession that has refused to acknowledge and treat a growing health threat, dooming countless others to a fate such as mine or worse. I can't see the situation getting better soon; the tick is an efficient vector for disease transmission and the incidence of infection is already widespread. How long will denial continue? What would you do if--when--you, a friend, a lover, spouse or child contract a painful, debilitating tick-borne disease? How high will the costs mount? How many more will suffer needlessly?

I am real. This is my story. Will it be yours?