Oversight Hearing
Lyme Disease: A Diagnostic and Treatment Dilemma
Senate Committee on Labor and Human Resources
August 5, 1993
430 Dirksen, 10:00 AM to 12:00 PM

Carl Brenner

Thank you for inviting me to appear here today. I used to be a working scientist. In the late summer of 1989, while visiting my parents in the Poconos, I took a half-hour recreational walk through a local field, after which I removed several ticks from my arms, legs and torso.

Several weeks later I went to Australia on a business trip. While there, I had a severe flu-like illness that involved a sore throat, ear infection and the most intense headache and fatigue that I had ever experienced. I remember feeling a mixture of astonishment and alarm over my condition, but I assumed that the fatigue was due at least in part to jet lag and the extremely heavy travel schedule that I had been on over the previous year. In any case, I seemed to recover gradually from the illness over a period of two weeks or so and returned home to Rockland County, NY to resume my normal activities.

Over the next few months, however, it became clear to me that something was terribly wrong. I was having bouts of migrating joint pain, headaches, irritability, sleep disturbance. I was experiencing steadily increasing fatigue. Although these symptoms were quite bothersome, I was reasonably functional for a while. The first few of the 20+ physicians I was eventually to consult all assured me that I was perfectly healthy. None of them ever suggested Lyme disease as a possible cause for my complaints, and it certainly never occurred to me that I might have it. The message from the physicians to me was: "This is not really happening, you are not really sick, your symptoms are all in your head." I was referred to a psychiatrist, whom I willingly consulted, since by this time I had become quite depressed by my predicament and my rapidly diminishing tolerance for any kind of physical or mental activity. I was particularly frightened by the fact that I was having significant problems with concentration and focus at work; I was concerned that I might lose my job.

I struggled silently with my symptoms for over a year, but by the spring of 1991 I felt as if I were nearing some sort of breakdown. Sinus surgery was suggested as a possible solution to my persistent headaches. It didn't work. My symptoms expanded to include crushing fatigue and periodic attacks of paralysis on my left side. It was clear to me by now that I had some sort of serious illness; nevertheless, it was suggested to me on more than one occasion that my symptoms were hysterical in nature. My psychiatrist, on the other hand, had become convinced that I was in fact suffering from Lyme disease, and at his suggestion I began to read up on it.

In July of 1991 I had a consultation with an infectious disease specialist and a rheumatologist at a major university hospital, during which I asked about the possibility of my having Lyme disease. I was told that my symptoms sounded "completely unlike" Lyme disease. I was offered antidepressants, this despite the fact that neuropsychiatric evaluation showed that I had organic deficits in memory recall tasks (a common manifestation of late Lyme disease) and no underlying personality or mood disorder. Once again, despite evidence to the contrary, the message was: "This is not really happening to you; the problem is all in your head."

I was finally diagnosed with Lyme disease in August 1991, two years after the onset of my illness. I was treated with oral and then intravenous antibiotics for a total of almost six months. In August of 1992, still severely symptomatic after having been off treatment for six months, my urine was probed for spirochetal DNA via the polymerase chain reaction. The results came back positive, indicating active infection. Follow-up assays performed on both urine and spinal fluid were also positive. I was hospitalized and put back on intravenous antibiotics in October of last year, during which I had a classic Jarisch-Herxheimer reaction -- also an indication of active infection -- marked by fevers and a radical worsening of my arthritic symptoms. The treatment was unsuccessful; over the past winter I was completely crippled, unable to even stand in the shower. While the arthritis later abated somewhat with further treatment, I am now unable to either work or look after my daily needs and have been living with my parents since last autumn.

I am deeply uncomfortable with my assigned role today of "designated Lyme victim," but I have lost almost everything of value in my life to this disease -- my career, my mobility and worst of all, my autonomy. And there are many Lyme patients who are worse off than I: people cleaned out financially, uninsured and unemployable, children in wheelchairs. Over the last year I've talked on the phone with a wheelchair-bound former special education teacher from Westchester who contracted Lyme on a class outing and who now suffers from a horrendous seizure disorder; these phone calls have now ceased because she can no longer speak. Another Westchester woman, also disabled, had the Lyme spirochete cultured from her spinal fluid after many months of high dosage antibiotic therapy. Both of these women were told repeatedly that their symptoms were psychosomatic and not attributable to borrelial infection: "This is not really happening to you; it is all in your head."

I've been asked by the Committee to comment on how Lyme disease has influenced my career path. I don't know what to say other than it has destroyed it. Before my illness I was a marine geologist at Columbia University, involved in research and science management on an international level. I hadn't taken a sick day for years. I had some contacts in Washington and was hoping eventually to come here as a Senate staffer on science matters; perhaps I might even have worked for one of you. Instead, I am now drawing disability.

You ask about the experience of being a chronic Lyme patient. To be a chronic Lyme patient is to be caught in a Catch-22. There seems to be no incentive for anyone to acknowledge that we exist. The entrenched institutional denial of both the scope and intractability of chronic Lyme disease has devastating effects and shows no signs of abating. It causes delays in diagnosis, which often allow an acute illness to become chronic, as it did in my case. It limits access to antibiotic therapy at all stages of the disease. The researchers note the persistence of symptoms after treatment but do not admit that their treatment recommendations are often inadequate. The insurance companies, who don't want to pay for longer term treatment, hire these same researchers as consultants, who predictably say that we are "cured," despite ongoing symptomatology and considerable scientific literature documenting the persistence of the bacterium after treatment. Meanwhile, NIH allocates virtually no resources at all to research on chronic Lyme.

I am a scientist by vocation and a skeptic by nature, but I am here today to tell you that this is happening, that we are real, and that I am not some rare anomalous case that slipped through the cracks. Lyme disease has already destroyed the lives of thousands of productive Americans, with untold thousands more persistently infected and standing on a precipice.

Finally, the many controversies surrounding Lyme disease are due in part to the lack of hard data that can be applied at the individual patient level. As a result, discussion on the prevalence of persistent infection has degenerated largely into a game of "dueling anecdotes." The existence of new direct detection techniques now gives researchers the opportunity to explore this question in a systematic fashion. Please urge NIH to focus its funding efforts on the etiology of chronic Lyme disease with an eye toward developing a permanent cure for this affliction.

Thank you.