"For patients with early-stage Lyme disease the illness tends to be mild, and a month of antibiotic treatment usually offered a cure. But for those who slipped through the cracks of early diagnosis, for people like us, infection could smolder and progress, causing a disabling, degenerative disease that confounded doctors and thrust patients into the netherworld of unexplained, unrepeatable ills.
Despite effectiveness of early treatment, withholding therapy had become increasingly common as a battle royal over Lyme's essence spilled from medical centers and clinics into the communities where people go sick. The same doctors who routinely doused acne and ear infections with years of antibiotic often would not prescribe even ten days of such treatment for Lyme unless proof of infection was absolute. Meanwhile, the few doctors willing to treat the sickest patients with longer-term or higher-dose antibiotics could be called up for trial by medical boards, putting their practices and licenses at risk.
The war over Lyme has raged for more than thirty-five years. On one side of the fight are university scientists who first studied Lyme disease, initially writing it up in medical journals as an infection of the joints. The disease they described was caused by the spirochete Borrelia burgdorgeri and transmitted to people by the bite of a deer tick. It was hard to catch, and easy to cure they said. Late disease was rare, these academics said, because Lyme was recognized easily through an oval rash - the so called bull's eye - and a simple, accurate blood test.
On the other side of the fight, far from the ivory tower, the rebel doctors and their desperately sick patients insisted that Lyme and a coup of coinfections caused a spectrum of illness dramatically different from the one the scientists described. Knees didn't always swell and the rash (rarely a bull's eye) often wasn't seen. Instead the patients were mostly exhausted, in chronic pain, and dazed and confused. The mental condition called "Lyme fog" robbed them of short-term memory, stunted their speech, and crippled their concentration. Brain infection could inflict a host of frank psychiatric problems from bipolar disorder and depression to panic and obsessive-compulsive disorder, they said, and Lyme could trigger what looked like autism. Because their illness differed profoundly from the disease described in textbooks, because it often eluded blood tests, the patients were undiagnosed and untreated for years.
One part of the problem stems from the lack of direct test for Lyme disease. There's simply no way to learn whether a patient is currently infected because as Lyme progresses, spirochetes leave the bloodstream and gravitate into solid tissue. This obviously makes it exceedingly hard to culture living organisms through an ordinary blood test. Instead of detecting infection in blood directly, therefore, doctors test for Lyme's fingerprints-the antibodies formed in the spirochetes' wake. Manufactured by our immune systems to try to fight the infection, Lyme antibodies are detected as literal bands on a test known as the Western blot. Because these antibodies can linger even when infection is gone, they indicate exposure at some point in the past, but do not confirm that infection is active at the time.
Another part of the problem stems from the imperfect antibody pattern chosen by the CDC and other experts to indicate a so-called positive. The pattern of the Western blot bands endorsed by the CDC was determined by analyzing blood from a group of classic Lyme disease patients, those with swollen knees and measurably damaged brain and nerves. (remember, a large portion of Lyme victims never experience the swollen knees, rash, etc. symptoms vary greatly) The test, therefore, reinforced the mainstream presentation of a disease with blatantly measurable signs while excluding patients who had only subtle symptoms like memory loss of subjective complaints like exhaustion and pain.
Yet the Western blot pattern endorsed by the CDC has been subject to furious debate ever since it was voted in amidst a firestorm of protest at a conference in Dearborn, Michigan in 1993. The pattern was determined by matching antibodies in human blood with a single strain of Borrelia from Europe, ignoring the full range of proteins expressed by hundreds of strains reported in the United States and worldwide. Of the many antibodies expressed just ten were deemed diagnostic. Chosen statistically, these included some so common they were found widely in the healthy population while excluding others specific only to Lyme disease.
Indeed, it's beyond dispute that patients with confirmed Lyme infection can fail the test for a host of reasons: Antibodies can stick to proteins in human blood, preventing them from floating free to interact with the test. Some strains literally lack all the proteins being tested for. And when patients with undiagnosed early Lyme have been treated with antibiotic for something else, like an ear infection, that treatment may be insufficient to cure the Lyme yet may suppress the antibody response to it forevermore. Even Immunetics, the company that manufactures the blot test, selling it to Quest and LabCorp has found that alternate Western blot banding patterns turn up more real Lyme disease patients, and are more precise.
The bottom line is this: Patients with the Lyme disease signs that mainstream experts say count - the swollen knees and frank meningitis - often pass the test with flying colors. Patients suffering mostly from the so called symptoms of Lyme disease, the fatigue and confusion, often fail. Like a castle on a hill surrounded by a moat, the mainstream definition of Lyme disease is a monument to itself: It houses within its impervious walls patients who fit its paradigm, leaving the rest clamoring for recognition at the gate.
The more I looked into it, the more I concluded that the very scaffolding of Lyme science was flimsy as a house of cards. Take the simple issue of how many Lyme disease patients get the famous rash. As I read through years of literature in medical journals, including the early work, I found the estimate ranged from 40 to 90 percent. The different statistics results, largely, from entrance requirements for the studies themselves. Where the rash was required for diagnosing Lyme in a given study, authors invariably concluded that most patients had the rash. Where patients were diagnosed based on other factors, for instance, positive blood work, the percent with the rash dramatically fell."
This is a small portion of this amazing book that so clearly explains why countless patients fall through the Lyme cracks being misdiagnosed for years, or never at all. It was my own relentless search for answers that lead me to the belief that Butch has Lyme disease. I then dug deeper finding doctors who understand the disease and are willing to treat chronic Lyme. We will soon begin Lyme treatment, which is often times a long and windy road to recovery. Reading this book has given me the insight and motivation to document our journey with Lyme. Maybe our journey will help someone else one day, just as Pamela sharing her journey is helping me now. Below is the first insert from my documentation:
My husband, Butch, and I have been together for eleven years. The first eight years of our life together was filled with luxury, excitement and travel. As Unexploded Ordnance Technicians (Bomb Technicians) we traveled the globe together living life to the fullest. There were 4-wheelers and motorcycles, weekend getaways, camping trips, hikes and bike rides. Those eight years are now compartmentalized in my mind as a completely different life all together. It is as if I lived these eight years with an entirely different man by my side. Looking back, those long-ago happy thoughts seem like a dream. The struggles we faced prior to his illness are laughable compared to the present day nightmare we have learned to endure together.....
No comments:
Post a Comment