Lyme disease is a tick-borne illness caused by the spirochete Borrelia burgdorferi and other related Borrelia species. No one denies its existence, but the real controversy lies in its chronic form: whether Lyme can become chronic and if so, whether this protracted illness is caused by a persistent infection, or by something else, such as an immune reaction.
Pamela Weintraub is a science journalist and the author of several textbooks. She is also a woman whose whole family – she, her husband and their two sons – all got sick with Lyme disease after moving from the city to Westchester County, New York. What was supposed to be a dream home surrounded by nature turned out into a protracted nightmare caused by Borrelia and other microbes carried by Ixodes ticks.
Weintraub's book Cure Unknown: Inside the Lyme Epidemic (St. Martin's Griffin, 2009, ISBN 978-0312378134) combines a haunting memoir of her family's medical nightmare with a meticulously researched history of a common but controversial infectious disease.
For the book, Weintraub interviewed numerous experts on both sides of the controversy, as well as many families afflicted by a chronic form of Lyme disease. There is a long list of references and notes at the end of the book.
The foreword is written by journalist Hillary Johnson, journalist and the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, which recounts the controversial history of another similar illness, chronic fatigue syndrome/myalgic encephalomyelitis. The controversial history of these two chronic infectious diseases is eeriely similar in many ways.
Misunderstood and Misdiagnosed Lyme Disease
Cure Unknown details the history of Lyme starting from Lyme, CT in the 1950s, where the epidemic in the United States initially begins. After many children are diagnosed with juvenile rheumatoid arthritis some parents become suspicious, because JRA is supposed to be very rare.
Even after Borrelia burgdorferi is recognized decades later, misdiagnosis prevails. Some patients are told they have amyotrophic lateral sclerosis (ALS or Lou-Gehrig's disease), but recover when treated with antibiotics. Others get diagnoses of various autoimmune diseases. But the most common misdiagnosis is depression, hysteria, hypochondria and variations thereof.
Chronic forms of syphilis (including infections of the central nervous system), caused by another spirochete, are well-known. Yet many researchers refuse to admit that Lyme disease could become chronic and insist that even advanced cases can always be cured by short courses of antibiotics. Weintraub's book includes plenty of evidence to challenge these claims.
Notoriously unreliable tests are used as a proof that there is no infection in the body. Residual symptoms are blamed on other causes. Doctors are persecuted for prescribing treatment. Insurance companies refuse to cover long-term antibiotics. Some patients succeed in achieving treatment but relapse when it is withdrawn. In some cases withdrawal of treatment had deadly results.
The book also discusses the important role of co-infections: other tick-borne microbes acquired together with Borrelia that may explain why "chronic Lyme" sometimes refuses to go away, such as babesiosis, anaplasma/ehrlichia, mycoplasma and bartonella. These bacteria and parasites plague Weintraub's family and many other Lyme patients.
Author Personally Involved With Lyme Disease
The elements of memoir and the researched parts of the book blend together well. Despite her personal involvement in the subject Weintraub manages to stay objective and well-balanced. An European reader feels it a shame the book is so focused on the United States, but a global approach might have been impossible.
Weintraub's prose is narrative and literary, though at times it gets a bit verbose and florid. She also has a tendency to repeat some things and repeatedly emphasize others. Nonetheless the book is easy and pleasant to read, fascinating yet also very sad. At times it left the reader speechless and other times made her cry.
Cure Unknown is a must-read for anyone with Lyme disease and people interested in societal and historical views into medicine. It should also be mandatory reading for doctors in the U.S. and anywhere else where Lyme exists. Not just a story of Lyme disease, It also serves as an example of the controversies and scandals plaguing many chronic illnesses, especially chronic infections.
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