Spreen's response to this sequence of events is the Compendium of Tick-Borne Disease: A Thousand Pearls, an 856-page textbook that addresses the diagnosis, treatment and care of Lyme disease. Intended for practitioners, caregivers, and patients, this self-published tome, which sells for $120 on Amazon - with discounts available through Lyme advocacy groups - proposes a new paradigm of open-mindedness about tick-borne illnesses.
Julia Wagner, president of PA Lyme Resource Network, says the book "will change education, and help physicians quickly get their arms around a huge body of research."
"It's the book that I wished I had when my son got sick," says Spreen, 59, who has master's degrees in biochemistry and public health and board certifications in preventive and family medicine. Until her retirement in 2006, she had worked for 20 years in the pharmaceutical industry, including Wyeth, AstraZeneca, and Johnson & Johnson in research and development.
She hopes her book will "lay out some options for better care."
Nationwide, the CDC recently estimated that there are a record 300,000 Lyme cases yearly. Pennsylvania has long had one of the nation's highest rates of Lyme. Throughout our area, but especially in Chester, Montgomery and Bucks counties, episodes of Lyme disease have been common. And with a recent spate of warmer winters, fall has become prime time for Lyme disease infection.
Among Lyme patients, according to Spreen, about half will get better on a low-dose short course of a single antibiotic, never to be bothered by Lyme again. But a significant subgroup - about 30 to 40 percent - will have persistent or chronic symptoms.
Lyme disease is caused by Borrelia burgdorferi (Bb), a bacterial spirochete that is particularly adept at dodging antibiotics and evading the best efforts of some immune systems.
"Spirochetes are designed to survive even if we're hitting them with our best shot," says Spreen.
The bacteria can evade antibiotics by a variety of stratagems, including hiding behind a cell wall, burrowing into tissues and becoming dormant, encasing themselves in cysts, or forming a conglomerate called a biofilm, an organized group of organisms that are hard for antibiotics to reach.
The varying symptoms of Lyme, which can range from "brain fog" to migrating joint pain to migraines to heart and kidney problems, are caused by pathogens that form toxins and trigger changes in the immune system. Immune function can be reduced, sent into overdrive, or driven to make a mistake in identifying a cell as a pathogen and end up attacking the body itself.
"When my son was so sick, I started looking things up," says Spreen. "You tend to believe what you read, especially if it's in an established textbook. But much of the information out there is contradictory, confusing, or just plain wrong."
One common misconception, she says, is that you can't have Lyme unless a tick has been attached for 24 hours. Spreen says when attached for 72 hours, a tick will transmit infection essentially 100 percent of the time. As attachment time declines, the likelihood of transmission decreases, "but it does not go to zero."
"Many case studies show that the disease was passed after a few hours at most. Some new diseases, such as the tick-borne disease called Powassan virus, can be transmitted in 14 minutes."
Spreen also urges doctors to never "discount a diagnosis of Lyme based solely on a negative lab test." Caretakers and physicians need to keep an open mind. "You're never going to find what you're not looking for. If the Lyme test comes back negative, and that person is sick, you have to be willing to accept that the test could be wrong."
She also notes that the bull's-eye rash associated with Lyme is not as common as many doctors think. "Maybe 30 to 40 percent of people get a rash, and maybe 10 percent out of those get the bull's-eye rash. Bell's palsy, a form of facial paralysis, is much more common, as is a maroon oval that appears at the site of a tick bite."
Meghan Harrison, 20, of Ambler is one of the patients plagued by Lyme who welcomes Spreen's book. After she developed swollen knees in 4th grade, doctors were uncertain whether she had Lyme or rheumatoid arthritis. By 2005, she developed a bull's-eye rash and severe migraines, which indicated Lyme. But even with aggressive antibiotic treatment, her symptoms of headaches, severe nausea, and fatigue persisted until 10th grade, when she lost her short-term memory, developed encephalitis (inflammation of the brain), and was blind for two days.
"My mother pushed for a diagnosis of Lyme disease when the doctors had other ideas," says Meghan who is finally feeling better and plans to attend the University of Tulsa in January. "I was proud my mom cared so much to find out what was wrong with me. It was a very scary situation."
As for Spreen's son, he was treated aggressively for the better part of three years. While he's fine today, there were times when he would think he was getting better, only to report to his parents that he was so fatigued that he was having trouble crossing a room.
"My goal in writing this book was to prevent other people from going through what I went through," Spreen said. "I tried to condense information in one place so when your kid is sick, you know how to proceed."