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The Truth About Chronic (Late-Stage) Lyme Disease

Updated 9-18-21   
First published 02/29/2012. The CDC estimates that about 30,000 Americans have Lyme disease (a tick-borne disease, particularly common in areas with big deer populations), but the numbers may be much higher. Chronic (or late-stage) Lyme disease is a disease for which patients have trouble getting a timely diagnosis and adequate treatment. The disease can affect the skin, joints, nervous system, and other organ systems--and some patients present initially with psychiatric problems (full-blown manic episodes, for example). Dissension in the medical community about the nature of the disease and controversy about available (or unavailable) treatments make this a condition for which a strong patient-advocate community has developed. Here are some places to start learning about this complex health problem and the many patients who have trouble finding effective medical help. The resources listed here are essential reading/listening for anyone who suspects the presence of this disease in a family member.
Ross Douthat On Lyme, Chronic Pain, Faith (listen to this audio interview, Andrew Sullivan, The Weekly Dish, 9-17-21) Sullivan interviews Douthat about his memoir about his experience with Lyme disease. Do listen to his account (starting at about minute 20) of how long it took to recognize what was happening, starting with the little bump he felt on his neck and including agonizing pain and explosive feeling chest pain (that kept getting diagnosed as phantom heart attacks). Listen to the treatments he went through ("you have to try things, because there is a huge zone between pure quakery and seven double-blind trials" and in that zone some things work).  When you have a very serious infection and it starts getting treated, the wide range of symptoms may get worse before they get better. His book (pub date: late October 2021): The Deep Places: A Memoir of Illness and Discovery  "Douthat manages a really remarkable thing here: to weave together his story of a body’s pain, a mind’s vacillations, and a spirit’s struggles with an account of how the medical establishment deals with, or simply refuses to deal with, conditions it does not understand. That Douthat can weave all this into a unity and even make the book a kind of page-turner—that’s something special.”—Alan Jacobs, author of How to Think and Breaking Bread with the Dead.
Losing Our Memory and Finding Each Other (Michelle Marie Wallace, Narratively, The Weekender, 8-30-15) "I’d been sick with Lyme disease for eight years, though undiagnosed, and struggling to hide the slow spread of neurological symptoms. I had the sense that time was running out, but, as no doctors had ever found anything wrong with me..." "A battle with Lyme Disease decimated my memory right as Alzheimer’s did the same to my grandfather—but surrendering our thoughts brought us closer together than ever."
How Ticks Dig In With a Mouth Full of Hooks (Deep Look, excellent PBS/KQED video, 4 minutes)
A big dispute behind a tiny tick bite: What to call the lingering effects of Lyme disease? (Janice Lynch Schuster, Washington Post, 9-15-14) "For most people with Lyme, a 30-day course of antibiotics is enough to cure the infection. But according to Gerry Wormser, an infectious-disease expert who helped develop the Lyme guidelines of the Infectious Disease Society of America, not everyone responds to this treatment. And for these people, a lifetime of health problems can ensue." A balanced look at a controversy about a disease and its treatment, enough to make you worry about ivory-tower Lyme deniers on one side and Lyme-treating charlatans on the other.
Lyme disease and climate change: Research roundup (David Trilling, Research Roundup, Shorenstein Center on Media, Politics, and Public Policy, Harvard Kennedy School, 7-25-17) A few decades ago, at least in North America, Lyme disease affected only small parts of New England and the upper Midwest. But the tiny ticks that carry the debilitating illness have spread rapidly in recent years, establishing themselves in twice as many American counties and pushing 46 kilometers deeper into Canada every year. Summarizes findings of several scientific papers. Worth reading, but not light reading.
Vector-Borne Diseases Key Finding 3: Changing Mosquito-Borne Disease Dynamics. Vector-borne pathogens are expected to emerge or reemerge due to the interactions of climate factors with many other drivers, such as changing land-use patterns [Likely, High Confidence]. The impacts to human disease, however, will be limited by the adaptive capacity of human populations, such as vector control practices or personal protective measures [Likely, High Confidence].
MyLymeData (a patient-powered research project for chronic Lyme disease). Add your Lyme data to MyLymeData to help find a cure for Lyme disease.
SLyme Disease: How a speck changed my life forever . Novelist Amy Tan's piece on her experience with late-stage neuroborreliosis also appears in her book The Opposite of Fate
 Kris Kristofferson: An Outlaw at 80 (Neil Strauss, Rolling Stone, 6-6-16). He was losing his memory and was thought to have Alzheimer's when he began treatment for Lyme disease and his health story took a right turn. See also Lyme Disease: Inside America’s Mysterious Epidemic (Winona Dimeo-Ediger, Rolling Stone, 6-20-17) Celebrities from Kathleen Hanna to Kris Kristofferson have revealed their diagnoses. The history of Lyme disease in the United States is as eerie as it is complicated. The CDC counts “the need for improved diagnostic tests” among its goals for addressing the growing Lyme disease problem, but researchers on the ground say the government has been loath to support its promises with resources. 
Can Bee Stings Treat Lyme Disease? (Katy Vine, Texas Monthly, Dec. 2019) Treatments for chronic Lyme disease are controversial and expensive. As a last resort, some patients are pursuing this unproven and painful alternative.
Diagnosing and Treating Lyme Disease. (Diane Rehm radio show, NPR-WAMU-FM, 2-29-12--listen online). Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which have said there's no evidence long-term antibiotics can cure "chronic Lyme" disease, or even that such a condition exists. Read the comments, after listening to the experts explain what is known, unknown, and disputed: Dr Paul Auwaerter (Johns Hopkins University School of Medicine and clinical director, division of infectious diseases, Johns Hopkins Hospital), who contends there is no such condition and resists the treatments that many patients say have provided relief after years of suffering); Dr. Samuel Shor (internist, private practice and associate clinical professor at George Washington University), who argues that many patients with symptoms of chronic fatigue syndrome, who had tested negative (in currently inadequate tests) for Lyme disease, responded to treatment for it ; Dr. Brian Fallon (professor of clinical psychiatry. director, Lyme and Tick-Borne Diseases Research Center. and director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine, Columbia University); and Stephen Barthold (professor,department of pathology, microbiology and immunology, Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis), who reports on what researchers know from the study of animals with the disease.

      Dr. Samuel Shor explains the surge in illness in terms of a "perfect storm" arising from many factors: a growing tick population in endemic areas, increasing tick exposure,and the fact that ticks are tiny and often hard to see, that people often do not realize they are infected or present with no abnormalities, that the majority of patients may not get the typical rash and other presenting symptoms, that available testing is insensitive, that medical guidelines are flawed, that managed care pushes doctors to see fewer patients for less time, and that insurance is reluctant to pay for extended care.

Controversy over Chronic Lyme Disease.(Listen to Diane Rehm radio show, WAMU, 4-26-09, with Dr. Samuel Shor, Pamela Weintraub, and Philip Baker, ALDF. Chronic Lyme Disease is one of the most controversial issues in medicine today. Diane and her guests discuss the battle over diagnosis, treatment, and whether Chronic Lyme Disease even exists.)
Lyme Disease Association (all-volunteer national nonprofit)
International Lyme And Associated Diseases Society (ILADS)
The Lyme Disease Foundation
American Lyme Disease Foundation
National Library of Medicine on Lyme Disease
National Institute of Allergy and Infectious Diseases on Lyme Disease
CDC, Division of Vector-Borne Infectious Diseases (links to other stories, videos, explanations)
Patient information: What to do after a tick bite to prevent Lyme disease (UpToDate)
Under Our Skin (video trailer for excellent documentary about doctors who refuse to treat or even acknowledge chronic Lyme disease)
Lyme Disease: The Great Imitator (Pamela Weintraub, Psychology Today, on a form of disease that can masquerade as psychiatric problems)
When the Doctor Gets Sick, the Journey Is Double-Edged (Pamela Weintraub, Psychology Today, part 1 of three-part story about many patients' struggle to get a diagnosis, with neurological Lyme disease). Click here for part ii, for part iii , and Shadowland of the Mind (Neurological Lyme Disease, Part One), an excerpt from Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub
Chronic Lyme disease: A dubious diagnosis (Patricia Callahan and Trine Tsouderos, Chicago Tribune 12-8-10). A report from the other side.
Tickborne Diseases of the United States (CDC)
The Integrative Treatment of Lyme Disease (by Steven J. Bock, MD, reprinted from the International Journal of Integrative Medicine, May/June 1999). Dr. Bock is well-known for treating people whose disease other doctors don't recognize.
An Often-Overlooked Health Epidemic: My Opinion Piece on AOL News (Connie Bennett, opinion piece on AOL.com)
Iceman mummy may hold earliest evidence of Lyme disease (CBS News 2-29-12)

More excellent resources on late-stage Lyme disease


• A member of my local book group talked about a book she'd just read called Lab 257: The Disturbing Story of the Government's Secret Germ Laboratory by Michael C. Carroll, which in one chapter talks about Lyme disease being one of several animal-borne diseases being studied (the tick as carrier) as part of germ warfare. Carroll contends, she says, that ticks bearing the disease escaped to Connecticut where an epidemic of Lyme disease started in the U.S. National Geographic ran a story about Lyme disease that touches on that possibility lightly, if not scornfully (Jesse Ventura believes it): What Is Lyme Disease? New Findings Deepen the Mystery (Jarret Liotta, National Geographic, 3-1-14).
• FDA OKs First Tests to Detect Tickborne Parasite in Whole Blood and Plasma (Megan Brooks, Medscape Medical News, 3-7-18) "The first screening tests for antibodies to Babesia microti in human plasma samples and B microti DNA in human whole blood samples have been approved by the US Food and Drug Administration (FDA).Both tests are "intended to be used as donor screening tests on samples from individual human donors, including volunteer donors of whole blood and blood components, as well as living organ and tissue donors," the FDA noted in a news release.

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