I’d been reading Ally Hilfiger’s new autobiography Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me, preferring the Lyme parts to those devoted to fashion and her MTV “Rich Girl” series. Her symptoms were typical of chronic Lyme and simply dreadful. Hilfiger’s very supportive family watched helplessly through hospitalizations and visits to dozens of specialists. As I read, it crossed my mind that chronic Lyme disease is reminiscent of the movie “Invasion of the Body Snatchers.”
Actually, there have been four versions of the film. The 1956 original, preserved in the Library of Congress’ National Film Registry, was remade in 1978, 1993, and 2007. By now, you must have seen at least one. Time Magazine lists it among the 100 all-time best films. Having seen all four, I’d say each is excellent, scary, and unique in its own way.
The story depicts an extraterrestrial invasion of alien plant spores that grow into large pods, each capable of reproducing a duplicate replacement copy of each human. As a pod reaches full development and hatches, the alien inside takes on the physical characteristics, memories, and personalities of a sleeping person lying next to it. When the pod person awakens, the real person’s body is destroyed. The pod people are utterly emotionless, going forth into the world to locate and destroy human survivors.
Film critics have written extensively about “Body Snatchers,” looking for allegorical subtexts that included McCarthyism and its witch-hunts, brainwashing techniques, invasion by hippies (e.g., Charles Manson), and AIDS.
But reading Bite Me, the “Body Snatcher” of the 21st century is chronic Lyme disease, which can steal your life as effectively as a spore from space. In fact, in the 1978 version of the movie, when the spore attaches itself to a living being, it looks very much like a fast growing tick. Spooky!
Lyme, acute and chronic
There are two forms of Lyme disease you need to know about: the acute version and the chronic one.
Acute Lyme disease is fairly straightforward. You’re bitten by a deer tick (actually, any biting insect is capable of transmitting Lyme), which inserts a microorganism called Borrelia burgdorfi into your bloodstream. Hilfiger, bless her heart, when she first heard about Lyme thought it had something to do with Bergdorf Goodman.
A day or two after the bite, you sometimes (but not always) get the notorious bulls-eye rash, and a day or two later symptoms of the flu. With prompt diagnosis and antibiotic treatment, you’ll be fine. Other tick-borne illnesses with symptoms and treatment similar to Lyme include Anaplasmosis, Ehrlichiosis, and Babesiosis.
But when any of these become chronic, it’s another scenario altogether, very much paralleling the “Body Snatchers” movie plot. For any of several reasons, the damn thing stays with you. Perhaps the antibiotics failed, or weren’t taken for long enough. Perhaps you never got the rash but simply had a few days of flu after your camping trip and never got any treatment at all. You don’t remember or never saw any tick bite (keep in mind you can only see the front half of your body).
Now, utterly unbeknownst to you, there’s a microorganism spreading inside you, literally invading every organ: muscles, heart, brain, nerves. B. burgdorferi is in the spirochete family, spiral because it looks like a corkscrew. Its first cousin is syphilis, also notorious for spreading everywhere, and like syphilis Lyme can be sexually transmitted and passed to a developing fetus during pregnancy.
The symptoms of chronic Lyme are as variable as the organs they invade. The most common are relapsing fevers, chronic fatigue, muscle and joint aches, brain fog, and mood disorders like depression, anxiety, bipolar disorder, and OCD.
One variation of chronic Lyme is called Morgellons syndrome, in which the patient is utterly convinced that parasites are crawling beneath her skin and popping out at night, though no parasites are ever found. The current thinking behind Morgellons is that the B. burgdorferi tricks your nervous system into creating that crawly sensation beneath your skin. Hilfiger had this, as does folksinger Joni Mitchell.
In each version of “Invasion of the Body Snatchers,” the hero repeatedly tries and fails to convince the declining number of real humans that spores are taking over the human race. No one believes him and he finds himself reporting the alien invasion to the actual aliens themselves. (No further plot revelations, I promise.)
Lyme patients seek medical help
But patients suffering chronic Lyme disease find themselves faced with exactly the same problem, trying to convince their doctors that something is wrong. What they often hear in response is “Your tests are normal. There’s nothing wrong with you. Maybe you should see a psychiatrist.” Of course, in all the “Body Snatcher” versions, the psychiatrists turn out to be aliens, but I suspect you knew that all along.
Chronic Lyme is an invasion because the B. burgdorferi is really smart. Circulating in your bloodstream, the spirochete goes under the radar of your immune system. Unless you’re given antibiotics to kill it, it will live in your body indefinitely.
Diagnostic testing for Lyme is challenging. Unlike most bacteria, spirochetes like B. burgdorferi can’t be grown on a culture plate in a microbiology lab. To diagnose Lyme, you look for specific antibodies triggered by B. burgdorferi that show you’ve been infected. Unfortunately, there’s real disagreement among doctors about this form of testing. Do the antibodies found in a blood sample simply show that you once had Lyme but it’s now gone…or are they the sign of a current infection?
Here, the government’s Centers for Disease Control and Prevention (CDC) really blew it. Several years ago, they issued a blanket statement saying there was no evidence that chronic Lyme disease existed as a persistent infection. Instead, they called any symptoms that linger after the acute Lyme phase “post-Lyme disease syndrome,” stating that it wasn’t an infection and advising against antibiotic treatment.
This decision had the catastrophic consequence of putting blinders on the vast majority of US physicians, who don’t acknowledge the existence of chronic Lyme and are reluctant to test patients for it. It overlooks the tens of thousands of patients who are chronically unwell with symptoms of fever/fibromyalgia/chronic fatigue/brain fog as well as anxiety, panic attacks, depression, and OCD and may not even remember a tick bite.
It also sweeps under the rug thousands of patients who may have had Lyme, but whose antibiotic treatment failed them.
A clinical, not laboratory, diagnosis
Ultimately, chronic Lyme and all the tick-borne illnesses are clinical diagnoses rather than laboratory ones. A doctor’s best bet when it comes to diagnosing Lyme is to take a detailed history of what her patient has experienced. If faced with a laundry list of seemingly unrelated symptoms, Lyme should be placed high on the list of possible culprits and the appropriate blood tests should be ordered.
The two most commonly used tests look for antibodies created by your immune system. They are ELISA (enzyme linked immunosorbent assay) and Western Blot. However, and this is the controversy, Lyme disease can suppress your immune system to the extent that you can have Lyme without measurable antibodies. This causes someone who has all the signs and symptoms of chronic Lyme to have a false-negative test result and be denied treatment by physicians who follow the mistaken guidelines of treating the lab test and not the patient.
Doctors should ignore the CDC’s positive test result guidelines as they’re too rigid. For years, poor Hilfiger was told, “Well, you have some Lyme antibodies, but not enough to start treatment.” As a result she suffered unnecessary chronic pain, fatigue, and even mental illnesses that necessitated lengthy psychiatric hospitalization.
When it comes to treating people with chronic Lyme, just about everyone familiar with the condition agrees that antibiotic therapy alone rarely puts the disease into remission. Along with antibiotics, Hilfiger made the most progress when she added such therapies as intravenous vitamins, Chinese medicine, homeopathy, yoga, and nutritional counseling, therapies not taken seriously by mainstream conventional physicians.
At this point, you might wonder if a person can ever be completely cured of chronic Lyme disease. Sadly, the answer is “probably not.” By invading every organ and changing forms, B. burgdorferi can remain hidden away. Yet it can be kept in such a weakened state that for long stretches it remains helpless and inactive. In this it resembles herpes, which when suppressed by antiviral medications can remain inactive for decades.
Instead of hoping for full cure, it may be best to accept long-term remission and move on with your life. Hilfiger describes this acceptance in the closing chapters of her book.
So is chronic Lyme an “Invasion of the Body Snatchers?” Yes. Lyme can snatch away your life.
And the real pod people? Members of my profession whose expressionless face tells you “There’s no such thing as chronic Lyme.”
David Edelberg, MD