Over the past several months I’ve been reading memoirs of patients with chronic Lyme disease. When the victim is a celebrity (Ally Hilfiger, Kelly Osbourne), she’ll land a contract and a book tour with a mainstream publisher. When the victim just lives down the block but believes she has something important to say, she’ll self-publish through companies like lulu.com. Currently, there are more than 1,000 titles on amazon containing the word “Lyme” and more than 100 on lulu.
The titles of the first two lulu books set the trend: Surviving Lyme by Janice Fairbairn and Lyme Recovery by Darcy J. Williamson.
To me, most interesting of the several I’ve explored is Sick by Porochista Khakpour, a very bright American-Iranian novelist (born in Tehran, raised in LA, educated at Sarah Lawrence) who, despite devastating experiences both with chronic Lyme and the US healthcare system, does survive both and lives to tell the tale.
What Khakpour and virtually all the memoir-type books have in common is the hazardous relationship between a severely symptomatic patient with an undiagnosed (or un-diagnosable) illness and the brick wall of the medical profession.
Early days of stealth illnesses
As a physician, I first encountered this decades ago with chronic fatigue syndrome and fibromyalgia. Despite thorough diagnostic testing, no specific illness ever turned up. A variety of viruses, parasites, and bacteria would appear on a Hercule Poirot-inspired list of suspects, but specific treatment was nonexistent.
Worse, the patient was often dismissed as a hypochondriac.
To this day, there’s no gold-standard diagnostic test for chronic fatigue syndrome. True, some patients have evidence of Epstein Barr, but others don’t. Same with candida, parasites, herpes, and the list goes on.
Some truly healthy people have positive blood tests for Epstein Barr. Does a doctor treat it? Not if she’s following the “First, do no harm” rule.
Chronic Lyme disease is the chronic fatigue syndrome of our time
No doctor in the US would argue about the existence of acute Lyme. You’re in a Lyme disease area, it’s summer, you’re walking through tall grass DEET-less, and a few days later you have the flu. Only half of Lyme victims even remember a tick bite and only half have the bull’s eye rash. Sensible doctors (like myself, of course) phone in a course of antibiotics and that usually clears up the acute Lyme.
But when acute Lyme disease is not treated, the causative organism, Borrelia burgdorferi (B. burgdorferi), enters and spreads throughout your body, where it may or may not cause trouble. Listen up, because the “may not” is very important.
B. burgdorferi joins a rather lengthy list of infections that, once acquired, very likely live inside you for the remainder of your incarnation. To put it bluntly, they’ll finally be destroyed when you’re cremated. If you prefer burial, the infection may survive forever. Viruses have been found in mummies worldwide.
These fellow-traveler infections are called stealth organisms, and the moniker is an apt one. You’re probably familiar with many of these already, but let’s review. To me, the prototype stealth infection is the chickenpox virus, also called varicella zoster virus (VZV) or herpesvirus type 3.
Other stealth infections include mycoplasma, Epstein-Barr, tuberculosis (if you’ve had a positive result on a skin test, there’s dormant TB inside you), Bartonella, Babesia, cytomegalovirus, hepatitis, and many others.
If you pay special heed to chickenpox (yes, lowly chickenpox) you’ll understand more about chronic Lyme. And, sadly enough, you’ll probably know more than most US physicians, who dismiss chronic Lyme as merely the latest fad diagnosis.
The stealth ability of chickenpox
You get chickenpox as a kid. Mom applies some calamine lotion to dry the scabs. Your low-grade fever inactivates the virus and after a few days you get well. But then the virus, undeterred, migrates into part of a nerve and becomes dormant (nods off to sleep).
It can remain dormant for decades, but often when something stressful happens in your life it pops awake. (“Did you call me?”) Maybe it’s a bad flu or notification of an IRS audit, but something occurs that reactivates the virus. It then travels down its nerve and comes out your skin as–you guessed it–shingles. A friend of mine had a rotten tree branch fall on his shoulder and this unpleasantness stirred the virus awake. His subsequent shingles appeared precisely along the line of his injury.
If you get shingles you’ll call your doctor, she’ll prescribe an antiviral, and the virus will return to dormancy.
Other infections can also awaken after a big sleep. When I was a resident, I worked at a Nashville VA hospital on the TB ward. The patients were painfully similar: malnourished, down-and-out alcoholics whose dreadful physical condition allowed their long-dormant TB bacillus to awaken, usually starting in their lungs and spreading elsewhere. They’d probably first acquired TB as children and it had lain dormant until their profound self-neglect allowed reactivation.
Syphilis (a bacterial first cousin of Lyme, by the way) may stay dormant for decades, though its presence can be shown by a positive result on an RPR test.
Chronic Lyme is a stealth organism
Chronic Lyme disease and other tick-borne illnesses are all classic stealth organisms. Lyme-carrying ticks are everywhere. Since deer are major tick carriers, you’d think every deer hunter in the US would have Lyme. At this moment, there are two chipmunks gamboling on my front steps. Since they’re basically cute little Lyme carriers, should I bite the bullet and blow them away?
Given the jillions of ticks out there and the thousands of square miles of exposed human skin, it’s certainly possible that (a) you’ve already been bitten by an infected tick (the average age for acquiring Lyme is 11), but (b) your immune system protected you from getting a full-blown case of acute Lyme. However, you now (c) harbor B. burgdorferi in a dormant state in your body, which (d) will likely never develop into the misery of chronic Lyme disease, unless…
To be continued next week.
In the interim, be well,
David Edelberg, MD