The Stealth Bug From Hell: Chronic Lyme Disease

Last week we discussed the stealthy nature of Lyme and other infectious organisms, like chickenpox. To start, this week I’ll say by now everyone should be familiar with the basics of avoiding acute Lyme disease. When you’re in the woods or tall grass wear long pants tucked into socks and a long-sleeved shirt, spray DEET over exposed areas and clothing, do frequent tick checks, and call your doc or go to an urgent care center if you get a suspicious looking rash, especially one that accompanies a summertime flu.

For more, here are the CDC recommendations.

But that’s prevention for acute Lyme. Having chronic Lyme is different. The organism, Borrelia burgdorferi (B. burgdorferi), may have entered you years ago, dozing peacefully and leaving you alone until it’s jolted awake when your immune system comes under stress. The same applies to other tick-borne illnesses, the shingles virus, and the tuberculosis bacillus, a few of the many stealth organisms normally held in check by your immune system.

Sick, by prize-winning American-Iranian novelist Porochista Khakpour, is one of the numerous  Lyme journey books published recently. As a professional writer, she’s more articulate than most in telling the story of her personal experience with Lyme. It gets to be pretty grim reading as Khakpour describes her symptoms, especially those that affect her thinking and sleep. Her loneliness and isolation are painfully described, as are her treks to healthcare providers of all stripes. Nobody seems to understand what’s going on.

There are many moments when Khakpour feels certain she’s going to die and no one will know what to put on her death certificate.

And yet, as I read through Sick I was surprised by how little Khakpour understood herself. Her tale might be subtitled “How Living Like Keith Richards Can Activate Your Own Stealth Organisms.”

Your mom was right about sleeping, eating, and balance

She’s very open about her lifestyle choices. From early adolescence Khakpour, who rarely weighed more than 100 pounds, chain smoked cigarettes, drank lots of alcohol, and took recreational drugs almost obsessively. She had a full ride to Sarah Lawrence College, which she described as an upscale drug-culture institution for the children of the uber rich.

Whenever she could, she dipped into the Manhattan art scene, rife with hard drugs like cocaine and heroin, and chose serial relationships with self-destructive, drugged-up boyfriends. She rarely ate and she slept poorly, though she actually became a yoga instructor in addition to writing and selling her first novel.

Last week I mentioned that the TB patients I’d worked with as a resident had reactivated their old (stealth) TB via chronic alcoholism and malnourishment. What’s surprising about Khakpour is that it doesn’t seem to occur to her that some of her choices have ultimately come back to haunt her.

Although she’s too good a writer to fall back on the “why me?” cliché, she doesn’t catch the possibility of “why not me?”

Beyond this background, the years she suffers trying to understand what’s happening to her body and mind are a painful read. Quite literally dozens of doctors around the world are stymied. Only one doctor actually mentions the possibility of Lyme during one of her hospitalizations, but her blood sample gets lost by the lab, she forgets to ask about it, and the doctor forgets about her.

Feeling herself deteriorating, she attempts to set up support systems that frequently fail her. Ultimately, she spends all her money on generally useless health care until someone says, “This is Lyme, period” and she gets the appropriate confirmatory tests.

A chronic Lyme education

Along the way, she learns some interesting facts about Lyme. There are far more women than men with chronic Lyme. In fact, women, when faced with chronic disease and especially an undiagnosable one, quickly experience the subtle (or not-so-subtle) sexism that still pervades health care. “It’s probably just your hormones,” “It’s all in your head,” “You just want attention…or drugs…or disability benefits.”

Khakpour offers a timely and discouraging piece of advice: if you happen to be a brown woman and you’re going to an emergency room, you’ll get much more compassionate and attentive care if you’re accompanied by a tall white man. For her numerous visits to the ER, she maintained a list of white men she could call on to accompany her.

Let me comment here on the well-documented gender differences in diagnosing chronic Lyme. It fits nicely into the role of the stress-buffering brain chemical serotonin that I’ve written about in my books The Triple Whammy Cure and Healing Fibromyalgia. Although the female brain is better equipped for intuition and emotion, its lower levels of serotonin (which also exists in the gut) renders its owner more susceptible to acute or chronic stress than a man’s.

When a guy has a terrible day at the office, he’ll stop into a bar, have a beer, watch the Cubs, and get into a profound conversation about the best route to Schaumburg. By the time he gets home, he’s forgotten about the bad day. A woman having the same experience will go home with a migraine from hell and throw up.

This gender difference is also apparent with the other low-serotonin disorders–fibromyalgia, chronic fatigue, depression, anxiety, irritable bowel, and migraine. With each of these, as well as with chronic Lyme, stress to some degree overwhelms the serotonin stress buffer and starts a cascade of symptoms. Effective treatment usually includes taking something to raise serotonin, like an SSRI antidepressant or the herb St. John’s wort.

Wasted years

Khakpour’s body is super stressed by her lifestyle choices, some of which may have been her own misguided attempts at self medication. As a young woman, before her Lyme awakens, she gets a temporary reprieve from her anxiety and depression when she starts taking a serotonin-raising antidepressant. But in the process of dealing with her anxiety, she gets hooked on benzodiazepines.

All her unchecked stress combined with the self-destructive behavior finally pulls the rug from under her immune system and her Lyme, likely acquired when she was about six years old, stirs awake.

What follows for Khakpour are years of hell, the same agonizing scenario relayed by Lyme sufferers Ally Hilfiger, Kelly Osbourne, and a host of others. These are wasted years, filled with illness and humiliation.

Relapses

You might reasonably ask, “Does everyone’s chronic Lyme start after some form of increased stress in their lives?” The answer is pretty much yes, as is the case with most fibromyalgia and chronic fatigue patients.

Likewise, relapses, the bane of anyone with a chronic illness, are usually triggered if not by stress then by a protracted period of often inadvertent self neglect. (“I really wasn’t taking care of myself and I felt my fibro pain coming back.”)

Yet despite relapses, Hilfiger, Osbourne, and Khakpour are all on a (guarded) road to recovery. Like the fibro-flares of fibromyalgia and the unpredictable crashes of chronic fatigue syndrome, chronic Lyme patients are familiar with relapses, the chilling moment when you realize your Lyme symptoms are returning.

Relapses are real, and because of them physicians who work with Lyme patients are reluctant to ever use the word “cure” in the sense you can be cured of, say, strep throat or appendicitis. Most likely, if you have chronic Lyme you’ll always be susceptible to Lyme relapses. The key is learning to hold the relapses at bay.

Your goal with chronic Lyme is remission, achieved by reducing the Borrelia population in your body and inactivating what’s left behind. Although some doctors think you need massive doses of intravenous antibiotics to accomplish this, such treatment is unnecessary for most people with chronic Lyme.

You’re not going to eliminate every last Borrelia in your body. They’re too stealthy for that. But just as you can inactivate the shingles virus and send it back to its dormant chickenpox state or reduce pulmonary tuberculosis to a scar on your lung and a positive TB skin test, you can put your chronic Lyme into remission.

How this is done is really interesting. We’ll cover it next week.

Be well,
David Edelberg, MD