Barely two weeks into oral antibiotic therapy—the standard course recommended by the CDC for the supposed full recovery of Lyme disease—I couldn’t walk, eat, sleep, work, think. Life as I knew it had utterly collapsed—I had gone from vibrant to disabled in a blink. I smelled like a jar of Tiger Balm. Desperate to temper the inflammation in my joints, I gave up the whole milk in my morning cappuccino, the Josey Baker seed feast bread I used to slather with fresh Brie, Pilates, high heels (really shoes in general), and my most beloved of all treats, Champagne—those who know me well just let out sighs of true sorrow. It was time to get a second opinion…and a third…and an eighth. And not just from doctors.
As I began to ask around, one thing became clear: Lyme disease is not rare. Pretty much everyone I know knows someone who’s had Lyme. And among those who were in the know, the response to my diagnosis was universally the same—basically some variation of “Oh holy shit fuck.”
You see, while the American medical complex would have us all believe that Lyme disease is quick and simple to treat, the Lyme community knows an altogether different truth.
Of the 8 Lyme disease sufferers I personally spoke to, 7 of them were, at minimum, three or four years into their various treatments; only one felt she was rounding the corner after just one year.
They spun yarns about years of misdiagnosis that led to things like lost jobs and early retirement, broken families, and permanent brain damage; ongoing antibiotic therapies that caused insufferable Herxheimer reactions and, in one case, kidney failure; and a miscellany of bizarre medical experiments—anything to get better. Some of them told me how much they’d spent: One couple, who believes they had passed it to each other sexually, plunked down a hundred grand in about 10 years. Oh holy shit fuck.
There were $500 office visits to “Lyme literate”doctors (that’s per visit, over the course of years, and no, insurance doesn’t cover it); a 42-day IV antibiotic treatment in Monterey that “makes you want to die”; years of IV drugs administered orally or through PICC lines (peripherally inserted central catheters) to the heart; ozone therapy; hyperbaric oxygen chambers; reiki; flower essences; and the quantum physics–based Biophoton light therapy whose practitioners’ websites were clearly designed while tripping on LSD.
Not one of these people has been cured; and few seem to believe they ever really will be. Getting over Lyme disease, it turns out, may be less about a cure and more about indefinite micro-management.
Now, there comes a time in every Lyme-positive person’s life when we must pick our poison—which cocktail, of the many strange brews available, will be potent enough to obliterate the disease. According to the many experiences I’ve heard, this might just be a question of which experiment to try first, but I have noticed a theme.
Almost uniformly, Lyme patients begin with antibiotics. We are told it will take a few weeks or maybe a few months—my doctor predicted that a three-month course of antibiotics, along with a host of supplements, would do the trick. Were I among the lucky ones who got the bullseye rash and identified the infection right away, her prognosis would likely be right. But I don’t know how long I’ve had Lyme—maybe a year at the least.
But in just two weeks of taking the antibiotics, I got a taste of what all these other people have experienced over years: I got sicker. My frazzled immune system was ill-equipped to process the rapid die-off of the bacteria and the flood of toxins they leave in their wake; I had to cut my dose into quarters to slow the train that seemed to be barreling toward paralysis.
And then came The Duh Moment: If I can only take one-quarter the necessary dose, this isn’t going to take three months. It’s going to take forever. And it’s not just my body that is resisting the treatment—Lyme bacteria (called spirochetes) are intelligent little bloodsuckers; they know how to hide, evolve, resist. This was beginning to look like a war that could wage indefinitely. But while I spent all my money and efforts seeking out weapons of mass destruction, what would become of my body after an extended diet of devastating drugs?
The average patient facing an antibiotic-resistant infection can expect a medical bill of between $18,588 and $29,069 in 2009 dollars, totaling $20 billion in health care costs each year in the U.S., according to estimates from the Alliance for the Prudent Use of Antibiotics at Tufts University.
In 2000, the U.S. lost $35 billion because of premature deaths, hospital stays, and lost wages related to antibiotic-resistant infections, Tufts researchers found.
No, it was time to look at the alternatives.
Most of my new Lyme friends tell a version of the same story: After years of antibiotics left them ill and out of cash, they turned toward “alternative” therapies. In most cases, the natural—and honestly more modern—treatments yielded the best results. Now, my husband is studying to become a chiropractor. We are San Franciscans, advocates of holistic healthcare, natural and high-quality everything. Why wouldn’t we begin this journey the safe and gentle and natural way, and save the big guns for when (or if) they are needed? Everyone knows you’re supposed to progress to the hard stuff.
So, I went off antibiotics and began my hunt for the best alternative therapy. I believe I have found something extraordinary, and I only have to travel to Idaho to get it. Stay tuned.
Love in the Time of Lyme 