My family’s harrowing journey to get a diagnosis after we were bitten by ticks — and what it says about our health system.
I opened a file drawer and pulled out 12.4 pounds of medical records organized in two large binders. Tucked inside the top binder’s front pocket was a grainy photo of my husband and me sitting on a misty beach on a small island near Martha’s Vineyard in Massachusetts. My husband, slim and fit, smiled at the camera, blissfully ignorant of what was about to happen. Our two sons, 10 and 12 years old, were just out of the camera’s range, playing in the surf. There was a date stamp burned into the lower right corner of the photo that said July 22, 2002.
This was our last day of perfect health.
What followed was years of misery that started after my husband and I were bitten by unseen ticks. My tick had secretly buried itself at the back of my head, creating a chronically weeping lesion, a tick bite granuloma, that a year later would have to be surgically removed. My husband never figured out where he was bitten. Eventually, we both tested positive for Lyme disease bacteria and malaria-like Babesia parasites. While most tick-borne diseases can be cured with an early dose of inexpensive antimicrobial drugs, the delays in our treatment resulted in a chronic condition, and we joined the estimated 1 million to 3 million people in the US who suffer from persistent Lyme disease symptoms.
I was an engineer trained to solve complex problems and a science writer by profession, so as soon as I was diagnosed, I began reading everything I could about Lyme disease. It quickly became clear that there was a puzzling gap between how the medical establishment viewed the disease and how it was experienced by tick-bitten patients.
The academic researchers who wrote the clinical guidelines for Lyme disease said it was easy to diagnose, treat, and cure. Lyme patients insisted that the tests and symptom lists were inaccurate and that the recommended treatment — a short course of antibiotics — wasn’t curing the disease in all cases. In the face of all these contradictions, I started searching for answers, and along the way I produced a documentary and a book that explored these issues.
Bottom line: The tick-borne disease problem is much more serious and widespread than most people realize, with reported cases of Lyme disease tripling in the United States since the late 1990s. Based on more than a decade of research, I believe our medical system is structurally designed to marginalize and misdiagnose tick-borne disease patients.
The slide into a mysterious illness
A week after my husband and I returned to California from Martha’s Vineyard, we both experienced horrible flu-like symptoms. I was so weak, I had to crawl up to my second-floor bedroom. We went together to see the doctor on call at our community clinic. I told her about our Martha’s Vineyard vacation and suggested that we might have Lyme disease. She dismissed the idea and told us we probably had a virus and that we should come back if symptoms got worse. The next week, we returned to her office sicker than the week before. She still thought it was a virus, but she gave us a referral to see an infectious diseases specialist.
We couldn’t get an appointment with the specialist until December 5 — more than five months after leaving Martha’s Vineyard. During our 10-minute appointment, I told him about the Lyme problem on the island, but he wouldn’t test for it for reasons he didn’t explain. Instead, he tested us for parvovirus and gave us three weeks of a drug called iodoquinol to treat for possible intestinal parasites.
This drug gave us the first relief from symptoms since our vacation, but once the course ended, our symptoms returned more serious than ever, with waxing and waning combinations of exhaustion, brain fog, constipation, explosive diarrhea, head/neck/muscle aches, traveling nerve pain, twitches, blurry vision, light and sound sensitivity, loss of time/place/self, and the inability to read, write, or carry out the cognitive tasks required for daily living.
In January, I called the infectious diseases doctor in tears, begging for more antibiotics, but he refused, saying, “We can’t treat you based on a positive response to drugs.” Then he said he thought we were suffering from a “psychosomatic couples thing.”
I decided to look for another doctor. It was May — 10 months after our trip — before we could get an appointment with two infectious diseases doctors at a nearby academic medical center. They ordered an array of tests, including one for Lyme disease. All the tests came back negative except for my Lyme test. My husband’s Lyme test came back negative. The doctor said my test was a false positive and he was going to ignore it. The younger of the two doctors told us that the odds of us both getting Lyme disease would be like winning the lottery. Then the more senior doctor fired us as patients, saying that he didn’t have the tools to treat people like us. He recommended that we seek counseling for depression.
At this point, I was so incapacitated that I had to shut down my tech marketing business. My husband, a Silicon Valley engineer, went to work sick every day because we needed his employer health insurance. We realized that we might never recover. And in the middle of the night, our inflamed brains churned on one thought, never spoken aloud: What will happen to our boys?
With the first solid lead in our case in 10 months, a positive Lyme test, we found a reputable doctor who specialized in tick-borne diseases through a Lyme support group, and we started down the road to recovery.
The obstacles to getting diagnosed for Lyme disease
It took 10 doctors, a year, and $60,000 to finally diagnose our two serious tick-borne diseases. By then our microbial invaders were deeply entrenched in our brains and tissues. It took another six years of on-and-off antimicrobial treatments to return to health. Because of lost wages and medical expenses not covered by insurance, we burned through our savings and our sons’ college funds. We had to take out a home equity loan to make ends meet.
Yet I consider us among the lucky Lyme patients. Unlike many of the hundreds of patients I encountered during the filming and promotion of the Under Our Skin documentary, we were able to return to work. We’ve been doing well for years. My recent interviews show that even now, years after our ordeal and with Lyme cases increasing, patients still face obstacles in getting diagnosed.
Based on my book and film research, I believe that the root cause of the Lyme misdiagnosis problem is the persistent mythology that the disease is overdiagnosed and that the testing is accurate. The chief proponents of this point of view recently published “Lyme Disease in 2018,” a Viewpoint essay in the prestigious Journal of the American Medical Association. Throughout the essay, the authors minimize the impact of the Lyme problem, and in the abstract, they say “there has not been a statistically significant increase in the number of reported cases of Lyme disease in the United States during the most recent 4 years (2013-2016) for which data are available.”
This is in stark contrast to the April 2019 statement on Lyme disease from the Centers for Disease Control and Prevention, which said Lyme is spreading rapidly into new geographical areas and that “Tickborne diseases increasingly threaten the health of people in the United States.” While most Lyme cases are concentrated in the northeastern and north central states, there are reported cases of Lyme in all 50 states today. In 2017, there were almost 60,000 cases of tick-borne diseases reported to the CDC.
The scientists at the CDC who study the spread of diseases now say, “Reported cases capture only a fraction of the overall number of people with tickborne illnesses.” The CDC is “unclear” on the reasons behind the rapid spread of ticks and related diseases, though they cite change in land use and climate patterns as important factors.
As we found out the hard way, ticks spread many other diseases, many of them deadly, and the symptoms of mixed tick-borne diseases — Rocky Mountain spotted fever, babesiosis, and Lyme disease, to name a few — are not well documented in the medical literature. Spotted fever can send people into a coma within 14 days. Babesiosis, a red blood cell infection, can be fatal for people with damaged or missing spleens. If Lyme disease is not treated promptly, it can lead to life-threatening cardiac manifestations and chronic neurological problems. In hindsight, it’s easy to see how our whack-a-mole mix of symptoms, especially the brain inflammation and pain, unmeasurable and invisible to physicians, made us seem like hypochondriacs.
Few physicians realize that the recommended two-tiered Lyme disease testing protocol is outdated and inaccurate. One 2007 study in the British Medical Journal found that the protocol missed “88 of every 200 patients with Lyme disease.” Another UK meta-analysis of Lyme test kits, published in the International Journal of General Medicine on November 18, 2016, concluded: “An important clinical implication of our conclusion that current Lyme testing lacks sensitivity is that many genuine cases of LB [Lyme borreliosis] may be underdiagnosed.”
Rather than measuring for the physical presence of the Lyme microbe, the commonly used tests rely on the measurement of a body’s antibody response to the microbe. So a Lyme-infected person might test negative in the first month of infection if their immune system hasn’t produced enough antibodies to be measured. Or, in my husband’s case, if the antibodies at the time of testing were tied up fighting Babesia, the Lyme antibody test might read negative. After his germ load was lowered by a short course of antibiotics, he tested antibody-positive for both of his tick-borne diseases.
A better approach to testing would be to screen blood for specific DNA markers of several tick-borne diseases in one run, but it will take time for these tests to move from the research labs to clinical use.
What to do if you’re bitten by a tick
People ask me what they should do to avoid what my husband and I went through. I tell them that prevention should always be a top priority: pulling socks up over pant legs, spraying repellent on clothing, and doing daily tick checks. Still, sometimes ticks, with skills honed over 120 million years of evolution, slip past those defenses.
Ticks are sewers of infection that can transmit multiple species of disease-carrying organisms into your bloodstream in a matter of hours (though your chances of getting Lyme disease are low if a tick is attached to you for 36 hours or less, according to the CDC). Once a tick taps into a blood vessel, it releases chemicals that suppress the immune system for a week or more, giving the germs a dangerous head start. So if you suspect you may have acquired a tick-borne disease, your number one goal should be to start treatment as soon as possible.
If you capture the tick that bit you, send it to a lab that will analyze it for its microbial hitchhikers. The Bay Area Lyme Foundation will test ticks for free using advanced techniques at the University of Northern Arizona. It’s not fast, but by sending in your tick, you are participating in a citizen science project to track the spread of ticks and associated diseases. Ask your doctor if you can start taking antibiotics while you wait for results. If you have a rash, take a picture of it next to a ruler so you can see if it expands over time, a sign that you have Lyme disease. Know that the testing on the tick is not foolproof — both positive and negative results can be misleading — so keep an eye out for symptoms no matter what the results are.
Find a doctor experienced in treating tick-borne diseases. If you had a brain tumor, you’d probably seek out a doctor with lots of experience treating that specific type of cancer. The best way to find physicians trained in treating complex tick-borne diseases is to contact the International Lyme and Associated Diseases Society, a nonprofit organization that can send you a list of practitioners in your area. Don’t waste valuable treatment time trying to convince an inexperienced physician that you’re really sick. Find an expert who knows which drugs are most effective for each of the tick co-infections and in what order to treat them.
Treatment for Lyme is too often delayed — but hope is on the horizon
As I was writing this story, I showed the 2002 beach photo to my husband and asked him what he thought of the couple in it, us, 17 years ago.
“Naive,” he said.
“If you could turn back time, would you do it?” I asked.
Now that I’m on the other side of my tick-borne illnesses, I spend a lot of time thinking about how to help others avoid the ordeal that my family went through. Here I offer up my personal story as a burnt offering, a cautionary tale, in the hopes that others might avoid the mistakes we made.
The reasons behind the misinformation associated with tick-borne diseases are multifaceted and complex. One of the primary reasons Lyme disease has been ignored by the pharmaceutical industry, a force for good in other diseases, is that there’s no money in it — the cure is an early dose of off-patent, cheap antibiotics. While there’s a profit potential with a Lyme vaccine (one is in development in France), it offers no protection against other serious tick-borne diseases, so it may never be widely adopted. With no accurate diagnostics on the market, Lyme patients are often misdiagnosed with fibromyalgia, chronic fatigue, multiple sclerosis, or irritable bowel syndrome. So for pharma companies, the real money is in treating the daily symptoms of chronic Lyme disease — pain, depression, and inflammation — with lucrative blockbuster drugs.
There is no medical insurance reimbursement code for chronic Lyme disease. Medical insurance companies are under tremendous pressure to reduce costs, and labeling chronic Lyme as a “syndrome” rather than a legitimate disease gives them grounds to deny the expensive ongoing care costs of these very sick patients.
A close examination of the backstory of Lyme disease shows other factors that have corrupted the foundational science of Lyme disease. In Under Our Skin, I explain how researchers’ financial interests in vaccines and test kits may have negatively influenced the original definition and diagnostic recommendations for Lyme disease. In my book Bitten, I explore evidence that suggests the initial Lyme outbreak was caused by a bioweapons release of an organism that was left out of scientific publications. This book, a call to action for researchers, asks the question, “Could an unacknowledged human-engineered microbe be contributing to the confusing set of symptoms that tick-bit patients are experiencing today?”
This leaves us with a medical system that is structurally designed to delay treatment and do harm to tick-borne disease patients.
But there is hope on the horizon.
This year, the CDC announced that it will improve its passive system for tracking tick-borne diseases by funding a more coordinated national surveillance program. And there are a few companies and universities working on more accurate, faster diagnostics for all the tick-borne diseases. But these structural fixes won’t be done anytime soon.
In the meantime, the best advice I have to offer is to take charge of your health care. Do your research before you go to the clinic, and find a physician who will be open-minded about the real risks of tick-borne diseases. Realize that you might have to fight to be tested and to be treated with protocols that will restore your health.
Kris Newby is an award-winning science writer at Stanford University and the senior producer of the Lyme disease documentary Under Our Skin. Her new book is Bitten: The Secret History of Lyme Disease and Biological Weapons.