Nine Doctors Missed My Diagnosis: Here's How I Finally Found Relief
At the end of July 2002, my husband and two boys spent a relaxing week on the beaches of Martha's Vineyard, an island off Boston. A few days after returning home, my husband and I came down with what felt like an intense summer flu. We had debilitating head and neck pain, fever and chills, body aches, and crushing fatigue. I had a circular pinprick rash around each knee, and I was so weak, I had to crawl on my hands and knees to get up to the second-floor bedroom. Both of us were in our early 40s, fit, and athletic, but we both agreed that this was the sickest we'd ever felt, so the next day we went to see a primary care physician together.
This physician looked us over and decided we had a viral infection that would go away in a few days. She ran a standard blood panel just to be sure. But four days later, things got worse. We went to see her again, and she told us our blood work was normal.
"Could we have Lyme disease?" I asked, knowing that ticks were a problem on Martha's Vineyard. (Neither of us pulled out a tick.) She said she'd consult with the chief of infectious diseases and get back to us. He agreed to see us but didn't think we had it.
This specialist couldn't fit us into his busy schedule until December 5, more than five months after our beach vacation. And while we waited, our symptoms got worse. We started experiencing brain fog and gut pain with alternating diarrhea and constipation. Before this, we rarely got sick. Once every few years, we'd get a flu that would slow us down for a day or two. But this was very different.
We felt completely ignored and disregarded.
The infectious disease expert blew into the examination room and spent less than 15 minutes with us. He dismissed my Lyme theory, saying he thought we might have a parasite or parvovirus. He agreed to treat us for a presumed parasite with 20 days of iodoquinol (medication used to treat infections caused by protozoa, tiny one-celled animals).
After 48 hours of taking the drug, we began to feel better. We were able to function during the busy holiday season. But a week after the medication ran out, the old symptoms returned with a vengeance. Over the phone, the expert agreed to give us 20 days of iodoquinol and doxycycline (an antibiotic). But two weeks after that course ran out, the old symptoms returned, along with some new ones.
In January, six months after onset, the infectious disease expert began a new round of testing and sent us to a gastrointestinal specialist, who thought we had an infectious disease. The infectious disease expert ignored this advice. In tears, I begged him for more antibiotics, and he gave us 14 more days of doxycycline. He began treating me like I was hysterical, telling me he thought we were suffering from a "psychosomatic couples thing," implying that I was a lonely wife inventing symptoms to get more attention from a busy husband. He offered to refer me to a psychotherapist.
I flatly refused and began shopping for a new doctor.
At this point, we were crippled 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.
Simple things were hard for both of us. I couldn't remember what the red, yellow, and green colors meant on traffic lights. My husband would get lost in our neighborhood and lose his sense of self and place. I would forget to turn off my car when I went into a store. I couldn't fill out a check or read bedtime stories to my children. Every time we ate, we'd experience searing pain in our intestines. My husband continued to drag himself to work because we needed his medical insurance. I had to shut down my business, and we had to take out a second mortgage to make ends meet. We were desperate, and not daring to say it aloud, we were worried that we would soon be too sick to take care of our boys.
Even after a positive test, we had trouble getting treatment.
It took a month and a half to secure an appointment with an infectious disease expert at a prestigious academic medical center. He seemed compassionate and was a good listener. He tested us for a dozen or so diseases. A week later, all the tests came back negative except for one—my Lyme disease test.
I was overjoyed. After eight months of suffering, visiting specialists, and never-ending negative tests, we finally had a possible diagnosis.
But what happened next was jaw-dropping. The expert told me that the Lyme antibody test that he used was notoriously unreliable, and he was going to ignore the result. His understudy added that Lyme disease was rare, and for both of us to get it would be "like winning the lottery." (Then why did he order the test? And how could he ignore the fact that both of us got sick at the same time after visiting an island rife with Lyme disease?) I insisted that he run the test again, and it came back positive a second time. But instead of starting me on antibiotics, he handed me a box of tissues.
"I'm sorry, but we don't have the tools to treat people like you," he said, and he fired us as patients.
I sobbed uncontrollably on the drive home. Then, back at my home office, I pulled myself together. Finally, we had a probable diagnosis, so I began searching the internet. Thankfully, an online Lyme disease advocate came to the rescue and directed us to an experienced tick-borne disease physician in our town. This classically trained, holistic physician spent over an hour with each of us, taking down our medical histories and conducting extensive physical and neurological exams. She ran a battery of blood tests to see if we had other tick-borne diseases. Over the course of many weeks, we'd both tested positive multiple times for Lyme disease and another tick-borne disease, babesiosis, a serious, sometimes fatal red-blood-cell parasite.
Our new physician gave us hope that we would be able to get well, sparing us the unvarnished reality of what lay before us: It took six months to be able to handle a normal workload. It would take another five years of on-again, off-again treatments before we were free of all symptoms.
How we finally got the treatment we needed.
There are two radically different medical guidelines for treating Lyme disease. The first is sponsored by the Infectious Diseases Society of America (IDSA), primarily written by academic researchers. Their experts say that most Lyme disease cases can be cured with four to six weeks of doxycycline. If symptoms return after that, you are out of luck. No more antibiotics for you.
The other guidelines are sponsored by the International Lyme and International Lyme and Associated Diseases Society (ILADS) written mostly by community-based physicians who spend most of their time assessing and treating patients on the front lines of the tick-borne disease epidemic. They follow the clinical science and the laboratory science, which results in a less rigid road map. After diagnosis, they use combinations of antibiotics to target Lyme and the co-infections. They treat patients until they feel better, and along the way, they prescribe probiotic supplements to minimize the impact of long-term antibiotics. No one loves taking antibiotics, but for us, it was a necessary evil. It came down to this question: Who is going to win this battle, the bacteria or us?
Bottom line, it took us 10 doctors, a year, and $60,000 to get an accurate diagnosis. The IDSA treatment guidelines didn't work for us, and the ILADS guidelines did.
What I want others to know about Lyme disease.
Early treatment of tick-borne diseases is important. The longer you wait, the harder it will be to get better. And it's important to figure out if you have other concurrent tick infections early on because some of them require different treatments than those used for Lyme disease. The Rocky Mountain spotted fever bacterium kills three out of 100 people, and it can put you in a coma in 14 days. The deadly Powassan virus can be transmitted by a tick bite in as little as 15 minutes. Babesia can be fatal in people with injured or missing spleens. The Lyme disease bacterium, Borrelia burgdorferi, is an immune-system disrupter that can induce long-term inflammation in the brain, the heart, and other organs.
Don't waste time with physicians who hold strong beliefs that Lyme disease is rare or overdiagnosed. (Lyme disease has been found around the United States, and there are almost 500,000 new cases a year, according to the CDC1.) If you suspect Lyme, find a tick-borne disease specialist experienced in diagnosis and treatment, or at least an open-minded physician who will work within the medical insurance system. To look into financial aid for diagnosis and treatment, visit this website. Know that the screening antibody test for Lyme is about as accurate as a coin flip. Lyme disease diagnosis should be based on clinical symptoms first, then confirmed with testing later.
Document your medical history along the way, to make it easier for your physician to reach a diagnosis. If you pull off an embedded tick, send it off to a lab for testing. It's faster and cheaper than the human blood testing, which doesn't work reliably until a month after the bite. (Tick testing can also be inaccurate, depending on lab quality.) If you see a rash at the bite site, take a picture of it.
Educate yourself. The documentary Under Our Skin provides a good overview of common symptoms, disease politics, and the stories from patients who've gotten well. There is a great series of online physician education courses from Invisible International that you can watch for free here.
And finally, stay hopeful. Finding an experienced, collaborative physician who understands the complexities of mixed tick-borne infections is key to regaining your good health.
Kris Newby is an award-winning science writer and the senior producer of the Lyme disease documentary UNDER OUR SKIN, which premiered at the Tribeca Film Festival and was a 2010 Oscar semifinalist. Her book BITTEN won three international book awards for journalism and narrative nonfiction. She is currently Communications Director at Invisible International, a nonprofit working to alleviate the suffering cause by invisible illness.