By Terry Schaefer
Who knew that an insect the size of a poppy seed could change your life? I do. Now, I do. Like so many others in suburban New Jersey, Lyme has become a personal story for me. In 2012, my strong, healthy, accomplished 40-year-old son started experiencing an alarming array of seemingly unrelated symptoms. Ringing in his ears. Migraine-like headaches that never quite turned into a migraine. Muscle pain in the neck and shoulders. Exhaustion. Even confusion. He started what we know now to be a common quest to find someone, anyone, who could explain what was happening.
Doctor after doctor, specialist after specialist gave him every conceivable test modern medicine has in it’s arsenal: MRI’s, CT scans, blood tests, even a spinal tap gone wrong, which made him even sicker. One New York physician walked into the examining room where my hopeful son sat and immediately said, “I don’t know why you are here. I can’t help you.” A renowned neurologist hospitalized him for five days, peppered him with intense tests and drugs, and eventually concluded that he did not know what was wrong—then never returned another phone call or email.
Early on, my son asked his internist if he might have Lyme. The doctor doubted it, but agreed to give him the standard western blot Lyme test. It came back negative, as is often the case. Nine months passed. Time is precious when you have tick-borne disease. The longer it goes undiagnosed, the more difficult it can be to treat. He got sicker, but looked well. No one at his stressful job understood how horrible he felt. Some days he thought he was dying. Even his strong support network of friends and family had no real idea how alone and scared he felt. Unless you experience this yourself, you can’t.
Finally, nearly a year later, he was diagnosed with Lyme disease. Since it took so long to get the diagnosis, we don’t know how long he has had the disease. One tiny little tick did this to my son. Its bite left no rash or telltale “bull’s-eye” ring, which can be the case.
INSIDE THE NUMBERS
In August last year, the Centers for Disease Control released preliminary estimates that the number of Americans diagnosed with Lyme disease each year is around 300,000, stating that “This new estimate suggests that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the yearly reported number.” In 2012, the CDC reported a total of 3,616 confirmed and probable cases in New Jersey—making our state one of the 13 most-affected. And while it is difficult to quantify, up to 60 percent or more of us may be walking around with Lyme and not even know it. The symptoms can be minor, or imitate other illnesses.
To complicate matters, this is not just about Lyme. That tiny tick can carry other bacteria or parasites, causing insidious co-infections, which are difficult to identify, diagnose and treat as well. Dr. Andrea Gaito is a rheumatologist who practices in Basking Ridge and is an expert on tick-borne disease. She fears that patients who have been bitten by a tick and are experiencing symptoms are not being tested or treated for Lyme disease or its co-infections, both of which are on the rise.
The challenges are many. Tick-borne illnesses can manifest differently in each patient and can cause a sobering range of symptoms. Some people are not so sick and get well quickly. Others are terribly ill. For many, the road back to wellness can be long and require both persistence and patience—tough to muster when you are scared and sick. And treatment has to be tailored to each patient, considering variables like age, symptoms, and medical history. Dr. Gaito insists there can be no cookie-cutter approach to treating Lyme patients.
IS INFORMATION POWER?
How can Doctors possibly stay abreast of new research about these vexing diseases, given too few standardized diagnostic tools and no silver-bullet pharmaceutical remedy? One way is to share their experience and expertise. Fourteen years ago, Dr. Gaito and a growing number of doctors who have become experts on tick-borne illness formed a professional organization to do just that. The International Lyme and Associated Diseases Society (ILADS) has become a primary resource for patients and professionals.
Dr. Daniel Cameron of Mount Kisco, New York—in the heart of Lyme country—has been studying tick-borne disease since 1987, and is president of ILADS. He says that because patients have such a range of symptoms, they start out by going to specialists not knowing the symptoms are connected. However, many doctors in and out of the infectious disease community do not acknowledge Lyme as a chronic condition. Both the CDC and the Infectious Disease Society of America (IDSA) call it “post-treatment Lyme disease syndrome.” The belief is that calling Lyme a “chronic” disease it is not based on scientific fact.
Dr. Paul Auwaerter is Director of the Johns Hopkins Fisher Center for Environmental Infectious Disease in Baltimore, and is a former board member of IDSA. When asked about the term “chronic Lyme disease,” he explains that he does not use it because he does not unders tand it. He says it encompasses many symptoms that are not very distinct—and which could potentially be a consequence of Lyme disease—but, in his experience, there are alternative diagnoses. He points out that “the so-called Lyme specialists will say ‘I know what’s causing your problem: Lyme disease’…and there may or may not be good evidence for that.”
Dr. Cameron and his colleagues disagree. “Doctors are reluctant to apply the evidence until a top doctor gives the go-ahead”, he maintains. So even if there is growing evidence—and there are patients who reflect that evidence—until leaders in the medical community agree, the debate about tick-borne illnesses and and how to treat them is likely to continue. Indeed, as I dug deeper into the existing research, I found that many doctors are fearful that, if they acknowledge and treat chronic Lyme—and possibly give an incorrect diagnosis—they could lose their license to practice medicine.
Another challenge is that many insurance companies are as unwilling as some doctors to accept chronic Lyme as a real condition that could require long-term care. So in addition to having to figure out who to believe and how to manage their own treatment, many patients have to battle with insurers and foot considerable out-of-pocket medical bills, which is often a crushing burden to bear.
Dr. Gaito adds that doctors do not believe there is such a thing as chronic Lyme—until they get it.
A central controversy over tick-borne diseases is how to treat them. Doctors trained in traditional western medicine prescribe antibiotics. Others partner antibiotics with alterative treatments, such as herbs and supplements to boost patients’ compromised immune systems. Dr. Kristine Gedroic, an Integrative Doctor based in Morristown, used to treat her patients with 75% antibiotics, 25% naturopathy and alternative treatments. Now it is the other way around. She believes that overuse of antibiotics is just as detrimental as underuse, adding that doctors must find that middle ground. Dr. Gedroic hopes that “treating these challenging illnesses and infections will change the paradigm of how we see infectious disease, so those of us who can see it in a new way are successful treating it.”
So how does a patient like my son know which doctors to believe and which treatment routes to take? It can be overwhelming, daunting, lonely, even depressing. Dr. Gedroic believes there is a truth inside of all of us—doctor and patient alike. “You know what is true when you see it, and you see your patient and you have a hypothesis and you get better,” she says. “The real challenge is finding the humility to analyze the failures.”
Dr. Gedroic relies on the willingness of her patients to take responsibility for the “terrain” we call our bodies. We all live with bacteria in us, so the real question is, why are the people who are sick sick, and why are people who are not sick, not sick? Bacteria can go from friend to foe. “The person that takes their health for granted cannot get away with Lyme because it is too opportunistic, it will take advantage,” she says. “You have to learn how to get the body back in charge again”
While they may not treat patients battling disease from that tiny tick the same way, doctors on both sides of the so-called Lyme wars are working hard to care for their patients. Patients have to decide whom they trust most for their own diagnosis and treatment. While they have their differences within the ILADS community, doctors Cameron, Gaito, and Gedroic agree on a lot. They treat each patient as a whole person, on a case-by-case basis, and encourage them to take charge of themselves and their illness, encouraging them to gather as much responsible medical information as possible. They urge patients to develop strong support systems, and consider counseling, as being sick can be emotionally isolating and difficult. Dr. Cameron tells his patients to try to work if they can, because isolation may only make them feel worse. And no matter how sick you are, they agree, have hope. You can get better.
As for my son, he is still working towards that. And as is often the case, he has come to know his disease so well he can recognize it in others. He recently successfully diagnosed my husband, even though their symptoms are very different.
So yes, this is a personal story. My biggest hope, besides my son and husband’s getting well, is that Dr. Gedroic is right: that this little tick and all its power will encourage some fundamental changes in how both doctors and patients navigate this country’s medical terrain.