In the complex world of Lyme, many people believe there is at least one certainty. If nothing else, you can rely on that well-known sign that you have been bitten by a Lyme tick—the telltale bull’s-eye rash, the red ring that develops around the bite.
Or can you?
The bull’s-eye rash is reliable proof that you have been bitten by a Lyme tick, but some individuals with Lyme develop a different kind of rash, or none at all. The CDC states that 70 to 80 percent of people with Lyme disease get the bull’s-eye rash.1 However, other experts in the field feel this number is grossly exaggerated and that the rash may only be seen in up to 50 percent of people who get Lyme disease.2 Joint swelling, another sign of Lyme disease, is not a reliable gauge either, since it is found in only about 30 percent of people.3 The fact is, people in early-stage Lyme experience a wide variety of symptoms.
Lyme may present itself as a flu-like illness. You may get fever, chills, sweats, and muscle aches. Or you may feel fatigue. Other than the bull’s-eye rash, there is no single, unmistakable sign that you have Lyme bacteria in your system at this early stage.
JOHN’S STORY When John came to my clinic, he told me that he had had chronic arthritis and significant back pain for more than twenty years. He also complained of chronic fatigue, muscle pain, and head- aches. John had been to more than a dozen doctors and special- ists and had been diagnosed with chronic fatigue syndrome and fibromyalgia. To help relieve his symptoms, his doctors pre- scribed multiple painkillers and muscle relaxants. But while these drugs helped somewhat to control his pain, their many side ef- fects interfered with his daily life and work. When I began work- ing with John, his blood tests for autoimmune diseases like rheumatoid arthritis and lupus were all negative. The only tests that repeatedly came back positive were the ones for inflamma- tory markers—these were always elevated.
I asked John if he had ever been tested for Lyme disease. He told me that because he had been living in Florida, where there is no known Lyme disease, his doctors told him he didn’t need to test for Lyme. But his doctors neglected to ask him where he grew up, which happened to be Connecticut—a state with one of the highest rates of infection from Lyme disease!
I recommended he get a Lyme screen test through his local reference laboratory, A widely available test, and the one most doctors offer first, this test looks for specific Lyme antibodies. In John’s case, the results were negative. However, as I well knew from my work as a microbiologist in a clinical laboratory (before I became a physician), this test often produces false negatives. A false negative means that the person has the disorder but the test reports that they don’t. Knowing that is a common result with this particular test, I decided to run a more sensitive and specific antibody test called a Lyme Western blot. The guideline from the CDC is to first run the screening test. I often don’t run the screening test because it is so faulty, but since it’s the CDC pro- tocol, many doctors offer this test. Later, I will discuss this issue in greater depth.
When I ran the more accurate Western blot, John’s results came back positive. My suspicions had been confirmed: John was very likely exposed to a tick bite and infected with Lyme disease when he was living in Connecticut and had never been properly diagnosed. Once I knew what was causing his symptoms, he started the same treatment you will follow in this book. Within six weeks, almost all of his symptoms had resolved. It has now been almost two years since his diagnosis. I am happy to report that John is living symptom-free.
The Great Imitator John’s case clearly shows why Lyme disease has become so problematic: many who are infected are never diagnosed. Many others are diag- nosed incorrectly. In fact, I refer to Lyme disease as “the Great Imita- tor,” since it can look like many other illnesses. This often tempts health-care providers to look for other diseases, when the problem is actually Lyme. I am always saddened to hear about a person who has complained for years of Lyme-like symptoms but has gone untested because their doctor felt it was unnecessary. This oversight is bad enough if the patient lives in an area where Lyme disease is uncommon. But when it happens where Lyme disease is epidemic, it’s alarming.
To make matters worse, doctors receive little education on Lyme disease in medical school. It is only when physicians get into clinical practice and start seeing Lyme in all of its various manifestations that they begin to understand it. This is why, when you consult a doctor, you must be your own best advocate. If your doctor or health-care provider resists testing you, then find someone who will. Every practi- tioner who treats Lyme disease knows that the sooner you start treat- ment, the better your chances of recovery. (See the Resources section, page 325, for a guide to practitioners.)
Copyright © 2018 by Darin Ingels. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
