For those reasons, Dr. Stricker and other physicians affiliated with the International Lyme and Associated Diseases Society (ILADS), don’t rely on patented commercial tests to diagnose Lyme. They use different tests, ask different questions about their patients’ symptoms and may prescribe different treatment protocols.
Unfortunately for patients, the ILADS approach to diagnosing and treating Lyme disease is considered controversial in the medical world. In some states, doctors can get in trouble with medical boards for treating Lyme disease outside of guidelines issued by the Infectious Diseases Society of America (IDSA).
The IDSA is a private organization made up of physicians and researchers. Its guidelines, endorsed by the CDC, define Lyme disease very narrowly. Without a bull’s-eye rash and/or a positive screening test, patients will not be diagnosed with Lyme—even if there are other indications that they have it. If a Lyme patient meets that rigid diagnostic standard, in most cases the guidelines limit treatment to two-to-four weeks of antibiotics, even if the patient is still sick.
This leaves patients in a terrible bind. Like Mattix, they may get sicker and sicker with seriously debilitating symptoms. They may keep going to doctors who can neither determine what is wrong nor help them get better.
A survey by LymeDisease.org of over 5,000 Lyme patients found that most of them saw at least seven doctors after onset of symptoms before receiving a Lyme diagnosis. A third saw 10 or more.
Complicating matters, people who have been sick a long time may have more than one thing wrong with them. For instance, ticks don’t just carry Lyme disease.
A single bite can transmit several infections at once, including babesia, bartonella,
anaplasmosis and ehrlichia. (In another LymeDisease.org survey of Lyme patients, more than half of respondents had at least one laboratory-confirmed co-infection. A third of them had two or more.) In addition, a patient may have thyroid problems, for instance, or may have been exposed to toxic chemicals. All of these factors can muddy the picture considerably.
In his groundbreaking book, Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, Dr. Richard Horowitz says, “Instead of looking for one answer, I believe we should be looking for many. The majority of my Lyme patients, as well as others suffering from persistent chronic illness, generally do not have one sole cause for their symptoms. They often have an overlapping set of medical problems.”
Horowitz, an internist from Hyde Park, New York, has treated Lyme disease for more than 20 years. In his book, he offers a new way of looking at Lyme and chronic illness, what he calls multiple systemic infectious disease syndrome, or MSIDS. He discusses the interaction of such factors as different tick-borne diseases, endocrine abnormalities, liver dysfunction and allergies.
People who have suffered for years with Lyme-related health problems pay close attention to Horowitz and others who offer useful guidance when their own doctors have offered none.
Many patients also participate in online Lyme forums and support groups, as well as posting frequently on Facebook and Twitter.
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A single bite can transmit several infections at once.