Diagnosing and Treating Lyme Disease

No bigger than a quarter-inch and as small as a poppy seed, the deer tick that transmits Lyme Disease has created big medical problems for many people and a large controversy within the medical community over the best ways to test for and treat the disease.

According to Dr. Gary Kaplan, of The Kaplan Center for Integrative Medicine, “Many individuals who are accurately diagnosed and treated for Lyme Disease, recover quickly and completely. Some of those who are correctly diagnosed and treated, however, fail to recover fully, and there are also those who, for a variety of reasons, remain undiagnosed, untreated, and sick.

About Lyme Disease

Lyme disease is a bacterial illness that in humans can cause a bulls-eye rash or a simple red lesion at the site of the bite, fatigue, joint pain and swelling, headaches, and fever and chills. More broadly, Lyme is one of a whole spectrum of tick-related infections that can result in illness, pain, and neurologic disorders. By some estimates, at least 25 percent of the deer-tick population is infected with Lyme. An infected tick transmits the illness after latching onto the host – either human or animal. Within days or weeks, the disease manifests itself as some combination of the above symptoms.

Lyme disease isn’t the only tick-borne threat, either. Ticks can carry multiple bacteria and parasites, including babesiosis, ehrlichiosis, anaplasmosis, Bartonella and Rocky Mountain Spotted Fever (also called Spotted Fever Rickettsiosis). At least 20 percent of the ticks that carry Lyme also carry another infectious agent. Says Dr. Kaplan, “It’s not uncommon to see patients with multiple tick-borne infections, but you won’t find them if you don’t look.”

In the Commonwealth of Virginia during 2011, medical authorities reported over 1,000 new cases of Lyme disease, 231 cases of Rocky Mountain Spotted Fever and a total of 131 cases of ehrlichiosis and anaplasmosis. The symptoms of these other illnesses may be similar to those of Lyme (headaches, joint pain, and fatigue) or unique, such as cyclical sweats and complaints of pain in the soles of the feet.

A Difficult Diagnosis

The only way you can contract Lyme disease is through a tick bite. If you have proof of a tick bite and several of the symptoms, there is a very good likelihood you have Lyme disease. More often than not, however, you won’t be able to confirm a tick bite. These creatures are tiny and prefer latching onto hard-to-see areas of the body such as your armpits, groin, or scalp, so it’s likely you won’t notice its presence. By the time you start feeling sick, the tick could be long gone.

Another factor that can make it difficult to obtain an accurate diagnosis is the similarity of Lyme Disease’s symptoms (fever, chills, fatigue, headache, and joint aches) with those of many other, non-tick borne illnesses (such as flu and other bacterial infections). Without a confirmed tick bite and the presence of the classic bulls-eye rash (which occurs in only a percentage of Lyme infections and may go unnoticed), the only sure way to diagnose Lyme disease is through blood tests.

Dr. Kaplan says, “Before deciding whether to run diagnostic testing, it’s necessary to both evaluate a patient’s physical symptoms and take a comprehensive history to assess their personal exposure risk. For example, if an individual is experiencing some suspicious symptoms, often hikes or horseback rides, and owns a pet that spends time outdoors, I’m likely to order blood testing for Lyme.”

If left undiagnosed and untreated, Lyme disease and other tick-borne illnesses can have detrimental effects on the body’s musculoskeletal and nervous systems, causing symptoms such as chronic joint pain, headaches, fatigue, and depression that may be misdiagnosed as fibromyalgia, chronic fatigue syndrome or psychiatric illness.

Says Dr. Kaplan, “There’s no danger in performing a diagnostic blood test, but it does take a few minutes of a patient’s time and there is a minor financial cost – either to you or to your health insurance company. Personally, I’d rather my patients be safe than sorry, so if it looks like Lyme might be the culprit, I go ahead and order the testing.”

As noted above, an individual who has been diagnosed with Lyme disease also could be infected with other tick-borne diseases. These other infectious agents, like ehrlichiosis and anaplasmosis, can produce similar symptoms to those of Lyme disease, but respond to completely different antibiotics and require different lengths of treatment.

According to Dr. Kaplan, another complicating factor is that laboratory tests several of these other tick-borne diseases aren’t perfectly reliable, so some doctors are hesitant about ordering additional testing to detect these infectious agents. Different labs have varying levels of sensitivity for detecting Lyme and other tick-borne diseases, and some testing can miss some cases of infection. To accurately interpret testing results, therefore, your physician needs to understand the sensitivity and specificity – or, in other words, the limitations — of the lab testing he or she is ordering.

“And finally,” says Dr. Kaplan, “there is evidence indicating that chronic cases of Lyme disease (when symptoms persist after taking the typical short-term dose of antibiotics) contribute to a sustained inflammatory condition throughout the body that interferes with the healthy functioning of the nervous system. Known as “Central Sensitization Syndrome,” CSS has been implicated in several chronic illnesses and pain conditions, including fibromyalgia, chronic fatigue syndrome, and depression.”

The Treatment Controversy

Scientists agree that Lyme disease appears in at least two forms in the human body – as a spirochete and in “oval” form. These two forms are sensitive to different antibiotics and to different lengths of treatment. Furthermore, there is a debate about whether Lyme also exists in a biofilm form in the body. The theory is that this third form is especially resistant to antibiotic treatment, which may account for why Lyme disease becomes a chronic illness in some people.

In any event, there is extensive discussion within the medical community, about what constitutes the best protocol for treating patients suffering from Lyme disease. The root of the controversy is that physicians have a variety of opinions about how Lyme disease is expressed in the body.

One view is that, with proper antibiotic treatment, most people fully recover from Lyme disease, and only in a small subset of the population does Lyme present as a long-term intracellular illness.

The other view is that Lyme disease is intracellular, and as such, it never completely leaves the body. The implication of this perspective is that even if a patient stops experiencing symptoms, his or her body still harbors the infection. Consequently, symptoms may reappear over time, either chronically or intermittently.

When, in spite of undergoing one round of antibiotics, a patient’s symptoms persist (Chronic Lyme Disease), some doctors will prescribe a long-term course of antibiotics of up to two or three years. Dr. Kaplan explains that there are risks associated with this approach, however, as high doses of strong antibiotics can cause imbalances in the digestive tract that can lead to diarrhea, yeast overgrowth, and nutritional deficiencies. There is also the theoretical risk of creating antibiotic-resistant bacteria.

Says Dr. Kaplan, “We can’t just give a patient antibiotics and walk away. We must closely monitor each patient, watch for and be ready to treat any side effects that do appear. In fact, in some cases, the long-term use of antibiotics can cause more problems than the Lyme disease itself.” Dr. Kaplan recommends probiotic nutritional supplementation during the antibiotic regimen. He also prescribes some Chinese and Western herbal remedies to alleviate some of the side effects of taking high doses of antibiotics over an extended period of time.

To the extent that Central Sensitization Syndrome is triggered in some Lyme disease patients, the treatment protocol needs to be adjusted accordingly by adding therapies to help reduce inflammation and calm the nervous system, such as taking medicinal herbs, adopting an anti-inflammatory diet, undergoing acupuncture, and engaging in stress-reducing activities like mild exercise and meditation.

Be Your Own Healthcare Advocate

The best medicine is prevention; so before recreating outdoors, cover your body in light-colored clothing, use an insect repellant on yourself and your pet, and take the time to check yourself and your pet for ticks before going back inside.

Dr. Kaplan advises, “If you do notice Lyme-like symptoms, talk to your doctor immediately and ask to be tested.

“Remember: Every individual is unique in their genetic makeup, medical history, and environmental exposures, and each of these factors can affect how Lyme disease manifests itself in your body.

If some of your symptoms persist, even after you have been treated — don’t give up! Be your own advocate, keep asking questions and seeking answers until you find the right treatment options for you.”

Additional resources:

If you experience some symptoms of Lyme and have a high risk of exposure to ticks because you spend time outdoors in the warmer months or own outdoor pets, a helpful first step is the Horowtiz Lyme Questionnaire. Developed by Lyme expert, Dr. Richard Horowitz, this test should not replace medical advice from your physician but can be a useful tool to determine the likelihood of Lyme or other tick-borne illnesses. The only way to confirm or rule out a Lyme diagnosis is with a blood test.

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