By many accounts, Lyme disease is the fastest growing vector-borne infectious disease in the United States. Further heightening widespread concern over Lyme is the fact that the disease is so commonly left undiagnosed, or is simply misdiagnosed because of its complicated clinical picture. The grim reality of Lyme is that it is many times more prevalent than is currently reported. As complicated as Lyme disease can be for medical professionals, the likelihood of patient confusion and apprehension is high.

Diagnostic Difficulties

Lyme disease can affect nearly every tissue and organ system in the body, and has been linked with over 100 different symptoms. With such varied symptoms, it can easily be mistaken for other diseases. For this reason, many physicians informally refer to Lyme disease as “the great imitator” as it is often misinterpreted to be another illness.

Consider these symptoms: fever, chills, body aches, fatigue and headaches. In its acute stage, Lyme can easily be mistaken for the common flu or other viral infections. However, when early diagnosis and treatment is not pursued, chronic symptoms develop and become even more varied. Such chronic symptoms may include loss of stamina and muscle weakness; brain fog; migrating body pains in the muscles, joints or nerves; light and sound sensitivity; sleep and digestive disturbances; low grade fevers and sweats; mood changes; and changes in vision and hearing. Patients that reach this stage are often misdiagnosed with other conditions such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis, ADHD, depression, anxiety or rheumatoid arthritis. Compounding these diagnostic difficulties is the fact that fewer than 50 percent of patients with Lyme recall a tick bite or a bull’s eye rash. Studies show that the average patient sees more than five doctors over the course of two years before being properly diagnosed.

The Trouble with Testing

One would hope this confusion over symptoms could be made clear with accurate diagnostic testing. Unfortunately, there are no completely reliable tests for Lyme. For this reason, Lyme disease requires a clinical diagnosis, one based on symptoms, medical history and available testing.

The test most people receive at their doctor’s office, known as ELISA, is notorious for false negatives – it is estimated to miss between 35-50 percent of cases. The commonly used two-tiered testing approach utilizes ELISA as a screening test, only to be followed up with a Western blot test to confirm a positive initial result. With the ELISA missing so many cases, this seems hardly acceptable.

Physicians can improve detection by performing a Western blot with the ELISA in all initial Lyme testing. However, of patients with acute Lyme, 20-30 percent remain negative on Western blot. That is, many patients do not develop the positive antibodies detected by Western blot until four to six weeks after a tick bite. If you test negative soon after an exposure, the test should be redone one month later. The opposite is also true. Antibody tests such as ELISA and Western blot can sometimes lose their sensitivity when patients have carried an untreated Lyme infection over the long term.

Perhaps the most confounding of all issues surrounding Lyme testing is that most Western blot tests fail to take full advantage of the technology. Before the Lyme vaccine was discontinued many years ago, the Centers for Disease Control and Prevention modified the guidelines for Lyme Western blot. At issue was the fact that the test was too sensitive, registering positive results when a patient had been previously vaccinated. For this reason, what are known as bands 31 and 34 were removed from the Western blot. Despite the fact that the Lyme vaccine is no longer on the market and that these two bands are particularly effective at detecting Lyme, most Western blot tests still do not include bands 31 and 34. When using a Western blot, you should ask for it to be performed by a lab that reads all of the bands related to Borrelia burgdorferi (the bacterium that causes Lyme).

There are a variety of other testing methods available for Lyme which can help shed light on diagnosis when standard tests are inconclusive. Some of these additional tests include PCR (polymerase chain reaction) analysis, culture tests by Advanced Laboratory Services, blood smears through Fry Lab, and T cell response testing via the iSpot Lyme Test from Pharmasan labs. Keep in mind that no lab test for Lyme is perfect; each of these present their own strengths and weaknesses. In the end, the most important thing to remember is that Lyme disease is a clinical diagnosis. It should be diagnosed on signs and symptoms alone, with laboratory tests only being used to support the diagnosis. No single lab test can definitively rule in or rule out Lyme disease.

Co-infections and Associated Ailments

It is also important to test for co-infections. Co-infections refer to the myriad other infectious organisms that can be transmitted with a tick bite. Common co-infections such as Babesia, Bartonella and Ehrlichia are not detected by Lyme tests, nor are they treated with the same antibiotics or natural therapies. If left untreated, these co-infections can be a primary reason why a patient is not improving on Lyme treatment.

As with Lyme, however, testing for co-infections can be unreliable, and a patient’s symptom picture is the most important means for diagnosing these tick-borne diseases. Many of the symptoms associated with these infections overlap with Lyme symptoms, but thankfully there are some distinguishing features of each. Though the following may be helpful in recognizing the most common co-infections, consult a doctor with the appropriate expertise in diagnosis and treatment.

Bartonella: Depression/anxiety; insomnia; feeling of nervous energy running through the body; sore soles of the feet; digestive upset; nodules under the skin; swollen lymph nodes; purple stretch marks; numbness; tingling; and twitching.

Babesia: Cyclical symptoms of night sweats; fever; chills; fatigue; global headaches; rib pain; shortness of breath; and dry cough.

Ehrlichia: Rapid onset of illness; high fever; intense, sharp headache behind the eye; sore muscles; low white blood cells; and elevated liver enzymes.

In addition to co-infections, patients with chronic Lyme may suffer from other opportunistic infections resulting from a weakened immune system. Such complications include yeast or candida overgrowth, parasites, or reactivation of latent viruses in the body, such as herpes and Epstein Barr. All of these infectious layers must be addressed in order for the chronically ill patient to recover.

The Road to Recovery

Unfortunately, patients suffering from Lyme disease face a cloudy diagnostic outlook. Thankfully, physicians with experience in this field should be able to help patients navigate these diagnostic pitfalls. Once the proper diagnosis has been made, effective treatment and recovery requires a multi-tiered approach. This will usually include addressing all layers of infection as well as the inflammation and toxin overload that often accompany Lyme disease. Successful treatment typically includes tailored herbal, homeopathic and nutritional regimens – these are designed to be used in conjunction with appropriate conventional therapies.

Deb Bossio, ND, is a licensed naturopathic physician practicing in Ridgefield. She can be reached at 203-431-4443, DrDebBossio.com and [email protected].