Lyme Disease is an epidemic. The Centers for Disease Control and Prevention (CDC) has released statistics that 30,000 new cases of Lyme were reported in the U.S. in 2012. And they believe it is underreported by a factor of 10:1, meaning 300,000 new cases last year. However, the CDC uses very restrictive criteria in their surveillance definition. When broader clinical criteria are used, it is estimated that Lyme is underreported by a factor of 40:1, which equates to 1.2 million new cases of Lyme last year alone in the U.S.
Lyme Disease is perhaps the most controversial diagnosis in today’s medical arena. Having a better understanding of this controversy and the treatment of Lyme will allow individuals suffering from this disease to seek the best treatments from the most qualified doctors.
Don't
Do
Do be aware of the common symptoms
The classic description of acute, or recent onset Lyme Disease, is that it primarily occurs in highly endemic areas, such as the northeastern seaboard; it presents with a bull's eye rash after a tick bite; and subsequently, a flu-like illness proceeds to long-term complaints, such as arthritis and nerve pain.
The reality is that Lyme Disease has been reported in all 50 states, only 3 to 26 percent of people notice a tick bite, less that 50 percent see a rash, the most common rash is a red circle or oval, and many never experience a flu-like illness. In fact, many individuals never experience symptoms of an acute infection, but rather develop long-term insidious complaints, such as fatigue, muscle and joint pains, sleep disorder, brain fog, and mood issues, such as anxiety, depression and irritability. In addition, some people describe other symptoms, including palpitations, neuropathic pains and gastrointestinal distress. Unfortunately, these people are often misdiagnosed with Chronic Fatigue Syndrome, Fibromyalgia, psychiatric conditions, including bipolar illness, or autoimmune conditions, such as multiple sclerosis, rheumatoid arthritis or lupus.Do understand the controversy
The Infectious Disease Society of Medicine (IDSA) maintains that Lyme Disease is easily diagnosed and easily treated. The IDSA guidelines claim that 10 days to 3 weeks of antibiotics effectively eliminates the infection. They believe that if people still have complaints after this time period, they must have something else.
On the flip side of this controversy is the International Lyme and Associated Disease Society (ILADS), which maintains that Lyme Disease is often not so easily diagnosed or treated. ILADS believes that Lyme is frequently complicated by co-infections (other infections transmitted by tick bites) and often requires long-term treatment.
Do consider the studies
The IDSA references four studies to claim that chronic Lyme does not actually exist, because the studies failed to show any benefit from prolonged antibiotic treatment. However, these studies suffer from serious methodological flaws, and some do in fact demonstrate the benefit of re-treatment with more prolonged courses of antibiotics.
On the other hand, a host of scientific data supports the ILADS position that chronic Lyme disease does exist. Studies on people who have been treated for acute Lyme disease demonstrate that 34 to 62 percent of individuals exhibit long-term complaints years later. There are numerous reports in the peer-reviewed literature that demonstrated evidence of persistent infection--even after aggressive antibiotic therapy. And there are thousands of people who have undergone long-term treatment and have experienced relief from their chronic, often debilitating, symptoms.
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Do not overlook the problems with testing
Part of the problem is that testing for Lyme Disease is not particularly accurate. The IDSA recommends the ELISA blood test to screen for Lyme infection. However, this test has a false negative rate of about 50 percent, which means that half of the people with Lyme will be missed. The next test they recommend--only if the ELISA test is positive--is a Western Blot, whose sensitivity depends on which lab is doing it and which doctor is interpreting the test.
The CDC has “surveillance criteria” for interpreting these tests--meaning they are using these tests to identify people whose data are used to track the epidemiologic spread of this infection. The CDC states that the surveillance criteria should not be used to diagnose Lyme in the office setting, but rather Lyme is a clinical diagnosis based on history and physical exam. The lab can confirm or support the diagnosis, but cannot rule it out. Nevertheless, doctors and insurance companies often misuse the surveillance criteria to deny treatment to people suffering from Lyme.
Do not ignore chronic complaints
Anyone with an undiagnosed chronic illness, particularly with predominantly musculoskeletal and neurological symptoms, should be properly evaluated for the possibility of Lyme Disease. If you had acute Lyme in the past, and now you have chronic unexplainable symptoms, be sure to get checked for chronic Lyme. If you have chronic symptoms that your doctors can’t explain--even if you have no recollection of a tick bite, a bulls-eye rash or a flu-like illness--get checked for Lyme and its co-infections.
Do not underestimate the need for an extended course of antibiotics
If you have acute Lyme, consider going on an extended course of antibiotics, rather than just 10 days to 3 weeks. If you still have symptoms after you finish the antibiotics, you are probably still infected.
Do not neglect to contact a Lyme literate physician
Most doctors are not conversant with the complexity of properly diagnosing and treating this infection. Contact ILADS if you are looking for a physician experienced in Lyme Disease.
Summary
Not only is Lyme Disease an epidemic--with as many as 1.2 million new cases diagnosed last year in this country--but it is a highly controversial diagnosis. Having a better grasp of the issues will allow individuals suffering from this disease to seek the best treatments from the most qualified doctors.
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