Chronic Lyme Disease - Is it real?

               As an infectious disease doctor, I am constantly being asked about Lyme disease by my patients, acquaintances, and other doctors.  Their interest is well founded.  One only needs to Google “Lyme disease” to see the thousands of divergent opinions and theories, both by the medical establishment and the public.   Even my colleagues are confused.  What constitutes a true diagnosis of Lyme disease?  Can a person be infected by Lyme disease despite having a negative test?  Is chronic Lyme disease real?  I field these questions on a daily basis despite living in North Carolina where Lyme is a rarity according to the Center for Disease Control (CDC) and the N.C. State Health Department.  I am sympathetic to my colleagues in the Northeast where Lyme disease is endemic.  I, for one, will not be volunteering to practice medicine in Lyme, Connecticut.  Despite my relative insulation from the heat of battle,  I am fearful that with global warming and the associated intrusion of new vector borne pathogens into traditionally cooler and less bug infested areas, the Lyme referrals will increase, even here in the N.C. Mountains.  What is a clinician to do?

                First, let me relate what is known about Lyme disease and generally accepted by most clinicians - both western trained and alternative.  Lyme disease is the most common reportable vector born disease in the United States.  Lyme disease is transmitted by certain ixodid ticks and is caused by the spirochete Borrelia burdorferi.  Lyme is also present in other countries where other Borrelia species may be involved.  According to the CDC, over 30,000 cases of Lyme are reported in the U.S. each year, although the true number of cases likely exceeds 300,000 due to underreporting.  Classic early Lyme disease presents as a bull’s-eye rash that appears 1-2 weeks after a tick bite.  For some, the rash is all they get, but others may report fatigue, headache, joint pain, and occasionally, fever.  Early Lyme is treated with antibiotics, usually doxycycline.   Serologic testing at this point is not recommended, as an immune response has often not yet kicked in, leading to falsely negative tests.  Up to this point, there is generally agreement, but with all else Lyme, the consensus breaks down.

                The problem is that despite a clear CDC definition for Lyme disease - a reported tick bite and classic skin lesion for early Lyme disease, and well defined serologic criteria for secondary Lyme disease- there is ambiguity regarding whether people commonly progress to long term symptoms related to Lyme disease despite treatment, an entity referred to as chronic Lyme disease.  Some argue that a person can develop chronic Lyme disease despite never having a distinct tick bite, rash, or serologic evidence of infection.  An expert panel organized by the Infectious Disease Society of America (IDSA), the main association for infectious disease doctors in the U.S., agrees a percentage (upwards of 20%) of persons with confirmed Lyme infection may continue to have persistent complaints lasting beyond 6 months from the original diagnosis despite appropriate treatment, but asserts that the complaints and numbers affected are not significantly greater than the general population as a whole, and are thus not clearly attributable to Lyme disease.  Additionally, the panel has concluded that even if there is such an entity as chronic Lyme disease, which it says there is not, there is no evidence supporting treatment with a longer course of antibiotics or any of the treatments proposed to date.  Here is where the IDSA is at odds with other Lyme advocacy groups and Lyme societies.   The International Lyme and Associated Diseases Society (ILADS) has reviewed the same studies and formed entirely different conclusions.

                What is a clinician to do?  The patients are confused, the doctors are confused, and I am confused.  Something must be going on, but what?  Patients complain of “brain fog,” poor memory, numbness, pain, headaches, and irritability.  It sounds like a bad hangover.  While all this suffering is concerning, it does create enormous opportunity.  Into this knowledge gap, many have entered.  In the Northeast, Lyme Clinics abound.  It really feels like the wild west of medicine.  There are endless remedies proposed and no lack of willing customers.  Cures for chronic Lyme disease are offered by dedicated western trained clinicians, opportunistic western trained clinicians, homeopaths, herbalists, and alternative practitioners of all stripes.  

Stay tuned.  Next post -  Chronic Lyme Disease - Alternative medicine paradise  (The next post will be in 2 weeks – I am gone to Nicaragua for a medical mission in the interim)