Lyme and the CDC: A tangled web

A 50 year old male came into my office in March 2007 to inquire about Lyme disease. He had been referred by anther patient. He had previously been diagnosed with fibromyalgia, depression and other ailments. He is an outdoors man and recalls many tick bites over a period of many years. His illness became pronounced in 1994, but in retrospect had been ongoing for at least 20 years.

He complained of arthritis, sleep problems, severe cognitive impairments, weakness, a loss of coordination, a loss of balance and diffuse muscle pains and restless leg syndrome.

His previous physician had treated him with the antidepressants Wellbutrin and Elavil. His examination showed evidence of sensory peripheral neuropathy. Initial screening blood work was normal. His "Western Blot" for Lyme with a "mill" lab showed a single IgG band in the 58 position.

A brain MRI showed white matter disease. Based on my experience with many similar patients, I felt he had chronic Lyme disease and presumptive neuroborreliosis. The medical literature is replete with information regarding many well documented cases of seronegative Lyme disease. Today's IDSA/CDC crowd makes that claim that not only is seronegative Lyme virtually non-existent, but seropositivity is narrowly defined by the two step ELIZA/Western Blot test. History has been re-written. The CDC has repeatedly stated that this test is for surveillance/epidemiological purposes, not diagnostic.

This patient had a good clinical response to oral antibiotics. Virtually all of his presenting symptoms improved- except the cognitive impairments. These were marked and threatening his professional and personal life. He had short term memory loss, word finding difficulties, episodes of confusion and disorientation and an inability to concentrate. His depression and mood swings were marked.

By February 2008 he was about 50% better overall. Cognitive symptoms had not improved. A Lyme Western Blot performed at IgeneX showed positivity at bands: 18,34,39,41. He was CDC and IgeneX positive. I have found no literature which discusses the issue of Lyme seroconversion. This phenomenon is well known to physicians who treat Lyme disease. It is not discussed by the CDC or in IDSA guidelines. The CDC still maintains that a positive test is based on the two tier test or now- a Western blot showing 5/10 IgG WB bands. Those of us who treat chronic Lyme know three things: The two tier test is inaccurate, A direct Western Blot which incorporates IgG is unhelpful since the vast majority of seropositive patients have IgM responses only and many patients who test positive for Lyme only do so after Herx responses folowing antibiotic therapy. The IDSA does not address the existence of Lyme related Herx responses. IDSA physicians I have spoken with claim that seroconversion has no meaning; they believe it represents a false positive response. It is also trying(to say the least) that the CDC has failed to inform laboratories and physicians what a positive Lyme CDC test means- despite congressional instruction to do so in 2002- signed into law by President Bush. At the present time, every mainstream infectious disease specialist, neurologist and rheumatologist I interact with has mistaken beliefs about the meaning and use of this test. Furthermore, they believe that my interpretations of Lyme tests are tantamount to quackery.

A SPECT scan from June 2008 showed decrease perfusion to the frontal and parietal lobes in the brain. The Lyme denialist camp has claimed that SPECT scans have no validity. This denial is made in the face of evidence based data from Columbia University. This patient received a 5 month course of intravenous antibiotics, ultimately including Zithromax and Flagyl added to Rocephin.

His response was nothing short of spectacular. All of his symptoms, virtually 100% are gone. His mentation is perfect. He has not functioned physically or mentally this well in over 20 years. He is weaning of his antidepressants. His mood is normal.
His remission is maintained with oral antibiotics.