Thursday, March 25, 2010

Lyme Disease: The Raging Public Debate

The following comments in red express my opinions concerning the subject discussed below in black ink. Those excerpts are from Clinical Laboratory News.

 First of all long term vague and acute problems from Lyme disease are not a rare occurrence. While many people appear to be "cured" from an acute episode of Lyme disease with the 3 to 4 weeks of antibiotics, a large proportion of the population continues to suffer from both active infection and or permanent damage due to the pleomorphic and stealth tactics of this microbe. The mainstream medical authorities do not speak of the inaccurate testing and the germ's pleomorphic nature(ability of the organism to change shape,hide out in the tissues, evade the immune system  and current testing capabilities). There are over 300 strains of the Lyme spirochete and testing is only done for several strains.

My question is...if the patient is still ill with the exact same symptoms they had before this short term antibiotic treatment, what criteria does the IDSA use to determine with such authority and finality....that there is no longer an active infection? Again, testing is inaccurate and there are many strains of this microbe which seem to require different antibiotics and combinations of antibiotics for the purpose of targeting the different forms of this pathogen. The treatment protocol recommended by the IDSA is gravely oversimplified. and obviously suggests a "one size fits all" protocol.

Observant clinicians realize that clinical judgement should still be the main tool used to diagnose and treat Lyme. Thousands upon thousands of people who receive short term treatment for Lyme disease are cut off from the antibiotic treatment before or right when they are beginning to improve. I had undiagnosed Lyme for 8 years which allowed the Lyme spirochete to become deeply entrenched. When I finally began treatment, it took 4 months of high dose doxycycline to get me to the point where I began to notice even a small improvement. Continued antibiotics were necessary for further improvement. Doctors who are truly observing and monitoring these patients, have no doubt that long term antibiotics are helping patients to recover their lives.

Is it arrogance or stupidity or criminal activity(conflicts of interest) that gives these so-called medical authorities the audacity to so blatantly discount the obvious observations of doctor , patients and family?

Active Lyme disease CAN cause many different types of symptoms, including what these authors say are non specific. Their arguements make no sense. Antibiotics don't help everyone with chronic problems for Lyme disease, however, a decent length of time should be given for the opportunity for improvement. Many patients who have had Lyme disease longer than they have been aware of, and finally begin the proper antibiotic for their particular strain, actually become more symptomatic before they begin to improve. More time is needed. When patients are labelled as cured before they are cured...medical costs for insurance companies become much higher due to all the symptomatic treatments the patient has to then utilize....due to an often progressive underlying infection that is being ignored. Underlying chronic infections are much more profitable for the drug companies than when a patient is cured. After reading the excerpts below, please see the article at the following link for an excellent overview of the politics of Lyme disease. I highly recommend it....

Lyme Disease

Finding the Balance of Diagnostic Testing and Clinical Disease Features

By Glen T. Hansen, PhD and Shulamith C. Bonham, MD
January 2010 Clinical Laboratory News
"Lyme disease, a tick-borne illness caused by three pathogenic species of the spirochete Borrelia burgdorferi sensu lato, was first recognized in the U.S. in 1976 in Connecticut children who were thought to have juvenile rheumatoid arthritis. Additional syndromes, including erythema chronicum migrans and Bannwarth’s syndrome were later linked to Lyme disease with the recovery of a previously unrecognized spirochete from the tick vector of infected patients (1, 2). Since these initial reports, debate, misunderstanding, and controversy have surrounded the treatment and diagnosis of Lyme disease.

Recent legal and public inquiries brought about as a result of a highly publicized lawsuit between the Infectious Disease Society of America (IDSA) and the state of Connecticut has thrust Lyme disease into the forefront for clinicians and clinical laboratories. Here we describe the disease’s etiology and clinical manifestations, as well as the proper use and interpretations of tests for Lyme disease."

The Raging Public Debate

In 2006, a panel of experts convened by IDSA developed clinical guidelines for managing patients with Lyme disease and concluded that “there is no convincing biologic evidence for the existence of symptomatic chronic Borrelia burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (>6 months) subjective symptoms after recommended treatment regimens for Lyme disease” (12). This contention is supported by the clinical trials that found that long-term treatment with antimicrobials was not effective for patients who believed that they had chronic Lyme disease (14).

In the fall of 2006, IDSA received a subpoena from the Attorney General (AG) of Connecticut, in which the organization was ordered to submit documents that were relevant to the preparation of the 2006 guidelines for management of Lyme disease. In the state of Connecticut, the AG acts as the chief law enforcement officer and has the authority to enforce the Connecticut Antitrust Act. This action appears to be a response to the concerns of Lyme disease advocacy groups about the IDSA guideline, which raised doubts about the diagnosis of “chronic Lyme disease” and discouraged long-term antibiotic therapy.

Clearly, the nonspecific symptoms attributed to Lyme disease are often highly prevalent in the general population. In initial reports of the disease, the proportions of patients who also had nonspecific symptoms such as arthralgia, myalgia, headache or fatigue were substantial. While patients included in these initial reports met specific clinical diagnostic criteria for Lyme disease, some observers have drawn the erroneous inference that nonspecific symptoms alone could often be the sole manifestations of Lyme disease. Such symptoms also can be caused by common viral illnesses or may be manifestations of either anxiety or depression. Nevertheless, the idea that Lyme disease might be the cause of nonspecific symptoms alone, without any objective signs of the illness, has been publicized by patient-advocate groups and augmented by extensive misinformation in the press and on the Internet (19). In some instances, individuals even fear that nonspecific complaints may be a manifestation of Lyme disease which, if not detected and treated, could lead to serious chronic disability.

Although long-term health problems due to Lyme disease have been documented, they are still considered rare and have occurred almost exclusively in adults with objective evidence of Lyme disease, most of whom either were not treated with anti-microbials or received treatment only many years after the onset of Lyme disease (20). The challenge for clinicians caring for such patients is to be able to address concerns without dismissing them.

Concern on both sides of the debate has recently led to a mutually agreed upon action plan, including recruiting a review panel whose task will be to determine whether the 2006 Lyme disease guideline should be revised or updated. While the debate over Lyme disease and its pathogenicity continues to evolve, the outlook for patients is positive. After more than 30 years of scientific and clinical research, Lyme disease, in the vast majority of cases meeting both clinical and laboratory criteria, responds to a relatively short course of orally administered antimicrobials with long-term cure and no adverse sequelae. Resolution of the concerns about the disease will likely come from medical and scientific forums, rather than the political arena.


  1. We should note that no one has ever presented scientific evidence that Persistent Lyme cannot happen.

    We need to change the trajectory of the debate and stop framing it as though we must prove that people who are sick are indeed sick. Instead, they should prove that they aren't. That should be the required standard if you're going to deny a suffering person treatment.

    Thank you for your work raising awareness.

  2. I absolutely agree with you. If patients are going to be denied treatment, show us the proof we are not still infected. This proof must address the different strains of Bb that are not included in the current testing...and it must include proof that the patient's problems are not resulting from a different form of the spirochete(pleomorphism)that does not show up on testing.