Lyme disease is the result of infection with one or more species of the spirochete Borrelia Burgdorferi. It is generally thought that the infection is the result of a tick bite, which about 50% of the time results in a rash, often described as a ‘Bulls Eye’ rash, but which can vary in appearance.
Symptoms of untreated Lyme disease typically start with nondescript flu-like symptoms (fever, chills, body aches, headache) but eventually include joint aches (which may migrate from one joint to another over days), neuropsychiatric problems (e.g., Bell’s palsy-paralysis of one side of the face) fatigue, numbness, weakness, mood disorders, OCD, psychosis, cognitive impairment, seizures. Some people report abnormal heartbeats (conduction abnormalities), or gastrointestinal problems.
There is an extreme polarization of opinion around the twin questions of diagnosis and treatment for those with Lyme disease. The highly charged and politicized conflict between the Infectious Disease Society of America (IDSA) and International Lyme and Associated Diseases Society (ILADS) is well described in Pamela Weintraub’s excellent book, Cure Unknown.
On the one side, is the position of the Infectious Diseases Society of America (IDSA), which has a strict requirement for diagnosis and treatment (http://www.idsociety.org), and has concluded that long term antibiotic therapy (greater than one month) is not indicated in those who continue to have symptoms despite the normal treatment regimen (2-4 weeks of oral or IV antibiotics, depending on the symptoms and laboratory data).
On the other side, is The International Lyme and Associated Diseases Society (ILADS), which is a conglomeration of “Lyme Literate” physicians, non-physician health care practitioners, patients and their families. They believe that scientific data has proven that residual symptoms are the result of either co-infections, or chronic infections. The tick often contains numerous bacterial and parasitic organisms, such as Bartonella species, Babesia, Ehrlichia, etc. Borrelia Burgdorferi infections may develop, as part of the bacterial life cycle and protective mechanisms, intracellular forms. Because of this, and other defense and host mechanisms, it may not be detectible using routine testing. Furthermore, standard Lyme disease testing (a Western Blot) is believed to highly insensitive, by ILADS, giving rise to many false negatives.
Having followed this debate for more than a decade, I have come to the following ‘conclusions’, none of which are written in stone:
1. Standard Western Blot testing is very insensitive, leading to many false negatives. To understand this, one must understand the way the typical Western blot is done. First, a drop of blood is applied to a gel. An electric current is applied, and this separates the different proteins from each other, based on different characteristics of the proteins. The proteins are then transferred to a membrane where they are allowed to react to antibodies. A chemical reaction produces light (called chemo-luminescent detection) which is then detected by photographic film. The image is analyzed by densitometry, which evaluates the relative amount of protein staining and quantifies the results in terms of optical density (OD).
2. The key issue here is that if one protein band has an OD of less than 100, the test is reported by the traditional labs as negative, but if the OD is 100 or greater, it is reported as positive. If an OD of 99 is read as negative, and an OD of 100 is read as positive (the difference between the two is marginal) it is literally absurd to make the distinction or diagnosis based on such criteria. (In fact, the Centers for Disease Control established these guidelines in the 1970’s when Lyme disease was first recognized, for research and tracking purposes-not clinical purposes).
3. By analogy, it would be the equivalent of diagnosing a person with diabetes if their fasting blood sugar is over 120, but diabetes-free, if the fasting blood sugar is 119. That simply is not how the body (nor the world, for that matter) works. The best Western Blot test is that which shows the clinician a picture of the bands, with a specific optical density for each, i.e., “ OD 63% in Band 28”. Using this grey scale, along with symptoms and signs, as well as exposure, one can more easily make a diagnosis with higher reliability.
4. The terrain must be ‘repaired’, if one wishes to recover from chronic infections of any type. Louis Pasteur, the founder of the Germ Theory of Disease, is reported to have acknowledged, just before his death that the terrain (i.e. the host’s condition physically and mentally) is more important than the ‘germ’. I would say that like all things, disease is neither caused completely by the germ nor is it caused completely by the terrain. Rather it is the interaction of the bacteria/virus/parasite with the terrain. Therefore, as part of the treatment for those with any chronic illness, including Lyme, the terrain must be assessed and corrected in order for the immune system to recover, with the help of antibiotics where appropriate.
5. All that is claimed to be Lyme is not Lyme. I have a close friend who was diagnosed with a tick-borne disease. She was on antibiotics for six months and was not improving much at all. It turned out that the convector system at work was quite toxic, and once replaced, her symptoms (e.g., extreme fatigue, cognitive difficulties, achiness) cleared within days. Clearing gluten from her diet, made further improvement. The clinician must be treating much more than Lyme and must always keep their mind open to other diagnostic possibilities.
6. I am far from convinced about the general usefulness of long-term antibiotics (more than a few months), as I have not seen clear-cut improvement in many patients with this approach. I am reminded of one patient who had years of antibiotics for multiple tick-borne infections. When we corrected her diet and GI tract, she was soon off antibiotics and doing quite well.
7. Chronic Lyme disease symptoms are frequently the result of a failure to deal with other problems (e.g. the functional medicine systems model, which includes nutrition, gluten, mold, psychological, toxic, hormonal factors, etc.) as well as a likely disturbance in the immune system itself, which is in a feed forward chronic pro-inflammatory state.