Links…

This blog is a great place to read about things, but if you want discussion, you may want to consider joining one of the many state-by-state mailing lists (depending on your location ([StateLyme]@yahoogroups.com, e.g., PennsylvaniaLyme@yahoogroups.com)). If you’re from the Pittsburgh area, you can join a Yahoo Groups mailing list called PittsburghLyme@yahoogroups.com, and you may also want to join PennsylvaniaLyme@yahoogroups.com

There are two main sets of beliefs associated with Lyme Disease. They mainly differ in their beliefs about what happens after initial infection and treatment (almost everyone agrees that once lyme is diagnosed for the first time, antibiotics should be used, though there is disagreement regarding for what length of time they should be taken). Camp one tends to believe that chronic Lyme exists and can occur when Lyme is not eradicated after initial treatment. Camp two tends to believe that Lyme rarely causes a chronic condition, and that when it does, it is an auto-immune problem or caused by re-infection by a new tick. (more on this under the tag “lyme-wars“). Links below are grouped based on whether they fall into Camp one, Camp two, or are a balanced view across both.

It should be noted that most specialists (neurologists, infectious disease docs, and so on) vehemently believe in Camp two, while many patients and physicians who specialize in treating lyme strongly believe in Camp one. However, as Lorraine Johnson eloquently argues, these “Camps” represent two standards of care, and patients should be informed about both and given a say in how they are treated.

Among doctors who are not specialists (e.g., most family physicians), Lyme disease is frequently misdiagnosed or not thought of, and beliefs tend to align with Camp two. The unwillingness of each side to listen to the other pushes them further to the extreme than is warranted in many cases. This leaves patients in a conundrum in which their physical experience may conflict with what doctors (typically from Camp two) believe. Their doctors may not even mention the possibility of post-treatment illness or wish to engage in follow up treatment of any kind, may tell them to expect a simple cure (e.g. see my experience). This is truly sad since in reality leaders in both groups have written that patients may continue to feel ill after treatment (most typically, the cause and frequency with which this occurs is in dispute, not the possibility).

If you are reading this site, you probably have a reason to figure out what you believe. Below are some links that may help you.

Balanced view:

• Lyme Disease Research Database. A blog and research database presenting a balanced viewpoint.
• MedWorm Query: Lyme Disease. An unfiltered feed of all recent research on the topic
• Pamela Weintraub, Cure Unknown
• Fallon, Neuropsychiatric Manifestations of Lyme Borreliosis (Psychiatr Q, 1992, 63:95-1)
• The Lymebrary
• The talks given at the IDSA hearings on this include written statements and slides by top researchers arguing for both sides of the issues.

Camp one:

• Database of doctors who fall into this camp (few and far between, unfortunately!)
• Details on how to identify and treat recurrent lyme by Burrascano, one well known lyme literate physician. Also includes details on diagnosis
• Details on how to treat chronic lyme disease by Dr. Klinghardt, a physician who combines allopathic medicine with complementary and alternative methods.
• Caat’s page on Chronic Lyme Disease
• ILADS — International Lyme and Associated Diseases Society. The doctors associated with ILADS believe that lyme may recur.
• Lyme Disease Association. Like ILADS, this website follows the belief that lyme may recur chronically. They also publish videos of some of the speeches and research from their yearly meeting.
• LymeInfo.net
• Harvey, W. T. and Salvato, P. ‘Lyme Disease’: ancient engine of an unrecognized borreliosis pandemic?, Medical Hypothesis, 60(5), 742-759. 2003.
• T. Grier (2008). “The complexities of Lyme Disease” From the Canadian Lyme Disease Foundation. A very accessible review of the science supporting Camp one with interpretations.
• John D. Bleiweiss, M.D. (1994): “When to suspect Lyme” (and a discussion of the same on lymenet)
• Brian Rosner, The Top 10 Lyme Disease Treatments
• Stephen Harrod Buhner, Healing Lyme

Camp two: early and post-lyme

• A review of camp 2′s position from quackwatch.org
• American Lyme Disease Foundation
• IDSA — Infectious Disease Society of America. IDSA doctors believe that chronic symptoms occuring after lyme likely have unrelated causes.
• Article on Dr. Alan Steere, who first identified lyme’s and how it is transmitted from ticks to humans in the 70s.
• Feder, H. M. Jr., Johnson, B. J. B., O’Connell, S., Shapiro, E. D., Steere, A. C., Wormser, G. P., et al, A critical appraisal of ‘Chronic Lyme Disease’, The New England Journal of Medicine 357, 1422-30. 2007.

Discussion forums/mailing lists (likely to be heavily in Camp one)

• Robynn’s Lyme List
• sci.med.diseases.lyme
• Lymenet.org