It has long been known that ticks harbor Bartonella and that humans who have Lyme disease may also have Bartonellosis. However, the actual transmission of Bartonella from tick to host has not been demonstrated until a mouse study by Drs Reis and colleagues was published in May 2011. The study is available free on line for those interested. “This work represents the first in vivo demonstration of a Bartonella sp. transmission by ticks. It . . . corroborate[s] a prospect that ticks play a role in the natural cycles of some of the bartonellae including those pathogenic for humans. Consequently, bartonelloses should be included in the differential diagnosis for patients exposed to tick bites.” Continue reading →

On January 17, 2012, Congressmen Smith, Wolf, and Gibson called on the National Guidelines Clearinghouse (NGC) to remove the IDSA’s outdated Lyme guidelines. We applaud them! But, this, of course, is the middle of the story not the beginning, so let’s go back. Continue reading →

There continues to be high interest in the Lyme community about the recently available Borrelia culture blood test. Here’s an update. Continue reading →

Let me thank everyone who responded to the Patient Preferences Survey! We have drawn over 5,200 responses, which is just simply fabulous. We will now start the process of reviewing the responses with an eye toward publication of the results. Our last survey was published in Health Policy, a widely respected peer reviewed journal. Those results now help inform the base of knowledge of the access to care problems that Lyme patients face. Our goal with these surveys is to open the space for conversations in the public health arena about what is really going on with Lyme patients from their perspective. We are trying to give voice to the patient community, which is all to often completely ignored in conversations about Lyme disease. Your willingness to participate in these surveys allows us to do that. So hats off to you for being so vocal and letting us know your views. Continue reading →

Since we launched this survey in early October, we have drawn over 4,800 responses. The survey will end on January 1 so I encourage those of you who have not yet responded to take the time to do so. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. This survey aims to find out what you think is important about treatment options, choices, risks and benefits. Respond to the survey and remind the IDSA that patient values are central to treatment guidelines! Continue reading →

A CBS news story on Lyme disease has patients concerned about the misinformation that it promotes. On top of that, the story does not have the level of journalistic integrity that serious topics should have. For one thing, there is the title: “Lies and Truths”. Lies are statements that are known to be false that are told to intentionally deceive another person. Lies are not issues that are matters of scientific debate. When a science article title uses the word “Lies”, it tells the reader that it is not about science. Second, the article is a single source article. This means unlike most journalism and particularly good science journalism, there is no attempt to present different sides of the issue. One side, in fact, one person’s opinion is put forth as uncontested “truth” with no counterpoint. Third, the piece is edited by the Orly Avitzur, M.D., M.B.A., Editor-in-Chief of the American Academy of Neurology (AAN). You may recall that the AAN was part of the antitrust investigation by the Connecticut Attorney General into the Lyme guideline development process by the Infectious Diseases Society of America. The reason? Continue reading →

We recently received a response from the NIH regarding our concerns about the NIH tick feeding study and the risk of tickborne infections from the larval ticks that researchers intend to place on patients to feed. We have written the NIH about this several times. Our latest letter focused on the newly identified pathogen, Borrelia miyamotoi, which can be transmitted to larval ticks through the mother's eggs. We asked the NIH to tell us what bacteria they test for in the larval ticks to ensure that patients in the study are not at risk. According to the NIH, the following pathogens are screened for: Borrelia burgdorferi, Babesia microti, Anaplasma phagocytophilum, Borrelia miyamotoi, Bartonella spp, Rickettsia sp., deer tick viruses and orbiviruses. We are glad to see that these pathogens are being screened for but remain concerned that unidentified pathogens nevertheless place patients at risk in the study. Continue reading →