The Lymebrary Gets a New Start

Hello, everyone,

I am thrilled to be able to revive the Lymebrary, a project that had begun as a library thesis project back in 2008.

Work commitments had put it on hold after 2012, but it was in my head to bring it back online at some point. That point is now. With a grant from the National Library of Medicine/National Institutes of Health, and help from the wonderful Act of Design, the Lymebrary is back. It is a small-but-mighty repository of resource links to online articles and websites of about tick-borne diseases. In addition to a basic search engine, the website is now enhanced with Search by Topic and Search by Genre pages to make searching easier. I will post from time to time to call attention to some interesting bits of knowledge contained within its small treasure trove. I will add more links to resources and clean up the old links. And I will continue to hope that, someday soon, testing and treatment will be so much improved that websites such as this will be needed no longer.

Best wishes,
The Lymebrarian

Bartonella Can Be Tick Borne, Says Study

Doctors affiliated with the International Lyme and Associated Diseases Society (ILADS) have for years treated patients for what appeared to be bartonellosis, infection with Bartonella henselae bacteria. Bartonella can also cause cat-scratch disease, which is usually mild and self-limiting but can be more severe in immune-compromised people, such as AIDS patients. ILADS doctors noted that Bartonella in their Lyme patients could also be severe.

ILADS doctors asserted that Bartonella could be tick borne, a coinfection to Lyme disease along with Anaplasma, Ehrlichia, and Babesia infections. The guidelines from the Infectious Diseases Society of America (IDSA), however, specifically recommended against Bartonella treatment (page 1094), and their lead writer wrote in the CDC publication Emerging Infectious Diseases in 2010 that "To date, no report has documented transmission of B. henselae or any other Bartonella spp. to an animal after a tick bite."

In a recent study published in PLoS Neglected Tropical Diseases, French researchers in collaboration with the US CDC demonstrated that Ixodes ricinus ticks could transmit Bartonella birtlesii from infected to non-infected mice. This is a huge step forward in proving that other Bartonella species can also be spread by other Ixodes ticks to other mammals. The information gap is beginning to close. As the author summary states, "Consequently, bartonelloses should now be included in the differential diagnosis for patients exposed to tick bites."

Reis, C. et al (2012). Vector competence of the tick Ixodes ricinus for transmission of Bartonella birtlesii [Electronic version]. PLoS Neglected Tropical Diseases(5) 5, e1186. Retrieved 2/4/2012 from http://www.plosntds.org/article/info:doi/10.1371/journal.pntd.0001186

Genes Released from Patenting

The New York Times reported today that the US Department of Justice has declared that genes are not patentable, reversing a decades-long trend.

In the past, scientists have argued that the human manipulation that isolated a gene through chemical means made it a man-made substance, able to be patented. But regardless of the method being used to detect the gene, it is the gene itself being detected, not a new material, and so such discovery should be made available to all.

If this ruling stands, it will have application in the field of tick-borne illness. This year, Benjamin Luft at SUNY/Stony Brook has announced the genome mapping of 13 strains of Borrelia burgdorferi, the bacterial cause of Lyme disease, with many more to be published soon. If the genes become public domain, many different research organizations can freely use the genes to work on treatments. The impetus for doing such research will still exist at the level of patenting new drugs and treatment modalities.

The role of patents, copyrights, and trademarks is to encourage the development of new and helpful products through a profit motive, not to reward such work with a monopoly, which is what gene patenting was doing. I hope that this new ruling will be upheld, and that researchers will take advantage of the opportunity to develop effective treatments for many illnesses, including Lyme disease.

Eyes on the IDSA

Live hearings will be conducted July 30 to review the 2006 guidelines for Lyme and other tick-borne diseases published by the Infectious Diseases Society of America. The review by an impartial panel is the result of a legal agreement between the IDSA and the attorney general of Connecticut, following an investigation into alleged improprieties and conflicts of interest on behalf of the guidelines authors. The panel will hear testimony from clinicians, researchers, and others who espouse various opinions on the proper diagnosis and treatment of tick-borne disease.

The hearings will be made public through a live feed on July 30, 8-5, at http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974 and then will be archived on the IDSA website.

The legal agreement can be found at http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf

and the press release about the agreement is at http://www.ct.gov/ag/cwp/view.asp?Q=414284&A=2795

This hearing will be the confluence of many current medical issues: conflicts of interest, patients' rights, generalizing research, the weight given guidelines by insurance companies and clinicians, emerging infectious disease, evidence-based medicine, and the standard of care. As the US government looks to improve access to quality healthcare, I hope these issues are reflected on by researchers, clinicians, and legislators alike.

Best Lyme Information of 2008

Happy New Year and Happy Inauguration Day. As I look forward to new and better days, I also looked back to see what information objects had the most impact on the understanding of tick-borne disease. Information can come from many sources: research, discussion, observation, or performance, to name only a few. But when that information is put into a tangible form and is made accessible, it becomes a resource that can be examined over and over again for further insight.

Here, then, are some resources from 2008 that are contributing to our collected knowledge of tick-borne disease and the people who endure it. In no particular order, they are:

http://www.cdc.gov/eid/content/15/1/66.htm?s_cid=eid66_e
Isolation of Candidatus Bartonella Melophagi from Human Blood
The discovery of a new Bartonella infection in humans, indicating that we haven't yet discovered every tick-borne disease there is.

http://jcm.asm.org/cgi/content/abstract/JCM.01183-08v1
Borrelia Carolinensis Sp.Nov. - A New (14th) Member of Borrelia Burgdorferi Sensu Lato Complex from the Southeastern United States
A new Borrelia species that infects humans is discovered.

http://www.pnas.org/content/early/2008/12/05/0810519105.abstract
NKT Cells Prevent Chronic Joint Inflammation after Infection with Borrelia Burgdorferi
An indication that NKT cells may make a difference in inflammation and the disease itself.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)74639-0/fulltext?_eventId=login
Chronic Lyme Disease: The Debate Goes On.
Overview of the unresolved problem of chronic Lyme disease.

http://www.lymerights.org/html/house_debate_on_lyme_bill.html
A heated discussion on the floor of the House about not moving forward on the Lyme bill, HR741.

http://www.ncbi.nlm.nih.gov/pubmed/18971914?dopt=AbstractPlus
Severity of Lyme Disease with Persistent Symptoms
This double-blind placebo-controlled study indicated that treating Lyme for 3 months of oral antibiotics improved the quality of life.

http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.1000169
Molecular Mechanisms Involved in Vascular Interactions of the Lyme Disease Pathogen in a Living Host
The discovery of how Lyme bacteria move and anchor themselves to blood vessel walls. Includes charts, images, tables, and videos.

http://www.plospathogens.org/article/fetchArticle.action?articleURI=info:doi/10.1371/journal.ppat.1000090
Real-Time High Resolution 3D Imaging of the Lyme Disease Spirochete Adhering to and Escaping from the Vasculature of a Living Host
The description and images of live, infectious Borrelia burgdorferi spirochetes disseminating in the blood and through mouse tissues. Includes charts, illustrations, images, and videos.

http://www.jneuroinflammation.com/content/pdf/1742-2094-5-40.pdf
Persisting Atypical and Cystic Forms of Borrelia Burgdorferi and Local Inflammation in Lyme Neuroborreliosis
Cyst, round, and granular forms of Borrelia burgdorferi were induced in cultures, rat and human nerve tissue, and found in the brain tissue of humans infected with Lyme disease. Includes images.

http://jcm.asm.org/cgi/reprint/46/9/2856
Bartonella Sp. Bacteremia in Patients with Neurological and Neurocognitive Dysfunction
A study producing evidence that Bartonella may produce chronic symptoms.

http://aac.asm.org/cgi/reprint/AAC.01050-07v1
Persistence of Borrelia burgdorferi Following Antibiotic Treatment in Mice
A mouse study that showed that Lyme bacteria can persist following "adequate" antibiotic treatment.

http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf
An Agreement between the Attorney General of the State of Connecticut and the Infectious Diseases Society of America
A legal document spelling out a systematic review of the IDSA Lyme treatment guidelines by an impartial panel.

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0001633
Clocking the Lyme Spirochete
Borrelia burgdorferi moves faster than any other spirochets, and faster than the blood cells which kill it.

Cure Unknown by Pamela Weintraub. A book that chronicles the politics behind the discovery, diagnosis, and treatment of Lyme disease.

Under Our Skin
A documentary film showing the severity of Lyme and the controversies involved with treating it.

Launching the Lymebrary

I am very proud to launch the first phase of the Lymebrary, a project of the Lyme Disease Digital Library. The idea for the project was born over 2 years ago, when I saw that there was a huge need to pull together tick-borne disease resources from wherever they could be found, and make them searchable.

Patients could certainly benefit from the convenience of having one trusted portal, as could family members, healthcare professionals, attorneys, legislators, insurers, and advocates. Researching toward a cure and extending compassion toward the patient are two sides of the same coin when it comes to tick-borne disease, and I believe that good information is the key to improving both.

There are many points of view when it comes to tick-borne disease and its origins, vectors, chemistry, symptoms, and treatments. New facts continue to be uncovered monthly. Sometimes good information comes from humble research. Sometimes illogical conclusions come from impressive research.

Articles, handouts, and websites of all types exist all over the Internet, and many books dealing with the subject are in print. I realized that it would be my task to pull together quality information, as in a library, and offer it without comment, trusting in library users to discern what would serve their particular needs.

One of the problems inherent in Internet searching is that much information is hidden on the “invisible Web” – databases and online scientific journals that are available by subscription only. In a future phase of the Lymebrary, we hope to offer some of these limited-access resources. But in the meantime, if you are looking for something important to you, contact us to see what we can do to get it to you.

Over time, a number of individuals have stepped forward in support of the project, for which I am extremely grateful. Let me extend my thanks to the board of directors and the advisory board of the Lyme Disease Digital Library, and to so many others who offered good questions and good feedback. I promise to thank you in person when I see you.

Thanks also to the faculty and advisors at Syracuse University, the University of Wisconsin, Rutgers University, and the University of Pittsburgh for fielding my endless questions, comments, and papers from the perspective of creating the Lymebrary. Thanks also to Act of Design for making the vision a reality, and to the director and staff of the Auburn Public Library for patiently listening to my rants and my discoveries.

I welcome your questions, your feedback, and your suggestions. Please check back often, as we will be adding new materials and new facets to the site. This blog will serve to offer tips, announce new features, and talk about Lyme disease issues. The Quote of the Week is there to offer food for thought.

Only one thing will make me prouder than the launch of this site, and that will be the day we can dismantle it, because the cure for Lyme disease will have been found, and we will no longer be needed.