Lyme Research Progresses

As a scientist with Lyme disease, the early years of my illness were distinguished by a frustrating lack of information in the published literature. I had to really dig to find relevant literature, and what literature there was seemed minimalistic, narrow, and or contradictory with either my own experience or other articles. The doctors most skilled at treating Lyme disease were (for the most part) not researchers, and the researchers were (for the most part) not listening to the patients or those doctors.

Skip forward a decade, and boy have things changed. While many of the researchers I mention were doing their research even in 2006, the body of work has grown in a satisfying and very extensive fashion. In addition, several Lyme specific funding agencies exist including the Bay Area Lyme Disease Foundation, the Lyme Disease Association,, and the Lyme Research Alliance, and the Dr. Paul Duray Research Fellowship Endowment, Inc. Not only are these agencies helping to fund critical research, but they are beginning to find ways to encourage new people to study Lyme disease. For example, Stanford Medical School has formed theLyme disease working group to study Lyme disease thanks to the work of the Stand4Lyme foundation

I want to highlight some of the people whose work is worth watching:

Dr. Eva Sapi, associate professor at the University of New Haven, was a biologist and cancer researcher who contracted Lyme disease in 2002. She eventually abandoned her cancer research to study Lyme disease. She has published about different strains of Borrelia’s in-vitro response to antibiotics (basic research that will eventually help to guide treatment); studied the role of Borrelia in Morgellon’s disease, studied the formation of biofilms by Borrelia, and most recently developed improved methods for cultivating Borrelia (again, critical basic research that will help with testing and proof that Borrelia was not just present in the past, which antibodies show, but is currently living in the body). She has also helped with first steps toward exploring whether or not Borrelia can be transmitted sexually (a question this blog also considers) by showing that Borrelia can be present in vaginal fluids and semen along with Ralph Stricker.

Dr. Raphael Stricker is an Internal Medicine specialist in private practice. His research experience originated in the 1980s, when he was an HIV researcher associated with the University of California School of Medicine. After a lengthy break, he started doing Lyme research in 2002, and has over 60 published articles on Lyme disease, co-infections, and Morgellons. Some of his articles are highly specific, dealing with topics such as musical hallucinations and optic neuritis. Others tackle critical issues such as the use of long-term antibiotics. Still others help to address the lyme wars head on, including his work on guidelines, the patient-reported impacts of Lyme disease on quality of life, gender bias in lyme disease, and sexual transmission.

Lorraine Johnson, J.D., M.B.A. is the executive director of the Lyme Disease Association (LDA), a lawyer, a blogger on Lyme policy, and an advocate for all of us. She regularly conducts surveys through LDA’s network of patients, along with the broader network of people on the state-by-state Lyme mailing lists. This group of patients represents primarily those with chronic Lyme disease. She often collaborates with Dr. Stricker and I have been lucky enough to co-author with her as well. Some of her works includes a review article on Chronic Lyme and an article on the severity of symptoms compared to other chronic diseases and a meta-analysis of cases demonstrating persistent infection post treatment.

Dr. Brian Fallon is a professor of Psychiatry in the Columbia University College of Physicians & Surgeons, where he directs the Lyme and Tick-Borne Diseases Research Center, which I believe is one of the the first if not the first center associated with a major medical research university to explore issues relating to persistent symptoms and longer-term treatments (including a meta-analysis of 4 published studies which became famous during the recent case between the connecticut attorney general and the IDSA about their guidelines), including psychiatric manifestations of lyme, changes in the brain associated with persistent lyme symptoms. He is on the advisory board of the Lyme Disease Association, and his bio there nicely sums up more recent work of the center, not all of which I could find publications for, on topics such as identifying a more sensitive Lyme Western blot, identifying unique proteins associated with  Lyme encephalopathy (but not chronic fatigue syndrome or healthy controls), post-mortem studies of patients with chronic Lyme symptoms and identifying of biomarkers to help guide treatment recommendations.


Dr. Monica Embers (faculty at the Tulane National Primate Research Center, and one of several researchers funded by the Bay Area Lyme Disease Foundation), along with Dr. Barthold and others studied persistent infection using monkeys. This allowed them to study persistence in ways that are not possible in human patients. Lorraine Johnston summarizes the implications for treatment and explores why this study was published 12 years after a parallel study by Wormser (of humans) in her policy blog. Dr. Embers also studies a variety of other topics including how Borrelia evades the immune system, the impact of slow growth rates of Borrelia on its persistence in the presence of antibiotics and the history, pros and cons of vaccination strategies.

Dr. Alan MacDonald runs the Dr. Paul Durray Research Fellowship Endowment. He has worked on issues such as long term persistence, but some of his most unique and impactful work focuses on the impact of Borrelia on the brain, including work on Alzheimer’s disease and the possibility that associated plaques are actually caused by Borrelia; Dementia and the presence of spirochetesMS and its relationship to Lyme disease; and Borrelia biofilms.

I am certain that this is an incomplete list, and for example it does not touch on the set of people who have been instrumental in writing treatment guidelines, nor does it highlight most of the research on Lyme in animals who can get it (e.g., dogs), studies of how Lyme spreads in the ecosystem, and so on. That said, I encourage you to keep an eye on the work of these outstanding researchers. We are lucky to have them, and their work spans the gamut from test-tube studies to surveys of patients to field studies of treatments.


Strain-based immunity?

Strain-based immunity?

This news article highlights results from a study exploring whether people exposed to a particular strain of Lyme disease are immune to that strain for any length of time. The news article gives a nice layman’s summary of the research article. The main result is that it seems statistically more likely that the participants were immune to the strain they were re-infected with for some time, since the strains present in their subsequent infections tended to be different than the strain present in their initial infection. The participants in this study only included people who had multiple culture-confirmed erythema migrans rashes. Blood and skin were cultured to identify Bb strains could be extracted. In addition, the participants were treated ‘with standard courses of antibiotics’ after each rash (I read this as ~3 weeks oral doxy), at which point the rash resolved. Participants had evidence of disseminated infection before treatment, meaning the results cannot be attributed to only involving people who were just infected and quickly and decisively treated. Most participants were infected at least a year after their initial infection. 

There is no arguing with the fact that participants in the study had been infected with multiple strains, likely at different times. However, the authors do not address the question of whether the original strain could still be present and even symptom causing, just not implicated in the rash. The authors do state that ‘our findings do not support the hypothesis that relapses in antibiotic-treated patients would be more likely to be culture-negative’ and then go on to say that 63% of participants had a culture positive second episode. However, since the inclusion criteria for the study was to have a rash, which indicates some sort of presence of Bb on the skin, it is not surprising to me that culturing was relatively successful (I do not have a reference handy to back up the idea that rashes would be easier to culture, does anyone know of one?). In addition, if rashes are associated with early stage infection the inclusion criteria may even have biased the study toward people who are likely to have been re-infected. So one possible explanation for the results is that people developed immunity. But I think another possible explanation is that when people were re-infected with new strains, they developed new erythema migrans rashes. However, when people are re-infected with or relapsing from strains with which they were previously infected, they are harder to culture and their symptoms express in other ways. The authors do not address this possibility in their article.

Evidence of a distinct post-treatment condition in humans makes Discover’s top 100

Evidence of a distinct post-treatment condition in humans makes Discover’s top 100

 “At least now we know we’re not just speculating about the differences between chronic fatigue syndrome and post-treatment Lyme.”

—– EDIT: I posted this before reading the original article (sorry!) and misunderstood the Discover article. There are “biomarkers” that persist post treatment, but this particular study doesn’t demonstrate the existence of the Lyme bacteria itself post treatment —

Original article: Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, et al. (2011) Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

One more reason for doing Yoga

I’ve mentioned before that Yoga is a key part of my health maintenance and relapse protocols. Today I happened upon an article that may explain why I find Yoga so beneficial: It directly effects the production of compounds that enhance the immune system. Here’s a quote from an article in Salon discussing the study:

“The researchers found that the nature walk and music-driven relaxation changed the expression of 38 genes in these circulating immune cells….  yoga produced changes in 111”

I also looked up the original study  (published in 2012, and open access). On reading more deeply, it appears that the research Salon is referring to is focused on a combination of pranayama (the facet of yoga concerned specifically with breathing) and asana practice (the facet of yoga concerned with poses). They also review past work on the physiological effects of yoga practice. The study tested for gene expression 2 hours after practice but does not shed light on the effects of regular yoga practice over time, or the length of time for which a specific practice has an impact.

Qu S, Olafsrud SM, Meza-Zepeda LA, Saatcioglu F (2013) Rapid Gene Expression Changes in Peripheral Blood Lymphocytes upon Practice of a Comprehensive Yoga Program. PLoS ONE 8(4): e61910. doi:10.1371/journal.pone.0061910

Strong Evidence of Lyme Persistence in Monkeys

A recent study (2012) proved the persistence of Bb (Lyme) in Rhesus Monkeys. The researchers waited 27 weeks after infection in their first experiment, which is all I’ll discuss here, and then tested with multiple methods. The Eliza declined in treated animals, which might be interpreted to say treatment worked. However, in fact, spirochetal DNA and RNA were both detectable in multiple treated animals (not all, but some). DNA and RNA means that Bb was both present and active/alive in some sense (being transcribed). Here’s a quote:

Continue reading “Strong Evidence of Lyme Persistence in Monkeys”

Disability Accommodations?

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.

First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.  Continue reading “Disability Accommodations?”

How does all that misinformation online affect Lymies?

I have been working toward this for two years now, and I can finally talk about the work we’ve done with the help of many volunteers. My paper, “Competing Online Viewpoints and Models of Chronic Illness” will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you with a medical background, in my field, this is equivalent to a journal publication in impact. Needless to see, I’m very excited to have finally gotten the work to this point, and extremely grateful to all of my co-authors, who helped me with every aspect of the research and writing, and all of the lymies who helped us to collect the data on which the study is based. I could go on for a long time about the personal accomplishment this represents and what it means to me (and I may in another post), but what I want to do here is say a little about what we did.

I am not a doctor, and however much I would have liked to do so, I am not qualified to conduct research that can identify a cure or otherwise directly affect the medical experience of individuals with Lyme disease. Rather, my area of specialty is information technology, and how people interact with it. Because of this, my work focused on how people with Lyme disease use online information in the course of their illness. I specifically wanted to understand how people negotiate the competing viewpoints present online (consider the contrast between the IDSA/Mayo Clinic/CDC/Wikipedia style information and that found on websites such as CALDA and ILADS). I knew that I personally had encountered both sets of information when I was diagnosed, and as a result I ended up putting my trust in doctors who did not treat me correctly. In my study, I wanted to document what happened to others, and identify possible solutions to any problems we discovered. My next step will be to begin to implement these solutions.

So what did we find? We found many examples of people who grappled with the mix of information online. Surprisingly, the kind of information that people trusted seemed to be affected by their diagnosis experience/initial beliefs about Lyme disease: Continue reading “How does all that misinformation online affect Lymies?”