Help Pass Federal Legislation

I know our collective political attention is focused on the presidential election at the moment, but the day to day acts of government and citizenship also deserve our attention. The Lyme community is mobilizing once again to try to pass legislation, which is very much needed. Please help. In the past, it has successfully passed legislation that helps to address needs such as education, informing patients that there is more than one standard of care, and asking insurance companies to pay for long term antibiotics. A summary (last updated in 2014) can be found on lymedisease.org, which gives a sense of how long this has been a focus of the community:

Every year since 1998, advocates have tried to pass federal bills to create a balanced advisory committee and a federal program to address the growing epidemic. None of the bills even made it out of committee until 2014.

The time has come again to move this effort forward — by attaching an amendment to a major piece of health care that the Senate is voting on. You can help by calling or emailing your senator and asking them to co-sponsor the Lyme and Tick-Borne Disease Prevention, Education and Research Act (S. 1503) with Sen. Blumenthal (the link has all the information you need and a way to send an email).

 

New Goals for the Blog

If you’ve visited me recently at gotlyme.wordpress.com you may have noticed that we have a bit of a new look (and that we can now also be found at pghlyme.org). This blog was slowing down, and I made the decision to help revitalize it by joining its effort with that of the Pittsburgh Lyme Support Group, something I hope will be mutually beneficial.

The PghLyme Support group is trying to get a strong support network off the ground in Pittsburgh, and we’ve made this blog it’s front page. As part of that effort, we’ve also added a new author, Pittsburgh Lyme Support Group founder Bill Moore. He is listed on the contact page, and has written about his Lyme Story. Bill also founded the pghlyme facebook group, and I am very excited to have him collaborate on this blog. I hope you will enjoy his contributions as well.

 

 

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, Lymedisease.org, 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.

 

Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

Re-Post: Ask your senators to co-sponsor Lyme disease bill (S. 1503)

Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503).

(from LymeDisease.org)

This is a NATIONAL bill, folks, which means it potentially subsumes the need to pass these on a state by state basis and has a big impact. It would help countless people if passed. We need you to help support this bill by sending a letter to your senator! It won’t take long, please do it because numbers matter. The more that our state senators see how many people in how many states care about this, the bigger the chance it passes. If you are reading this, you have been touched by Lyme in some way. Please help.

Life without major relapses

It’s been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured?  Continue reading “Life without major relapses”

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.