Over the weekend, I had the privilege of attending the LDA and ILADS sponsored conferences on Lyme Disease. I left Pittsburgh worried that I would find the three days of talks I planned to intend incomprehensible, boring, or simply overwhelming. I returned having soaked up hour after hour of information. The material engaged me in so many ways. As a person with Lyme Disease I found myself learning to understand my own condition, hearing about how doctors actually make treatment decisions, discovering with scientists new knowledge and promising possibilities for tackling the beast inside me. As a researcher studying Lyme disease I was delighted to discover other social scientists studying its effects in the schools and in the workplace, and to make contact with possible collaborators in the activist and scientific communities. Perhaps most surprising was the power I felt from being in a room full of other people who all understood, cared about, and had been forever changed by their encounters with Lyme Disease.
A room full of people who care about Lyme disease
October 28, 2009 at 9:09 pm (research)
Tags: activism, doctors, thoughts
New hope for Chronic Fatigue patients
October 12, 2009 at 9:29 am (research, thoughts)
Tags: activism, lyme-wars, resources, thoughts
When you live in the nether world of questioned diagnosis, you spend a lot of time wondering if perhaps those doctors who say the problem is in your head, your lifestyle, and your diet are right. In my case, I was lucky to have a variable enough illness that I was constantly reminded that I was not the cause — as soon as I felt better I did more, no matter how short a time it lasted. I never had to think about it, plan it, or convince myself to do so, I just DID.
Lyme disease patients at least have the existence of a known pathogen to hold onto when they fight the external discrimination, and associated internal questioning, that characterizes their disease. For those with Myalgic Encephalomyelitis (known popularly as Chronic Fatigue Syndrome), until this week, that did not exist. On October 8th, the journal Science published an article by Lombardi et al. titled “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” (also see this discussion by the author of Osler’s Web). Pamela Weintraub, in her blog Emerging Diseases reflects on the continued efforts of physicians and researchers to label diseases like Lyme disease and Myalgic Encephalomyelitis (ME) as pyschiatric illnesses. This is a form of discrimination and institutionalized myopia that has systemic negative affects on patients. It stifles research, reduces access to treatment, and forces patients who are already fighting a difficult disease to also fight for respect. Perhaps worst of all, they must devote mental and physical energy to all of this, while simultaneously fighting the internal battles necessary to keep believing in themselves despite a lack of definitive anything and constant encounters with naysayers. Read the rest of this entry »
Sexual transmission of Lyme Disease
August 13, 2009 at 7:08 pm (infection, research)
Tags: venereal sexual transmission
I’ve been wondering on and off for some time whether I need to worry about sexual transmission of Lyme disease. Now I’ll be honest, although I love my spouse very much, it hasn’t been that much of an issue in the last year or two. But I’m starting to feel a little better, and the last thing I want to do is create a husband who can’t get off the couch just when I’m able to enjoy him.
Humor aside, I decided to do a literature review for myself on the issue. Not being an expert in this field, I am trying very hard to avoid much interpretation these results, but here’s a raw dump of what I found (note: Bb, and Borrelia Burgdorferi both refer to the causative agent of Lyme disease, the spirochete Borrelia Burgdorferi and (in some cases) related strains that also cause Lyme disease). Read the rest of this entry »
Hearing talks now available online
August 5, 2009 at 7:42 am (research, treatments)
Tags: lyme-wars
Quick update to my previous post: you can now view a video archive of the IDSA hearings online here: http://webcast.you-niversity.com/idsaArchives/
Landmark hearing with excellent talks
July 31, 2009 at 9:36 pm (research, thoughts)
Yesterday was a landmark day for the Lyme community: An opportunity to try to sway the Infectious Disease Society of America (IDSA) toward a more generous description of Lyme disease and its treatment. The IDSA guidelines are curretnly used to guide the treatment decisions of many doctors from specialists (especially Infection Disease doctors) to family physicians. Insurance companies also sometimes use these guidelines to determine whether to pay for treatment. “Lyme Literate” doctors (termed LLMDs) and groups such as the International Lyme and Associated Diseases Society (ILADS) oppose these guidelines, and it gets pretty nasty at times. I’ve termed this the “lyme wars” in this blog and have a page full of links that illustrate both sides of the issue. Much of my first year with lyme disease was spent trying to figure out what to believe in the face of passionate researchers from both sides writing articles that argue for each perspective, passionate doctors from both sides telling me not to believe the other side, and passionate organizations from both sides fighting to teach patients and doctors alike what to believe so that they will not be mistreated.
I’m giving a talk …
April 27, 2009 at 7:13 am (research)
Tags: internet research
Having Lyme Disease has been a life changing experience for me, something I am sure I am not alone in. For me, this has meant many personal changes such as doing a better job of prioritizing those things that are central to my quality of life regardless of how I feel, managing stress, and sleeping more. It has also meant changes at work — specifically, I have begun to think about how I can leverage my work to improve our understanding of Lyme Disease. Now, I am not a doctor or microbioligist, so I cannot easily contribute some of the things I most wish for — research into the lifecycle of this disease, the best ways to kill it and so on. But as technologist, there are things I can contribute to understanding and supporting the patient experience.
My work in this area is just beginning, and has been facilitated by some of the readers of this blog (thank you!). I have been given the opportunity to talk about some of what we are doing. I am going to be speaking at the Greater New York Lyme Neuroborreliosis Support Group on Saturday, May 2nd, at 12:00. The location is the NYU Langone Medical Center, NY, Auditorium B 550 First Avenue, New York NY.
