activism, research

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?”


IDSA fails the test

Editorial note: I posted the content below but forgot to discuss the implications. Here goes: The restrictive guidelines for diagnosis and treatment of Lyme disease published by the IDSA (Infectious Disease Society of America)  have caused some doctors and insurance companies to restrict the treatment options available to patients. There is enough evidence that these guidelines are biased that the IDSA was prosecuted by the Attorney General of CT (a lyme-endemic state) on an anti-trust basis. In the end, they settled out of court and held hearings to reconsider the guidelines. As I explain below, the hearings did not lead to any major changes in the guidelines. This is bad news for Lyme patients. However, the hearing process itself was flawed and biased. Luckily, there is one crucial thing the hearing panel disagreed on — whether or not a Lyme diagnosis can be made clinically, even without clear test results. Since the tests are flawed, this would represent an important change for Lyme patients. It could help reduce the number of people who are diagnosed late and thus develop chronic Lyme, and allow those who’s Lyme is already chronic to be counted, get treated, and so on. As described below, even with regard to this issue, the panel recommended no immediate changes to the guidelines. However, it is still possible that the Attorney General will be able to push the IDSA in the right direction, and that at least that change will be made. Now back to my original post:

The IDSA posted its final report based on the hearings held last fall (videos available until about 1/2011). The report concludes that no changes are necessary to the current guidelines, though small modifications are suggestion on the next revision. This report, and the process that generated it, are currently being reviewed by the office of the Attorney General. I will be following the details on Lyme Policy Wonk as they unfold.

In the meantime, here are some flagrant examples of how entrenched the IDSA is: Continue reading “IDSA fails the test”


Three explanations for my symptoms

I have tried to reserve judgment, not taken sides. But there is no question that I sit here, 4.5 months after the end of my antibiotic treatment, and I am still symptomatic. What’s more, I believe that my symptoms are, in the majority, caused by lyme and not something else. Certainly my body was taxed by the last year of illness, and there is no question that I may have secondary conditions, but I do not believe that the majority of my symptoms are caused by a coincidental concurrent illness. This is purely my gut speaking — for example, I *know* that I had a mold problem in the house at the same time I started to be sick. In principle this could all be mold and not lyme. But I have trouble believing that.

Given that knowledge of myself, I need to start putting the puzzle pieces together to understand what is going on with my body, and what my treatment options are. Clearly the current treatment plan is not enough, though (aside from lyme) I am probably about as healthy as I could be. But to pick a treatment plan, I must first understand what is happening

So, there are three possible explanations for my current situation. The first, most popular among the traditional docs, is that I have not lyme but something else. As I said above, my subjective experience seems to bely this. The second, accepted by some docs on both sides of the divide, is that I have an immune system disease, in which my body is attacking itself unnecessarily. The third, considered most likely by the LLMDs (lyme literate M.D.s) is that I have some form of active lyme infection.

Let’s suppose the second (immune system causing my body to attack itself) is true. I am still trying to understand the disease mechanism for this, and I have not seen anyone write about how to treat in this case. I will probably write a separate post about this with more detail and hopefully a more correct explanation, once I’ve finished my research. For now, here’s my rough understanding. What could cause this possibility to occur? One belief I’ve seen expressed is that there could be residual proteins that trigger the immune system. The other belief is that the lyme bacteria may convert to its dormant form, and this could still trigger the immune system even though it doesn’t directly attack the body any more.

Let’s suppose the third (lyme is attacking my body) is true. One might expect the disease to progress (subjectively, I don’t think things have changed much for the worse or the better). But leaving that aside, this could be caused either by (1) some bacteria in the main form surviving by hiding out in a part of the body not easily reached by antibiotics (2) some bacteria converting to an intermediate, active form that antibiotics don’t attack well (3) some bacteria converting to a dormant form that antibiotics don’t attack well and then converting back to an active form. I haven’t seen any other explanations of this possibility yet, but even these three are important to differentiate as they have different implications for treatment.

What evidence exists for or against these explanations? I haven’t been keeping great track of all of this, though I plan to do a better job of documenting what I find. However, I know of work showing that the dormant form exists in mice [1], and indicating that it may be able to convert back to active in circumstances when the mouse’s immune system is compromised (haven’t tracked down the reference for this yet). There’s also a study with dogs showing that lyme can survive antibiotics [2]. Does this take place in humans as well? I’m currently working on the assumption that any of these explanations could be true (or more than one of them). I can test for an auto-immune disease and plan to do so. I can strengthen my immune system and search for secondary or concurrent illness. But I don’t know of a way to test for ongoing infection. Without definitive science or agreement among doctors, patients have to make their own decisions about this issue.

[1] Moody, K. D., Adams, R. L. , & Bathold, S. W. (2008). Effectiveness of antimicrobial treatment against Borrelia burgdorferi infection in mice. Journal of Antimicrobial Agents and Chemotherapy. 38(7):1567-1572. A news article about his research says “The bacteria that cause Lyme disease, the most common tick-borne illness in the United States, can linger in mouse tissues long after a full round of antibiotic treatment is completed, report researchers from the University of California, Davis” (

[2] Straubinger, R. K., Summers, B. A., Chang, Y.-F., & Appel, M. J. G. (1997). Persistence of Borriela burgdorferi in experimentally infected dogs after antibiotic treatment. Journal of Clinical Microbiology, 35(1):111-116

infection, my story

When it probably started: Demi’s got lyme disease, again

For those of you who don’t know me, Demi is my wonderful wonderful dog. She spends some of her time with my parents in NY, and the first time she had lyme disease, we think she got it there (in Spring 2006). We only found out she had it because she had a positive ELISA when we checked her for heart burn in August 2006. We treated her with about 1 month of oral antibiotics. She never had any symptoms.

About two months later, late on Wednesday night of 10/4/06, Demi suddenly lost the use of all four of her limbs around 11pm. I was asleep at the time (I have two young children who don’t sleep well, one who was still nursing, and was catching up), but I happened to wake up an hour or so later and my husband told me what had happened, I immediately headed out to the emergency vet.

They had no idea what might have caused it, and lyme was never mentioned, but several other probably deadly hypotheses were discussed. In any case, they put her on IV antibiotics, and sent me home around 3am. The next day, she was already able to move a little. I asked them if lyme was a possibility, and they thought it was unlikely. However, her improvement was so rapid that they began to agree it was a possibility that her summer lyme disease had not been successfully cured. I was able to bring her home not long after that, though she required support under her belly to help her walk. We put her on oral antibiotics again, in consultation with her regular vet, for 6 weeks. By 10/8/06 she was outwardly completely better, and no symptoms have recurred since then.

At the time, I believed that her infection had occurred the previous Spring when she was visiting my parents, that treatment had been unsuccessful, and that her October symptoms were likely from the original infection. I also thought, at the time, that lyme was not something one would get in inner-city Pittsburgh. With my current (12/2007) knowledge, I now believe that she was probably cured in August and was re-infected by a tick in Frick Park sometime in late September or October. For those of you who understand the lyme wars (see other posts on the topic by clicking on the tag “lyme-ware”), you’ll see that I essentially switched camps. Actually, my opinions on this are more subtle than that, I believe that both are possibilities, I just think in this case one explanation is more likely. If it’s true that she was reinfected, it seems plausible that I may have been infected at the same time. The timing certainly makes sense.