links, research, thoughts

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.

links, research

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


The four stages of relapse

I’ve decided it’s time for an (admittedly tongue in cheek) exploration of my emotional reaction to relapse. Tongue in cheek not only because I’m comparing to a very well known model normally called “The five stages of grief” but also because the evidence suggests that that model is a poor representation of what really happens to people suffering from grief (as described in this news article which explores grief across cultures and a book by psychologist George Bonanno who has studied grief, its heterogeneity, and successful coping with grief extensively). So with those caveats in mind, here’s my version:

First off, I am pretty much always experiencing two things at once. Secondly, my order is different.

Denial + Acceptance

I seem to be a master of Cognitive dissonance at the start: Big voice in my head: These initial symptoms will not be a relapse. They WILL NOT BE  A RELAPSE. I will repeat that as often as necessary. Small voice in my head: I’m probably going to have a relapse, but it will be short and I’ll move on. What I say to others: I’m feeling fine. What I tell my husband: I’m having night sweats (or whatever other symptom) so be warned. Hopefully it’s nothing.

Bargaining + Creating A Solution

I go into research mode. My pattern is the same but the outcome is different each time. I come up with some “solution” that will make things better, research the wazoo out of it, start down that road, and if I’m lucky drop it completely because the relapse ends. For example, last time around I researched disability accommodations, this time around I researched canes and low dose naltrexone. The fact that I got to two things (and executed on them both) is probably a hint that this relapse has been longer/worse than usual. This comes with a fair dose of optimism: whatever I come up with, I’m convinced will help. In the case of my new treatment idea, I was stubbornly applying the placebo effect along with hoping it would work for the first four days I took it. On day 5 I could not ignore the symptoms that were coming back, but I’m still going for the placebo effect — though I’ve never experienced one before I’m going to believe this is a herx!

Anger + Self Doubt

I’m currently in the “I want to throw things (if only I had the strength to)” stage. Actually, I do have the strength to sometimes, but at those times I’m neither angry nor depressed so I don’t want to then. It’s when I wake up from a nap and my arms are too weak to even use my cane easily that I want to throw something. This is about when I also allow myself to start wondering if I’m not going to get better, should investigate other diagnosis, and whether I’m contributing enough at work to be useful there, whether I should just stay home and give my kids what they need, and why no one asked me to review any UIST papers or sit on any proposal committees this year.

This doubting is a bit ridiculous considering I am on a program committee and an NSF panel this spring as a reviewer, submitted 8 papers just this Spring (7 to top tier conferences), am co-advising 6 PhD students, teaching a class, helping with the hiring committee and tenure review, and spending plenty of time with my kids. I needed to say (and read) that so forgive me for the self-indulgence. But doubt I do nonetheless. It’s true that at home long walks are limited to when the dog and I both want them, I have lots of kid time, and I can use my energy as much or as little as I want, sleep when I want, play when I want, work when I want. It is so much easier that way, and perhaps that’s the most legitimate reason I phantasize about “just stopping”. On the other hand, at work I am valued for my mind (especially useful to feel and know that when the brain is sometimes fuzzy or difficult), and I contribute in a totally different way than at home. Work may be hard at times but sitting at home feeling sorry for myself while the kids are at school (worst case) would be far harder.

Recovery + Change

I have to believe it will end with recovery, as it always has in the past. A day will come when I get back on my bike, put my cane away and can just be myself again. Or maybe a day will come when I am comfortable in my new skin. But I’m betting on the first outcome. It may make it harder day to day since I don’t truly accept what’s happening to me, but it gives me hope for the future. Besides I get to experience “recovery” almost daily for a few hours here and there. And I am becoming more comfortable using my cane. I don’t use it at home — that’s a space to be myself, relax. But at work, instead of worrying about the attention it attracts I feel the positive energy and support it brings me.

A Good Remedy: Patience + Faith

So where does this all leave me? It seems like forever, but this all started getting bad only at the beginning of March. So I’m a month and a half in, looking at an international trip in a few weeks, realistically this could last 3 months given that travel. Not terrible compared to other relapses, not great either. What I need instead of all of the other things listed above is one simple item: patience. I need to persevere through this as through all the others and wait it out. And I need to keep the faith that this too will pass.

links, research, treatment

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”

research, thoughts

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?”

research, thoughts

Patient Stories

I’ve mentioned once or twice on this blog that I’m starting to do research in Lyme disease. I had presented very early versions of this work at ILADS 2009 (in an open forum) but Sunday was my first opportunity to present it formally, in the context of a research workshop called the Workshop on Interactive Systems in Healthcare (WISH 2010).

The work I presented was based on a survey of 128 individuals with Lyme disease, from across the country, along with interviews with 21 of those people. We have far more to say about the data than I can fit here, or in the summary paper and slides we presented. But what differentiated this work from much of the other work presented at WISH was its focus on the patient viewpoint, the patient use of data, and how we can facilitate that. A lot of related studies seem to focus on a broken patient process or simply about doctors.

Continue reading “Patient Stories”