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.


Lyme disease cases skyrocket [in Pittsburgh]

Lyme disease cases skyrocket [in Pittsburgh]

Thank goodness the press is paying some attention (again) to what’s going on with Lyme disease in the area. Maybe it will help one or two more people think twice before they dismiss unusual symptoms. If only the reporter had also talked about how to prevent tick bites, or mentioned the fact that not all treatments are equal.


Evidence for Erlichiosis transfer by Blood Transfusions

Evidence for Erlichiosis transfer by Blood Transfusions

“A 9-year-old Georgia boy who developed a rare tick-borne disease got the infection from a blood transfusion, according to a report of his case.

The case is the first time this infection, called ehrlichiosis, was spread by a transfusion, said Dr. Joanna Regan of the Centers for Disease Control and Prevention.”


Raising Awareness

I have to admit … there is a reason I don’t post as often: my motivation for posting on this blog for many years was the need to tell my story, reflect on my experiences, and (hopefully) help others in the process. As I’ve gotten better, the urge to post has gone down (aside from the obvious continual relapses, worries about my kids, my dog, and so on), and I think it’s likely to stay that way until I begin to find a new role, and a new reason to share.  Right now, that reason is raising awareness in my local community and more broadly.

In recent weeks, I’ve had the unusual experience of working closely with a reporter to tell both my own story and that of my research. The results can be found in two articles ([about my research] and [about me]). The goal was to spread the word to folks in Pittsburgh that Lyme is here and spreading, and to watch out for ticks.

I’ve never done something like this before, told my story in such a public forum, and given someone else control over the words used, the supporting (or debunking materials), the photos, every aspect of how I was presented. Despite that, having written a blog gave me a feeling of familiarity. Little did I know how different it would be: The readers of this article, the folks who have contacted me, include almost everyone I know in my personal life, many of whom I have never spoken to about my Lyme disease.  Continue reading “Raising Awareness”


Repost: Thanksgiving in the Lyme World

For those of you not on the CALDA (California Lyme Disease Association) mailing list, I wanted to share the message they just sent me. I joined their list because they are extremely well organized and I often keep an eye on their site because it’s full of great information. It’s inspiring to me to see how many things folks in the Lyme world are accomplishing. Here’s their message:

Scientists sequence Lyme disease genomes

Researchers have determined the complete genetic blueprints for 13 different strains of Borrelia burgdorferi, the bacteria that cause Lyme disease. The wealth of new genetic data should help scientists develop improved ways to diagnose, treat and prevent Lyme disease. Click here to read more about it.

2010 CALDA Lymewalks raise research funds, awareness

San Francisco, Sacramento, Los Angeles, San Diego, Ukiah and Humboldt County were the sites of six CALDA Lymewalks held in September and October. In addition to increasing public visibility of Lyme disease and collecting funds for research, the events became Lyme community-building events as well.

Lyme-TAP program offers financial help to patients in need

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Rotary Club of Ferndale Foundation in coordination with Humboldt Lyme Awareness Group. It can provide reimbursement for up to 75% of the cost of diagnostic testing for tick-borne diseases. Click here for more information.

Massachusetts passes Lyme doctor protections

Governor Duval Patrick posed for this photo with Lyme activists after signing the 2011 Massachusetts state budget, which included an amendment to protect physicians who give long-term treatment for Lyme disease.

Increased media coverage of Lyme disease

Maine television station WSCH6 ran a 4-part series on chronic Lyme last summer. New Hampshire public TV station WMUR devoted a one-hour special to the subject. Almost every day, articles about Lyme disease appear on TV, radio, newspapers, magazines and on the internet. Many of these articles come about because Lyme patients contact media outlets suggesting coverage. Keep up the good work!

More in-roads into medical journals

CALDA board members Raphael Stricker, MD, and attorney Lorraine Johnson have co-authored some 30 Lyme-related articles which have been accepted for publication in professional medical journals. Their most recent one, published in Philosophy, Ethics, and Humanities in Medicine is the third most accessed article for all time in that journal, with over 10,000 hits.

Restructure of IOM hearing and the Congressional Record

After CALDA and other patient groups pulled out of an Institute of Medicine Lyme disease workshop to highlight a highly biased process, the IOM restructured the session to be less biased. With the help of Congressman Chris Smith (NJ), we entered our “state of the science” report into the Congressional Record.  Click here to read it.

Increased Lyme activism

Becoming informed and staying connected are critically important for members of the Lyme community. More patients than ever are helping themselves and each other by joining CALDA’s network of on-line state Lyme support groups. And they are keeping abreast of Lyme-related news via the Lyme Times, as well as CALDA’s blogs, Facebook page and Twitter.