In case you missed it, Johns Hopkins launched the first major US medical center to study Lyme Disease! As I learn more about this center through the article and the center's website, I find myself evaluating the center against the following truths that I realize based on my recent experience working through Lyme Disease and other tick-borne diseases.
(1) Lyme Disease is one of several diseases that are transmitted by ticks in the mid-Atlantic region. These nasty little bugs can transmit Lyme Disease, Ehrlichiosis, Anaplasmosis, tick-borne encephalitis, and Babesiosis. None of these is a good time and at least one can be fatal, and furthermore, a single tick bite can cause several of these all at once!
(2) Tick-borne diseases can be very difficult to diagnose.
(3) Tick-borne diseases can be very difficult to treat.
(4) Many medical professionals refer to Lyme Disease symptoms that persist after 2-4 weeks of treatment per CDC guidelines as "post-treatment Lyme Disease syndrome". Keep in mind that if any of the tick-borne diseases are indeed present after treatment, it can be difficult or impossible for a medical professional to distinguish those from "post-treatment Lyme Disease syndrome". In a nutshell, this diagnosis is the way many medical professionals reject patients who need continued help.
Before going further, I feel compelled to clarify that I have not worked with anyone affiliated with the medical center - they are not Dr Lyme#[1,2,3]. That said, here's what I think.
On one hand, I'm glad that the pursuit of understanding Lyme Disease is becoming a priority and that significant funding is available. It should be a good thing to some degree for the Maryland economy, too. And I love Maryland.
On the other hand...
The center deals only with Lyme Disease. Those other tick-borne diseases will not be covered apparently. I understand that Lyme Disease is the higher priority, but I am disheartened because there is no mention of tackling these other diseases at all.
With its initial grant, the center will gather information about the impact of Lyme Disease on the immune system and the causes of "post-treatment Lyme Disease syndrome". I find this approach disheartening very much because it does not prioritize the major problems with both diagnosis and treatment for suffering patients. Also, I am somewhat disheartened to learn that such analysis is not already available, at least from a major US medical center. <sigh>
The center promotes the "post-treatment Lyme Disease syndrome" paradigm and it does not perform "treatment studies" even for those with the controversial diagnosis. So yes, for me, a medical center that is geared toward Lyme Disease research but does not perform treatment beyond CDC guidelines - as research - is disheartening.
The leader of the center states that "post-treatment Lyme Disease syndrome" is not fatal - I just don't know how such a statement could be made at all in the first place. The statement promotes a false certainty in a problem space that is not completely understood right now, hence the need for research at the center. The statement implies a limit to the patient pool - that only those with the controversial "post-treatment Lyme Disease syndrome" diagnosis are considered, while those without the diagnosis are excluded. Anyway, the timing... making such a controversial statement while announcing the initial grant, well, at best that doesn't seem to be a good idea.
And then I think a bit more about the publicity and how it will likely draw to the center people who are looking for medical help to resolve tick-borne diseases that do not resolve within guidelines in diagnosis and/or treatment for Lyme Disease, and I am disheartened at the experience that may await them there.
Hopefully, the research performed at the center will lead to addressing all manner of tick-borne diseases and the problems with diagnosis, treatment and "post-treatment Lyme Disease syndrome", but right now, it looks to me like that would take a very long time due to its other defined priorities.
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