I've been hatching a bit of a scheme lately. I haven't taken any action on it yet, but I thought I'd put it out there at least, to get some feedback and to motivate me to take the next step. After being diagnosed with Lyme disease in April 2012, pretty much out of nowhere (my CFS started with mono almost 5 years ago and I have no memory of tick bites ever), I've been thinking maybe Lyme is more common in CFS than people think. Chronic Lyme symptoms are very very similar to CFS: fatigue, neurological problems, cognitive problems, joint/muscle pain, etc etc. It's a disease that presents with very heterogeneous symptoms. My CFS doc says that 60-70% of his patients that come to him with CFS end up having Lyme, and Fibromyalgia has been linked to Lyme disease in his experience. Even if the numbers are not as high as that and only even 10-20%, isn't it still worthwhile to find out exactly what is and isn't afflicting us?
Herein lies the problem: finding out. The problem with testing for Lyme is that the widely used tests are indirect (ELISA and Western blot) and come up with many false positives and, more importantly, false negatives. As I understand it, the longer the person is out of the acute/early stage of infection, the less likely you are to come up positive on the indirect tests, especially the ELISA since it measures antibodies and if your immune system is shot to hell you won't be producing many antibodies for Lyme. But, there is a new test that's come out in the last few years that is more direct. It's a blood culture that actually grows the Lyme bacteria. It takes 3 months and, unfortunately, costs $600 (yikes). It hasn't been validated yet by an independent source, unfortunately, which does seem a little sketchy so I'll probably wait until that's done to hatch my plan.
That said, here is my idea. Well, 2 ideas
Contact the lab ( Advanced Laboratory Services ) that does the Lyme tests and see if they'd be willing to add CFS questionnaires to their future research project (described in my post here ). Somehow I don't think this will pan out but I can try.
This, really, is my big idea. There are many websites out there that do crowd funding (raising money from the internet goers at large), especially for charity work (see here for examples). I would like to get in contact with someone from a CFS/ME non-profit in the US (since the lab only currently tests in the US) and join forces with them (because why would anyone listen to little ol' me). Then, we can start a research project to be funded on one of those websites, and have individuals with CFS submit detailed questionnaires and medical history (if that's legally allowed) and get tested for Lyme disease.
There will be a lot of questions that arise from the crowd funding project, I'm sure. Who gets selected and how, how many people, etc. And to make this a real research project, you'd need a "control group": a group of healthy individuals who also get tested for Lyme. There probably won't be enough money for that too unfortunately.
The goals for me are two-fold: 1) do a research study to see if Lyme really is prevalent in the CFS community, and 2) just get as many people tested as possible because it's so damn expensive. Two birds, one stone. And maybe, just maybe, if the results are interesting, it'll get some attention. And then someone else with actual money might take this on. I'm geared up for a revolution here ;)
If anyone has any thoughts or suggestions about this, or even connections at a non-profit who could chat with me and potentially get involved, that would be great. Thanks all if you made it through this incredibly long post :)