This.LHCTom wrote: Ok - Successful cultures are the reference basis for most existing Lyme tests. On one hand its the reference standard for calculating the sensitivity and specificity by establishing a 100% proven positive but too slow and contamination prone to be useful. Doesn't that mean all culture proven tests must be bogus since contamination is unavoidable. And far too slow to compete with ticks sucking blood under bandages. So its worth going through all the trouble of xenodiagnosis and inventing clever bandages but not trying to advance the culture after more than a decade of stagnation due to bad attitudes and lack of imagination.
If they would get off their butts and do things like help, maybe the empiric treatments wouldn't be necessary. Lets not forget the doctors, researchers, CDC, NIH and FDA have responsibility to resolve what is going on so they are partly responsible for these treatments. If they bothered to get out of their offices and looked out into the real clinical world at real ill patients, maybe they would realize they carry some responsibility. They cannot sit back in their cozy offices collecting their big salaries and patent rights and complain about doctors in the field trying to help and wash their hands of the responsibility while writing JCM editorials.
I'm writing about this here rather than the FDA test validation thread because I'm diverging a fair amount from that topic and going down a side alley. But it's a big important alley.
A valid culture - even if it takes a long time - would be a very useful test to confirm that someone is currently infected and needs treatment. As it is, many people who experience Lyme disease symptoms didn't realize they were infected earlier on and go from doctor to doctor for months if not years to figure out what's wrong with them. If a culture test takes weeks or even a couple months, but gives someone a clear answer as to what's ailing them (at least in part) then for many it would be well worth it.
That said, an astute doctor should be able to look at a patient's symptoms and figure out what is wrong if they do the detective work. The signs of Lyme disease at a later stage should be considered in a differential diagnosis - especially when other conditions have already been ruled out and the remaining data seems to fit.
Before anyone was relying on a culture, patients were still being diagnosed with Lyme disease and treated. And even today, many patients are not getting the culture done because they simply can't afford it, and when asked, will say that they already know they have Lyme disease and they need the money for treatment - why get a test that already confirms what they and their doctor already know? Others, of course, will get the culture in hopes of it being more data to support their diagnosis.
I think personally though that what's more important than the test or textbook diagnostic criteria one has to meet is the treatment, though, and that's where more research money needs to go. We already have patients we strongly suspect of having Lyme disease using their clinical history and existing tests and rule-outs. And these patients have persisting symptoms after initial standard antibiotic treatment. Clearly that trick doesn't work, and what's up anyone else's sleeve?
All of those who decided to protest back in October, in my opinion, need to focus on this fact. The parties who need to be petitioned are broad. And specific treatment milestones need to be petitioned for. As it stands, we've been sitting on many years of stalemate and no real forward movement. How is this going to change? Where should everyone's efforts be directed?LHCTom wrote: Lets not forget the doctors, researchers, CDC, NIH and FDA have responsibility to resolve what is going on so they are partly responsible for these treatments.