Fortunately, there's a significant placebo effect for nearly any treatment from a doctor, so even when doctors make guesses it often ends up helping.
Especially with this new disease that was just discovered in New York State last year, you get it within 15 minutes (unlike Lyme which allegedly takes 24 hours) and it has a 30% chance of killing you. The members of my local mycology group are getting absolutely dropped by these things... One of our members almost died a couple months ago after having the white blood cell count of an end stage AIDS patient. It's almost suicidal to go into the woods without pants stuffed into your socks, a long sleeve shirt tucked into your pants, and all your clothes treated with permethrin. I've even started wearing boxer briefs just to keep them out of there at least.
Sadly, doesn't work. I've found two attached under the elastic band. Maybe they like the heat?
ILADS integrity roughly equivalent to an anti-vaccine organization. Pseudo-science, misinformation, lots of hand-waving, and immediate dismissal of any data that doesn't fit their preconceptions.
The CDC is a flawed bureaucracy, but at least there's the hope that once more empirical medical research has established better treatments they'll base their approach on that. ILADS will be telling people to eat weird diets and use magical treatments for a few decades after a fully effective treatment is out there.
Whereas on the patient advocacy side, if you look at their (ILADS) reports, many of the footnotes go to random people's blogs, and if you follow the footnote trail long enough it just ends up where many of their recommendations basically just originate with random people making up shit.