[dumbneurologist]

Your link makes my point perfectly: doctors are open-minded, and have conducted rigorous investigations using meaningful clinical endpoints, and cannot substantiate the anecdotal reports of improvement in spite of a very diligent search. It states:

  Posttreatment LD remains a poorly understood syndrome, 
  occurring in an estimated 10% to 20% of humans treated 
  under current IDSA guidelines.30 Multiple randomized, 
  placebo-controlled studies that evaluated sustained 
  antimicrobial therapy concluded that there is no benefit 
  in alleviating patients' symptoms and indicated that long-
  term antibiotic therapy may even be detrimental to 
  patients because of potential associated complications 
  (ie, catheter infection and/or clostridial colitis).31, 
  32, 33

Where the references are:

Berende, A., ter Hofstede, H.J., Vos, F.J., van Middendorp, H., Vogelaar, M.L., Tromp, M., van den Hoogen, F.H., Donders, A.R., Evers, A.W., and Kullberg, B.J. Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. N Engl J Med. 2016; 374: 1209–1220

Kaplan, R.F., Trevino, R.P., Johnson, G.M., Levy, L., Dornbush, R., Hu, L.T., Evans, J., Weinstein, A., Schmid, C.H., and Klempner, M.S. Cognitive function in post-treatment Lyme disease: do additional antibiotics help?. Neurology. 2003; 60: 1916–1922

Klempner, M.S., Hu, L.T., Evans, J., Schmid, C.H., Johnson, G.M., Trevino, R.P., Norton, D., Levy, L., Wall, D., McCall, J., Kosinski, M., and Weinstein, A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001; 345: 85–92

[GiorgioG]

I tracked down those studies and the treatments tested were from 30 days to 12 weeks - hardly what I would consider 'long term therapy' that's currently advocated/practiced by LLMDs.

I don't have any definitive answers. All I can tell you is, if you felt as lousy as I feel, you'd be willing to try it given the lack of any meaningful treatment options from the current mainstream medicine that has managed to extract a shitload of my money in exchange for mostly blank stares & shoulder shrugs (or my favorite, passing me onto another specialty, resulting in another 2 month wait.)

[dumbneurologist]

> the treatments tested were from 30 days to 12 weeks - hardly what I would consider 'long term therapy' that's currently advocated/practiced by LLMDs

ahh! there is something here. I't subtle but I think it's a really important process you've described:

Conventional medical experts took the anecdotes and lyme theories, and decided to test "long term" therapy that was being advocated by less-conventional but still well-meaning providers at the time. These were the results: they showed there was no benefit.

So conventional thinking moved on, and the now-fringe thinkers simply moved the goalposts. Any scientist is going to be open-minded about the possibility of something being effective, even if they don't understand it. But at this point there are far better places (meaning "likely to show efficacy") to invest research resources.

And the question we're all asking ourselves is: if the alt-medicine community is so convinced that there is a benefit, why on earth won't they perform a randomized, placebo-controlled, clinical trial. We already did several, and published them. If the alt-lyme community still wants to continue making claims and expect to be listened to, they are going to need evidence.

That seems like it should be uncontroversial to me, but here we are.