I don't have any personal experience to support or refute this description of how Lyme disease works and how its patients are being hurt by the medical and insurance systems, but it rings true. We know that there are Big Machines chewing up the Little Guy all over our society, and these seem to be some of the biggest mismatches.
[...] As you can tell by now, this issue is a political and medical snake pit. But the thing that I've found most striking about it is that Lyme patients aren't the only ones caught in it. You can find almost identical battles raging -- with insurers and "official" medical groups lined up on one side, and persecuted heretic doctors and their grateful patients lined up on the other -- among the MS, autism, chronic fatigue syndrome, and Gulf War syndrome communities. In fact, almost every chronic disease that's emerged or spread since the early 80s has ended up re-creating this exact split. You have to wonder: Why? What's going on here?
A few perspicacious science journalists think they've got an answer. The problem, they say, started back in 1980, when Ronald Reagan changed the rules governing how scientists (and the entities they work for) profit from their work. Where scientists used to gain fame and fortune by publishing and sharing their work in conferences and journals -- and were thus rewarded for furthering general knowledge -- the new rules encouraged them to hoard their discoveries as trade secrets; and then leverage their patents and their seats on medical boards to write the disease definitions, mandate approved treatments, and completely control the scientific discourse in order to maximize the profits they made.
The upshot -- in all these cases -- is that when a new disease is discovered, a small cadre of researchers rushes in to lock down the disease's definition, patent its treatment, and control the flow of information around it as soon as they can manage it. From that point, any further discussion of the issue is off-limits; and any new discoveries or treatments not controlled by this cadre are discouraged by means both subtle and brutal. So instead of ongoing scientific give-and-take that leads to increasingly better information and treatment over time, the entire research conversation stalls at a very early stage -- and can stay stalled for decades. In the meantime, patients and clinicians are shut out of the discussion and left to work out practical treatments and new theories on their own, often in defiance of well-funded opposition that's staked its careers and fortunes on preventing any challenges to their established theory. [...]