People started becoming aware of Lyme disease (not Lyme's disease) around the late 1980's to early 1990's. In the ensuing decades, physicians have engaged in a constant battle over what constitutes appropriate methods of evaluation, diagnosis and treatment of Lyme disease and other tick borne disorders (i.e. Babesiosis, Ehrlichiosis, Bartonella). Conservative doctors affiliated with major institutions of learning who control the editorial boards of major medical publications went out of their way to file complaints with state regulatory agencies against what they called a "cottage industry" of private physicians who were treating large numbers of patients for Lyme disease.
In New York, the Office of Professional Medical Conduct (OPMC) started pulling patient files from doctors and conducted hearings to determine if doctors were improperly diagnosing and over-treating Lyme disease. Some of the conservative doctors who anonymously complained to the regulatory agencies were also being paid as consultants by insurance companies who were spending large sums of money for the intravenous (parenteral) treatment of Lyme Patients ($10,000 or more per month). Those doctors helped some insurers to rewrite their corporate medical guidelines, making it more difficult to qualify for IV care. They knew that some of the patients truly needed the treatment, but in an effort to boost profits, denied authorization for IV treatment (I possess the sworn video testimony of a former Chief Medical Officer for one prominent health insurer who testified this happened).
Some of the private physicians were disciplined while others tried to fight back, forming the International Lyme And Associated Diseases Society (ILADS), a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS developed treatment guidelines that are invaluable for many physicians who only know what they were taught by conservative doctors who to this day still think: Lyme disease is overly diagnosed and overly treated; that a 3-4 week course of oral antibiotics is all that is needed in the vast majority of cases to cure the disease; that no more than one 30-day course of IV antibiotics is needed if a patient has the Lyme bacteria in their central nervous system (neuroborreliosis); that there is no such thing as "chronic Lyme disease."
Over the years, I've litigated numerous different kinds of Lyme disease related matters including, but not limited to: medical malpractice cases for failure to diagnose and treat Lyme Disease; breach of contract for refusing to pay for IV treatment for Lyme disease; breach of disability contracts for cutting off sick people who had organic changes in their brains due to active infection and were told by the insurance company that they just had "psychiatric problems" for which only 24 months of benefits were available under the disability contract; negligent exposure of employees working on interstate railroads to areas endemic to ticks that were infected with the Lyme causing bacteria (borrelia Burgdorferi) without providing educational material and tick spray; negligent exposure of hotel guests and children at camps to areas endemic to ticks without providing information about the risk to guests and parents of campers.
One of the basic problems I've encountered when suing health insurance companies is that most insurance policies are ERISA (Employee Retirement Income Security Act) plans. When an ERISA plan denies a benefit, under the ERISA law you can only succeed in a lawsuit to compel the insurer to pay for the benefit if you can show the plan was "arbitrary and capricious" in issuing its denial. The problem is that there are two sides to the argument, the conservative doctors and the doctors who are more aggressive in diagnosis and treatment. If each side to the litigation brings in an "expert" and they give differing opinions about what constitutes appropriate diagnosis and treatment, the patient will lose the lawsuit because they have the burden of showing they are right rather than that their treating doctor represents one side of the argument.
Unfortunately, little has changed after several decades in the field of Lyme disease and other tick borne disorders. We still do not have a "gold standard" test that definitively proves someone has Lyme disease. The Center for Disease Control (CDC) surveillance criteria for Lyme disease says that a classic Lyme rash, by itself, requires the diagnosis and treatment of Lyme disease. However, many patients never develop the immune response that creates that classic rash. Many doctors remain afraid to diagnose and treat Lyme disease for fear they may become the victim of a governmental agency witch hunt.
In Connecticut, a law was passed some years ago that requires health insurers to pay for the expensive IV treatment if doctors in 2 out of 3 specified areas of medical practice diagnose the condition and recommend the treatment. Unfortunately, that law doesn't exist in neighboring states that also are endemic for Lyme disease. In the end, it's all about the money. If money is not there for research, the gold standard test will not be found and more efficacious medical treatments will not be developed. Over the years, there have been a few friends in Washington, D.C. (i.e. Sen. Lieberman, Sen. Kennedy) who were important friends of Lyme research. But, in a weak economy, funding disappears for many things, not just Lyme disease.
The law can be a great equalizer. However, the legal profession can't get the job done without the science to support a lawsuit. There are different tactics that I have successfully used to work around some of these problems. The underlying problem remains that much more research is needed.