The CDC seems to contradict itself quite a lot regarding this issue. One the one hand, it states that the two tier test is very accurate. On the other hand, it states that the two tier test is to be used for surveillance, and is not the basis for diagnosis. The CDC seems quite concerned that Lyme disease is over diagnosed. There are repeated comments that false positive tests are common. It is claimed that a lack of an IgG response following an initial IgM response is associated with false positivity. This is the opposite of what most LLMDS and their patients have found. In fact, the incidence of under diagnosis and seronegativity has been well documented. Dr. Wormser- closely affiliated with the CDC- has expressed concerns that Lyme disease has become a "wastebasket" for many patients. A preoccupation with first ruling out other disease entities like fibromyalgia is asserted.
There are inherent biases in the IDSA and ILADS positiion regarding Lyme diagnosis based on one's initial beliefs about the incidence of the infection. Seronegativity has been extensively documented, as outlined by Dr. Philips of ILADS. Given a bias that Lyme is under diagnosed, rather than over diagnosed, one views the diagnostic conundrums from a different starting point or bias. If one believes that Lyme, for example,may be a frequent underlying cause for the clinical entity called fibromyalgia-considered a clinical syndrome,not a disease, then one approaches testing from a different angle. The bias in making the diagnosis is based on a physician's sense of a "pretest" likelihood that a particular disease is present.
The first diagnostic tools are the history and physical examination. I believe that most papers, scientific and otherwise, which discuss Lyme diagnosis frequently underplay the significance of such data. I believe that historical data must be interpreted in a more narrow way than has been suggested by some authors. Common symptoms like fatigue, brain fog, numbness and tingling and migratory pains should be given a lot of weight. Symptom which are associated with numerous other entities should be given little weight.
To understand diagnostic tests, one must have an appreciation for the biological diversity of the Lyme organism, as it exists in living tissues. Lyme can be an extracellular bacteria, but intracellular and cyst forms of Borrelia burdorferi have clearly been shown to exist.
Antibody responses- acquired immune responses to intracellular bacteria are poor. The primary immune response here is mediated by T cells- the innate immune response. This must be taken into account in the understanding of seronegative disease.
Let us look at TB for example. Tuberculosis is an intracellular bacteria. There is no antibody test for it for the reason discussed above. A PPD skin test looks for a delayed hypersensitivity T cell response. A new FDA approved test is quite unique. Lymphocytes from a patient are incubated with TB antigens. Gamma interferon is measured. If a patient has had previous exposure to TB a Th1 immune response is provoked and the associated cytokine is released.
Newer diagnostic tests for Lyme have focused on its intracellular nature. One test, called a lymphocyte transfer test, measures lymphoctye reactivity after exposure to Lyme antigens. Another test measures cell mediated chemokine responses, as a signature of infection with a specific bacteria such as Lyme. The CDC has criticized such tests claiming that its two tier surveillance test remains the "gold standard," in the diagnosis of Lyme disease.
The CDC hangs much of what follows regarding Lyme disease- diagnosis and treatment based on testing procedures which are at least controversial. The CDC/IDSA cling steadfastly to the same tired positions, despite ample evidence that they may be incorrect. The CDC web pages about Lyme disease do not address the FACT that its positions are controversial and that other viewpoints are considered valid- based on the listing of ILADS guidelines with the National Clearing House of guidelines, held by the department of HHS.
What if even 10% if the ILADS position is correct? Can the IDSA and CDC afford the risk that they might be wrong about such a huge issue? What if there is in fact a raging epidemic of a super germ, with biological characteristics of both TB and syphilis, ravaging the population of the US and much of the world?
Doctors are taught that they must exclude potentially life threatening medical conditions when they evaluate a patient before more benign conditions are considered. Perhaps the CDC has it backwards. Perhaps physicians should be taught to rule out disseminated tertiary Lyme disease and neuroborreliosis, before considering fibromyalgia of benign cause, depression and hypochondriasis.
The issue is too important. There is no room for posturing, spinning, politics and egos.
We are left with two possibilities. Either LLMDS and their patients are suffering with mass delusions and hysteria- per the IDSA position, OR the mainstream of medicine is sitting on the sidelines while an epidemic of plague like proportions is disabling and at times killing many thousands of Americans.
If you don't like the message it can be convenient to kill the messenger. This has happened throughout history. In general, one of the best predictors of the future is the past. Can we really afford to let history repeat itself once more?