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Monday, February 9, 2009

Lyme tests: Truth and Consequences

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?


dogdoc said...

Since when are fibromyalgia, depression, and hypochrondriosis antibiotic responsive disease? Seems I missed that part of the CDC's and good ole' Gary's explanation. Oh yeah... but he and his colleagues have only seen 7 chronic cases collectively with typical stocking glove neuropathy with long tract/vibratory sensations affected, major joints esp knees affected, and "minor" cognitive dysfunction. Including me, I know more than 7 patients with these signs that have responded to antibiotics and whose neuropathies, arthropathies, and other cognitive issues have resolved. Perhaps our experts need some new training? They seem to be inept at finding what is in front of their faces.

Lyme report: Montgomery County, MD said...

I know more than 500- actually I have lost track of the number.
I read the same stuff in the IDSA guidelines. The panel, I believe, had seen 5 cases of stocking glove neuropathy over a several year span of time. I see about 3 such patients every single day.

The "good news" it that the new panel will have seen zero patient with these findings since all doctors who actually treat Lyme disease have been excluded.

Unknown said...

One of the explanations Drs. give as a reason why people who are sick but they can't find bacterial infections in respond to antibiotics is that antibiotics have "anti-inflamitory" properties. I am asking, since I'm not a doctor, how strong are these properties, and how do they typically manifest? Is the "anti-inflamitory" effect of say Doxy or Zithrmax profound enough to have symptom reduction? If you took someone with an inflamitory condition that wasn't caused by bacteria (ie a viral infection, or some sort of physical or mental stress), and gave them one of these drugs, would they have the same symptom reductions? My gut says no - I have a bacterial infection.

My personal experience is that my symptoms didn't improve on cortisone (in fact my pain got transiently worse), but they did on Zithromax (not so much on Doxy). Since I'm negative for Lyme, my Dr. says it must be cause "Zithromax blocks cytokines". But is that was the case, wouldn't I have also felt better on the cortisol?

Lyme report: Montgomery County, MD said...

Cytokines are produced when the immune responses are activated. A primary trigger of these responses is bacterial infection.
All antibiotics may effect cytokine expression. You are correct. Steroids decrease cytokines to a much greater extent than antibiotics. If you read my blog I think you will find more answers.

Pseudonymity said...

LymeMD wrote:

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.

I would like to respectfully suggest that there may be a third position, in which neither side has the full picture. Lyme is really the first widespread, non-fulminant infectious disease to come to the forefront in many years. TB and Syphillis were known states prior to antibiotics, DNA sequencing, etc. 30 years into the microbiological study of the borrelia organisms, and questions are still developing quicker than answers, with more questions every day. Just how many sub-acute, chronic infectious diseases are still out there, waiting for the agent to be identified? The fact that Clongen can not get a 16S rRNA sequence on the unknown agent is just more questions - maybe both IDSA and ILADS docs alone are treating more agents than they know.

I just get the feeling that auto-immunity is less of a disease cause then is routinely assumed - I think a century from now Borrelia will be known as the first discovery of the infectious agents that cause chronic debilitating or fatal diseases.

I do not like where that train of thought leads, but my experience with Lyme leads me to believe there are more agents out there, and we can not see, test or possibly even treat them.

dogdoc said...

That is a very good point. We are treating antibiotic responsive disease recognized as a clinical syndrome of signs. The disease could easily be the bodies reaction to chronic infection by any type of organism capable of persisting.

Lyme report: Montgomery County, MD said...

Most LLMDS believe they are treating a collection of bacteria.

A group of patients with nearly identical symptoms is being treated for Chlamydia pneumonia under the Stratton protocol.

Other focus on the significance of Mycoplasma fermentans and other related organisms.

?Bartonella and others.

Another group of similar patients are treated for viral infections, EBV,CMV and HHV6 with the antiviral drug Valcyte.

The difference between the IDSA and ILADS is no less polarized.
One side completely discounts the contribution of chronic infection towards the pathogenesis of chronic illness, AND feels so strongly about this position, that their goal is to keep physicians who disagree with them from practicing medicien.