Testing and diagnosing Lyme disease is complex and easily misunderstood.
An Excerpt from “Treating Lyme Disease”
There are two primary types of Lyme disease, both are equally difficult to diagnose, especially if the doctor discounts them as a possibility. Acute Lyme patients will often have symptoms even after they test negative for Lyme. Most of the medical community considers these types of patients as “post-Lyme syndrome,” however this is actually chronic Lyme – learn more about common myths surrounding Lyme disease here. Chronic Lyme requires very specific testing to be diagnosed and most doctors do not run these tests. The complexity of testing for Lyme and the divide in the medical community on what is acute versus chronic Lyme cause many patients to not get the care they need.
Even when presenting with Lyme-related symptoms, doctors will often overlook Lyme as an option because Lyme has so many broad symptoms. Doctors will lean towards testing for other chronic conditions and diagnose the symptoms rather than the condition itself. Chronic Fatigue Syndrome and Fibromyalgia are two of the common misdiagnoses; patients are given antidepressants or told nothing can be done for them. The standard test for Lyme misses 90% of chronic cases, because a large percentage of Borrelia Burgdorferi strains do not appear on the traditional Lyme test. This is happening because the test is only designed to detect acute Lyme, which is leaving most people either never diagnosed or misdiagnosed.
Another major contribution to poor Lyme detection is the use of outdated testing techniques. The Center for Disease Control (CDC) created a set of standardized guidelines in 1975 to help acquire Lyme data during testing. Unfortunately, these guidelines are being misused as criteria for testing and diagnosing Lyme. The test returns an impressively high false negative rate (negative when the person has the infection). It has a low false positive rate (very few or no positives when the person does not have the infection). Such a test is good for surveillance of an illness (high specificity) but very poor for clinical use because of the very low sensitivity (misses many people who have the disease). Furthermore, when this method was first used there were only 10 strains of Borrelia identified and the test required at least 5 of the 10 specific antibodies to return a positive result. Currently there are over 100 known strains of Borrelia in the U.S. alone, with over 300 worldwide. Testing with this method misses approximately 50-99% of Lyme infections (depending on the study).
Why Testing for Lyme Disease is So Challenging
Central to the struggle of identifying Lyme is the structure of the bacterial cell and the immune system. Spirochetes such as Borrelia Burgdorferi are exceptionally equipped to avoid immune response and identification. As discussed above, it suppresses the TH1 intracellular immunity so the body cannot adequate fight intracellular infections. Also, these bacteria have saliva-like coating and flagellum, which allows for greater mobility and escape from the body’s defenses. These factors make identification difficult. Borrelia Burgdorferi can also alter their outer cell wall proteins to effectively avoid detection and negate the impact of certain treatments. In addition, a number of other infections are often transmitted with the Lyme bacteria. These co-infections further suppress the TH1 immune system, allowing all intracellular infections the ability to thrive and avoid being eliminated. Thus they are synergistic and also contribute to more severe symptoms. Learn more about Lyme co-infections here.
Proper Methods of Detection for Lyme Disease
Lab tests can be hugely beneficial in diagnosing Lyme, but they must be conducted properly and be specifically tuned for Lyme identification. Because Lyme is so deceptive, interpreting results effectively requires a knowledgeable physician that specializes in Lyme. Such a doctor is called an LLMD (Lyme Literate Medical Doctor).
Sadly, there is no single test for Lyme that can consistently and accurately identify its presence. However, advances in research and technology have allowed for improved testing methods. Regardless, of the testing approach it is highly recommended that the patient get assistance from a Lyme specialist or LLMD to oversee the testing process and aid in diagnosis. The following tests can be used, with varying degrees of success, to determine the presence of Lyme and the state of the infection.
Indirect Markers of Lyme
It is often beneficial to look for indirect markers that are telltale signs of Lyme disease. The patient should do a round of antibiotics or peptide treatment before doing indirect testing and/or treat the immune system before testing. After testing it will be clear who will or should test positive on further Lyme testing.
NK cell function < 30 LU (Quest): Is probably the most sensitive test for TH1 immune function. It measures the function of the natural killer cells when they are stimulated. This test is low (below 30 in approximately 70% of Lyme patients). The lower the level the more intense the immune suppression and the more likely the worse the symptoms.
Low immune cell function (ATP production) (Quest): This measures the amount of energy (ATP) produced form the immune cells.
Low CD 57 (Labcorp)
Elevated C4A & HTGFB (Quest-Nat. Jewish on dry ice): Are markers of the TH2 inflammation, which are often elevated with chronic Lyme disease. C4A should be done through Quest diagnostics (Jewish hospital) otherwise it may be falsely normal.
VEGF (increase with bartonella, suppressed by molds)(level of zero is likely a processing error: Vascular endothelial growth factor- bartonella stimulates VEGF while mold infections suppress it. One problem is that Labcorp is not sensitive and Quest is having a process problem, so if the Quest result is less than 0 it is likely just a processing error. If normal you could have both mold and bartonella. If high, it is a specific marker for bartonella. If you have a lot of psychiatric symptoms such as ADD, OCD, anxiety, or depression, bartonella is very likely.
Eosinophil cationic protein (ECP)(Babesia—may only increase after treatment): Can serve as a
a marker for babesia if elevated. Often times, it is high, then with treatment, it then elevates above normal. Thus, it is best to start after taking appropriate anti-parasitics.
Angiotensin converting enzyme (ACE) above 30: Normal range is 5-60, but studies show normal people in non-Lyme endemic areas is less than 30, and those exposed to Lyme are greater than 30. Above 30 is likely exposure.
Immune activation of coagulation (D-dimer, soluble fibrin monomer, prothrombin fragment 1+2, thrombin antithrombin complex,PAI-1)(Lyme/babesia) protein C&S: If any of the markers in the thrombotic marker panel, listed above, are low or high demonstrates likely IAC. If this coagulation effect is not addressed long term treatment success is unlikely, as the infections are often walled off by the fibrin coating.
Low Igg subclasses (Secondary to TH1-TH2 shift (low IFgamma)): Gamma globulin is needed as an important part of your immune system. Tick borne lllnesses will often suppress B-cells that produce antibodies so the IGG subclasses can be low. Most neurologists will state that this abnormality is genetic. They will however, often return to normal when the infection is eradicated also, with low TH1, the body is unable to convert IGM antibody to IGG antibody so Igenix western blots are often positive for IGM rather than IGG with significant/sever infections. The treatment bands will often switch from IGM to IGG with treatment.
Leptin above 12: Chronic infections will often cause leptin resistance. A leptin level greater than 12 is a sign of leptin residence and a potential sign of Babesia. Also, the leptin access is involved with TSH secretion and the thyroid access. If leptin is greater than 12, it demonstrates that the TSH is not an accurate marker (i.e. a normal TSH does not indicate normal thyroid function).
Identifying Lyme Disease
The challenges of testing Lyme effectively involve co-factors of infection, chronic disease, improper testing, or simply an unwillingness to test. There are many tests available that can assess some aspects of Lyme but is generally best to try and paint a picture to see the physiologic dysfunction and the array of infections. Of course, identifying the presence of Lyme is only the first step.
At Holtorf Medical Group, our physicians are trained to utilize cutting-edge testing and innovative treatments to uncover and address Lyme disease. If you are experiencing symptoms of Lyme disease or if you’ve been diagnosed with Lyme, but aren’t getting the treatment you need, call us at 877-508-1177 to see how we can help you!