Why is Testing for Chronic Lyme Disease Difficult?

Often referred to as the great imitator, Lyme disease has become increasingly common as the stealthy culprit for a variety of symptoms that people experience. There is a reason that Lyme is referred to as a stealth infection. Lyme disease is caused by a unique type of bacteria known as a spirochete named Borrelia burgdorferi. While Borrelia burgdorferi is the most common offender, there are many different species and sub species of spirochetes that can also create symptoms. The disease is transmitted to humans via tick bites from black legged ticks that are usually in their nymph phase, which means they are less than 2mm in size and difficult to see. There has been controversy over acute verses chronic Lyme presentations, which are now being referred to as Post – Treatment Lyme Disease by the CDC (Centers for Disease Control) and NIH (National Institutes for Health). This article serves to provide you with information about Chronic Lyme disease testing as well as ways to gauge whether or not a spirochete could be contributing to your chronic health problems.

Standard Testing

Standard testing uses direct and indirect testing. Direct testing is only specific for the microbe being tested and usually only useful for acute infections. The spirochete is called a stealth infection for a reason. It hides in cells, cysts, mucous membranes, lymph, synovial fluid, and deep in tissue, which makes it difficult to isolate. It also replicates in low levels during chronic infections – enough to make you sick, but not enough to be easily detected. Direct testing uses PCR (polymerase chain reaction) to isolate the microbe’s DNA. When able to isolate it is useful, but this is difficult to do in chronic Lyme.

Indirect testing uses serology. It looks at blood samples that look for your body’s response to Lyme or proteins from the actual spirochete itself. This kind of testing has high false negatives for the same reasons listed above. Due to the stealthy tactics of Lyme it is still difficult to isolate these responses in the blood.

The most common indirect tests used and what you will usually receive from your primary care doctor are ELISA and Western Blot.

  1. ELISA – This stands for Enzyme Linked Immunoassay. This measures your body’s antibody in your blood to the spirochete.
  2. Western Blot – This also detects your body’s antibodies. It is able to look at different microbes. This is why in order to be positive with this test you need multiple bands present. This is more sensitive than the ELISA for Borrelia. This can be ran at standard labs like Quest and LabCorp, but IGeneX tests for the most strains and is more sensitive. It is more expensive and it still has false negatives.

It was all negative, but I’m really sick

If all your standard Lyme tests with your primary care provider showed up negative, but you have the symptoms it is time to do some deeper investigation. While this is not diagnostic, taking the Horowitz Score Questionnaire helps you and your Naturopathic doctor get an idea of how vast your symptoms are and how likely they are to be from a tick – borne illness. Here is the Horowitz Questionnaire. If you score really high, then keep reading and continue deeper investigation.

Non – standard testing

  1. Armin – Armin labs has a variety of tests. They can check immune cell function and several co-infections that can be helpful. If interested in using their tests check with Global Lyme Alliance or Lyme Advise because sometimes they provide patients with financial assistance, discounted testing etc.
  2. Ceres Nanotrap – Ceres tests for spirochete in the urine. This test can be done at home. It checks for the outer surface protein from Borrelia bacteria. It is listed as having high sensitivity for acute infection. Chronic infections can be more difficult because the spirochete has even more time to be in tissue and not so much in blood. If this is the case using a sauna before Ceres collection can help drive the spirochete out of tissue and increase sensitivity of catching it in the urine. This test is not acknowledged as being diagnostic for Lyme by standard of care and conventional medicine.

How’s your body doing?

  1. Thyroid – It is common for the thyroid to have problems when dealing with stealth infections. Checking in on your thyroid is key for proper immune function, but it needs to be a complete thyroid panel that includes T3, rT3, T4, fT4, AND TSH. These can be ordered by your primary care provider, but in conventional medicine the rT3 and fT4 is often left out so make sure to request a complete panel.
  2. Inflammation – chronic Lyme can cause high levels of inflammation and lead to autoimmune conditions. Checking your CRP is a good idea. This can be ordered by your primary care provider.
  3. Immune function – Lyme takes a toll on the immune system. Checking your Natural killer cells (CD57 and CD56) is helpful for seeing how your immune system is doing and tracking your progress through treatment with Lyme. It is a common trend to see these become very low with chronic Lyme disease. These can be ran by Armin, but your primary care provider can also order them.
  4. Organic Acids Test – This test gives us a good look at if you have any candida, mycotoxins, dysbiotic bacteria, how your oxidative stress levels are, and how your mitochondria are functioning. If you have any of these out of balance it will be especially hard to get your body in a place where it can overcome Lyme. This is especially true with mold and candida! It can also give insight to whether or not MTHFR testing is appropriate. If you cannot detox properly it will be very difficult for you to feel better when treating Lyme.
  5. Comprehensive stool test – If your Organic Acids test comes back high for dysbiotic bacteria and candida then a stool test will be helpful in restoring your gastrointestinal health. Comprehensive stool analysis gives you education on what strains of good bacteria you have, which you need, how your sIGA is ( your body’s first line immune response in your gut), as well as how your are absorbing and breaking down your food. It also checks to see if there are any parasites, which could complicate things!
  6. Adrenal and hormones – During chronic Lyme the adrenals get tired from fighting a chronic infection. This takes a toll on  your adrenals and hormones. In order to feel better evaluating these systems and supporting them appropriately is essential. The Dutch Test can be very helpful here.
  7. Other infections – It is common to see Mycoplasma elevated with Lyme as well as reactivated Epstein – barr virus and Cytomegalovirus. Testing for these can help when picking out the best interventions to streamline your healing.

As you can see Lyme is complex not only in detection and diagnosis, but also in how it affects your body. It affects everyone’s body differently. This is why it is very important to take a holistic approach and work with a doctor that will create a plan specific to you. Naturopathic doctors (make sure to verify licensure and CNME approved 4 year medical doctorate) are the experts of personalized medicine, which is why they are a vital addition to healing from chronic illnesses. You can look for one in your area through the Institute for Natural Medicine.

References

  1. Abbas AK, Lichtman AH. Basic Immunology: Functions and Disorders of the Immune System. Philadelphia, PA Saunders/Elsevier. 2011.
  2. Barbour AG, Hayes SF. Biology of Borrelia Species. Microbiology Reviews. 1986;50(4):381-400.
  3. Bralley A, Lord RS. Laboratory Evaluations in Molecular Medicine. Institute for Advances in Molecular Medicine. 2001.
  4. Castro C, Gourley M. Diagnostic Testing and Interpretation of Tests for Autoimmunity. Journal of Allergy and Clinical Immunology. 2010 Feb; 125(2 Suppl 2): S238–S247. doi: 10.1016/j.jaci.2009.09.041
  5. Citera, M., Freeman, P. R., & Horowitz, R. I. (2017). Empirical validation of the Horowitz Multiple Systemic Infectious Disease Syndrome Questionnaire for suspected Lyme disease. International Journal of General Medicine, 10, 249–273. http://doi.org/10.2147/IJGM.S140224
  6. Lab Tests Online. American Association of Clinical Chemistry website. https://labtestsonline.org/
  7. “Lyme Disease.” Centers For Disease Control and Prevention, https://www.cdc.gov/lyme/index.html. Accessed 29 Nov. 2017.
  8. Murray PR, Rosenthal KS, Pfaller MA. Medical Microbiology. 8th ed. Philadelphia, PA. Elsevier. 2015.
  9. Rawls, William. Unlocking Lyme. Cary, NC, First Do No Harm Publishing, 2017.

Categories: lyme disease, naturopathic medicine, chronic fatigue, chronic illness, health and wellness

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Dr. Kasey

Naturopathic doctor