Testing of Lyme Disease and photo of Tick

Testing of Lyme Disease and Problems with It

Lyme disease is an infectious disease spread by ticks. It is a growing problem with hundreds of thousands being diagnosed each year. However, Lyme disease is possibly the most misunderstood and controversial health issue. Many people go misdiagnosed and silently suffer from chronic and serious symptoms of chronic Lyme disease without receiving proper treatment. Unfortunately, current testing for Lyme disease is highly unreliable, and many doctors are not versed enough in Lyme disease to provide an accurate diagnosis and treatment.
In this article, you will learn what Lyme disease is, the difference between acute and chronic Lyme disease, and their symptoms. You will learn about current testing methods for Lyme and the problems with these tests. You will learn what tests may further help accurate diagnosis, and why you need a Lyme-literate health practitioner for proper diagnosis and successful treatment.

What Is Lyme Disease?

Lyme disease is an infectious disease. It is caused by the Borrelia burgdorferi bacteria found in ticks.
Lyme is more common in wooded areas or in nature. It is transmitted to the human body by the bite of an infected black-legged or deer tick. Based on the old standards, in order to transmit the disease, the tick usually has to stay in the body for 24 to 48 hours or longer. However, the new studies show that even 15 min from tick attachment it may transmit the variety of microbes into the victim.

Acute vs Chronic Lyme Disease

Acute Lyme disease refers to a short-term or recent infection, whereas chronic Lyme refers to a long-term infection with ongoing health problems. After getting infected with Borrelia burgdorferi, you may develop symptoms of acute Lyme disease. When caught early, within the first few days to weeks, acute Lyme disease is usually treated with a course of 1-2 antibiotics.
However, chronic Lyme disease is increasingly prevalent as well. Some people, unfortunately, are simply resistant to treatment. In other cases, Borrelia burgdorferi simply lingers in the body even after adequate treatment. While in other situations, acute Lyme disease symptoms may be too mild to take seriously, and the infection becomes chronic. In other cases, acute Lyme gets misdiagnosed and confused with the summer flu or another short-term illness and patients never get adequate treatment. Unfortunately, when the bacteria has fully integrated itself into your system, it leads to chronic health issues, and it is much harder to identify and shift.

symptoms from lyme disease include rash

Symptoms of Acute Lyme Disease:

  • Flat, circular rash with a bull’s eye
  • Joint pain, including neck and back pain
  • Fatigue
  • Muscle pains
  • Headaches
  • Sleep issues
  • Fever
  • Swollen lymph nodes
  • Concentration problems

Not all people with acute Lyme have a bull’s eye rash, actually, those who do are minority. Many people miss the tick bite altogether. Not all people with acute Lyme disease experience severe symptoms. Some may not visit the doctor. In some cases it may be confused with the flu or due to inaccurate Lyme testing, may get tested for autoimmune or other health conditions instead of Lymes. In some cases, symptoms may be written up as symptoms of stress, fatigue, or psychosomatic symptoms.

Symptoms of Chronic Lyme Disease:

  • Fatigue
  • Pain
  • Migrating and intermittent joints and muscle pains
  • Migrating pains or swelling in elbows, knees, and shoulders
  • Sleep troubles
  • Memory and concentration problems
  • Speech problems
  • Neurological issues — migrating numbness, tingling or burning pains
  • Fibromyalgia-like pain
  • Other chronic health issues

Chronic Lyme disease is often confused with fibromyalgia, autoimmune conditions, mental health issues, and psychosomatic illness. Without proper diagnosis and treatment, people with chronic Lyme disease may get worse over time and never recover.

Lyme Disease from Ticks

Conventional Testing for Lyme Disease

Conventional testing for acute Lyme disease usually starts with a health story. Your doctor will look for tick bites and rashes. They will perform a physical exam looking for symptoms of Lyme disease.
If your doctor believes that you have Lyme disease, they may order the following “standard-of-care” tests:

  • Enzyme-linked immunosorbent assay (ELISA) may be ordered to detect antibodies against B. burgdorferi.
  • Western blot may be used to confirm a positive ELISA test result. It is only used if your ELISA test is positive and checks for the presence of antibodies specific to B. burgdorferi proteins.
  • Polymerase chain reaction (PCR) may be used to evaluate people with Lyme arthritis or nervous system symptoms. This test is not routinely used as it has a very low sensitivity.

If a patient tests positive for both ELISA and Western blot tests the conventional diagnosis of Lyme disease can be established.

Problems with Testing for Lyme Disease

The problem is that Lyme disease is critically misunderstood by many people in the medical profession. Most doctors are not very well-versed in Lyme disease. Testing is not reliable. Many medical professionals are simply not educated about chronic Lyme disease to recognize and treat it. Conventional doctors often have a difficult time diagnosing, understanding, or treating something that they cannot see or isolate. Hence, Lyme disease diagnosis and treatment may be one of the most controversial and difficult issues in medicine. There are a lot of grey areas, a lot of misunderstandings, and unreliable testing, so going to a Lyme-literate practitioner is critical.

Lyme Testing Is Not Designed to Detect the Lyme-Causing Bacteria

It is important to know that there are many types of Borrelia, not just B. burgdorferi, that also cause Lyme-like illnesses. Despite of the variety of bacterias, the conventional tests only look for one species of Borrelia, B. burgdorferi. There are actually 16 known strains of Borrelia. Another example of Lyme-related infection, for example, is caused by B. mayonii. If it is not that you are infected with B. burgdorferi, conventional testing may not pick up on your Lyme diagnosis and may be misdiagnosed and left without treatment.

Inaccurate Results and False Negative Due to Lower Test Sensitivity

Most non-Lyme literate doctors and labs stick to the two-step test for Lyme that is recommended by the CDC and approved by the FDA. These tests include the ELISA followed by a Western blot test. Both tests are only designed to detect B. burgdorferi and no other Lyme-related bacteria or co-infection.

One of the problems with testing for Lyme disease is that the ELISA tests are not always accurate. False negatives may occur. For example, if you get tested too soon after getting bitten and infected, it’s possible that your body hasn’t developed enough antibodies for the test to detect the bacteria. If your ELISA test is negative, many labs will not move onto the Western blot. Many doctors don’t retest, even if your symptoms persist and are in correspondence with the symptoms of Lyme disease. Research has shown that the two-step testing of ELISA and Western blot may miss up to 60 percent of Lyme cases.

The ELISA and Western blot are also not accurate when it comes to chronic Lyme disease, and are more helpful when it comes to acute Lyme disease.

False-Negatives May Also Occur

While false negatives may occur, false positives also commonly occur. After getting infected with B. burgdorferi, your immune system may not show a positive response with positive IgM (young antibodies), however, neither convert or mount an immune response with IgG (old antibodies). One study, for example, has found that over 50 percent of test participants showed false positive for Lyme disease. This may happen because of early antibiotic use or because the B. burgdorferi destroys the specific part of your lymph nodes that are responsible for IgG antibodies.

Some patients simply will not ‘convert’ to a classic immune response that most conventional healthcare professionals and testing are looking for. If you are working with a health practitioner who is not Lyme-literate, they may have a false-positive interpretation as positive for Lyme disease, when you don’t have Lyme disease.

Indirect vs Direct Testing: More False-Negatives

The two-step testing process used by most doctors is indirect diagnostic methods that do not look for or detect the bacteria that are causing the infection but measuring your body’s immune system response when the bacteria is present. There are several problems with this method:

  • Timing: During the early stages of the disease, your body may not have created enough antibodies yet to show up on the ELISA test. Most doctors don’t retest even if symptoms persist.
  • Immune suppression: Tick bites are tricky. The saliva of Lyme-causing ticks has an immune-suppressing component that may prevent or delay your body’s immune response, hence, your body won’t respond to the two-step test.
  • Antibiotics: Taking antibiotics around the time of the infection may also prevent your body from making enough antibodies to show up on your test.
  • Modified form of Borrelia: In some cases, the bacteria will turn into a cyst and prevent the production of antibodies.
  • Weakened immune system: If you have a weak or compromised immune system due to an illness, co-infection, or poor diet, false negatives may occur.
  • Seronegative patients: Some patients’ bodies simply do not produce antibodies at all.

More Reliable Diagnosis

In order to get the right diagnosis and the right treatment, you need to find a Lyme-literate functional or integrative medicine practitioner who understands Lyme disease.

Direct Testing

Direct testing methods are better than indirect testing. They don’t simply rely on your body’s response to bacteria. Instead, they are looking for specific disease-causing bacteria. This can help to determine if you have Lyme, what exact bacteria is causing it and what co-infections you may have.

More Lab Testing

Lab testing only provides a glimpse of what’s going on in your body. There is certainly more needed than simple Lyme blood testing. Other blood tests, besides the standard Lyme tests, may help to evaluate the state of your health and get a better understanding of what is going on in your body. It is crucial that you find a Lyme-literate functional doctor who listens to your symptoms and is able to make an accurate Lyme diagnosis based on your symptoms, health history, and other tests.

Some further blood tests that may help accurate diagnosis include:

  • Complete blood count (CBC): white blood cells count (WBC), differential (diff), hemoglobin (HB)
  • Blood chemistries: electrolytes, liver function, kidney function
  • Glucose metabolism: fasting blood glucose, fasting insulin hemoglobin A1c (HbA1c)
  • Minerals: magnesium and calcium
  • Thyroid function: complete thyroid
  • Lipid panel
  • Autoimmune testing rheumatoid factor, ANA titer
  • C-reactive protein (CRP)
  • Vitamins: vitamin D and B12
  • Iron: ferritin
  • Urinalysis: pH, WBCs, nitrites, protein, bilirubin
  • Mold and mycotoxins
  • Food sensitivities
  • Omega-3/omega-6 ratio
  • Cytokine testing (Th1/Th2)
  • Adrenal hormone testing
  • Reproductive hormone testing: estrogen, progesterone, testosterone
  • Testing for toxins
  • Comprehensive stool analysis: yeast, parasites, viruses, and bacteria
  • Microbes testing
  • Genetic testing, like methylation ( MTHFR gene mutation)
  • Testing for neurological, cardiac, and GI symptoms
  • Testing for Lyme co-infections

Find a Lyme-Literate Integrative or Functional Health Practitioner

If you know or suspect that you have a Lyme disease (acute or chronic), it is important that you find a Lyme-literate functional medicine practitioner to help you received the right diagnosis, identify the root cause of your condition, and prescribe a personalized treatment.

As a Lyme-literate functional and integrative doctor, I can help you to receive the right diagnosis, address the underlying causes of all your health issues, and get the right treatment using a system-oriented approach, engaging both patient and practitioner in a therapeutic partnership. As an experienced functional medicine doctor with an integrated expertise of both Western medicine and traditional Eastern practice, I can assess all the factors, including diet, lifestyle, stress, toxicity, allergies, sleep habits and medication that may affect your immune system in order to accurately diagnose Lyme disease and/or other health issues or co-infections and provide a personalized and effective plan to improve other organs function like the thyroid condition, repair your body and regain your health and well-being.

If you would like to get more information about Lyme disease and other tick-borne illnesses or to schedule a functional medicine consultation, please call my office at 212-696-4325.

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