Lyme Disease Facts

What is Lyme Disease?

Lyme disease is a bacterial infection most commonly caused by a corkscrew-shaped bacterium called Borrelia burgdorferi, also referred to as a spirochete. There are five subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's various antibiotic resistances.    

How do people get Lyme Disease?

You can contract Lyme disease after being bitten by a tick. Although new research shows that Lyme disease can be contracted through other insect bites such as mosquitoes, spiders, fleas, biting flies, and mites. There is also evidence showing that Lyme disease can be sexually transmitted and congenital.

Why is Lyme disease so difficult to diagnose?

Lyme is a “Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart. 

Lyme disease can mimic the symptoms of over 350 diseases which leads to patients with Lyme disease being frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, lupus, Rheumatoid Arthritis, Parkinson’s, and various psychiatric illnesses, including panic attacks, anxiety, and depression.  

Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked.

What are the symptoms of Lyme disease?

The signs and symptoms of Lyme disease vary greatly from person to person and generally affect more than one body system. The skin, joints, and nervous system are affected most often.

Brain and Central Nervous System:  migraines, double vision, dizziness, tinnitus, vertigo, excessive sensitivity to noise or light, shoulder droop, debilitating fatigue, gastrointestinal motility disturbances, urinary retention or incontinence, brain fog, poor memory, poor sleep, lack of verbal fluency, confusion or disorientation, decreased ability to concentrate, facial nerve tics or paralysis, sore jaw, sinusitis, mood swings, difficulty chewing or swallowing, sore throat, hoarseness, muscle twitches, numbness and tingling, shooting pains, and lower back or neck pain.

Psychiatric Symptoms: Lyme has also been found to mimic virtually all the psychiatric disorders, including panic attacks, generalized anxiety, depression, depersonalization, Obsessive Compulsion Disorder, Attention Deficit Disorder, psychoses, hallucinations, delusion, mood swings, episodes of range, crying, reduced impulse control, suicidal thoughts and behavior, manic-depression, sleep disorders, Autism-like syndrome, and delirium, progressive dementia.

Muscles, joints, and bones: pain that comes and goes (with or without swelling), cramps, and stiffness.

Circulation: too fast or two slow heart rate, irregular heartbeat (palpitations), inflammation of the heart muscle or arteries, and chest pain.

Breathing: sinusitis, difficulty breathing, and pneumonias.

Skin: Bull’s-eye rash, other rashes, itching, crawling sensations, benign cysts and nodules, and skin discoloration.

Eyes: pain, inflammation, blurred or double vision, retinal damage, floaters, flashing lights, light sensitivity, dry eye, and blindness.

Ears: itching, earache, buzzing, ringing, and sound sensitivity.

Digestive tract: nausea, vomiting, diarrhea, constipation, loss of appetite, mild liver function abnormalities, and spleen tenderness and enlargement.

Genitourinary tract: inflammation of the urethra and bladder, pelvic pain, testicular pain, and loss of sexual desire.

General: insomnia, tiredness, lack of stamina, fever, vague discomfort, irritability, nervousness, and weight loss or gain.

How is Lyme disease diagnosed?

The typical diagnostic tests for Lyme disease are very insensitive, therefore, a negative test result does not mean you don't have Lyme.

The two most common tests used are the enzyme-linked immunosorbent assay (ELISA) and the Western blot.

During the first 4 to 6 weeks of Lyme disease infection, the tests are unreliable. Even later in the disease process, these tests are highly insenitive, missing approximatley half of those who have Lyme disease.

The Western Blot test is the preferred test as it uses electricity to separate antigens into bands. If your test has bands in the right places, and the right number of bands, it is positive.

The CDC requires 5 out of 10 bands for a positive test. However, some bands on the Western blot are more significiant, therefore, your doctor may decide that you have Lyme disease even if your Western blot is not CDC positive. The current CDC criteria, which is used by the IDSA and health insurance companies, for a positive Western Blot are as follows: 

For IgM, 2 of the following three bands have to be positive: OspC (22-25), 39 and 41

For IgG, 5 of the following ten bands have to be positive: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.  

The criteria used by IGeneX considers a Western Blot (IgM or IgG) to be positive if just two or more of the following bands are positive: OspC (23-25), 31, 34, 39, 41, and 83-93.  

To learn how to read your Western Blot test, click here.

Some experts say that in order to test for Lyme disease, you have to first treat the Lyme disease in order for your immune system to respond by releasing white blood cells to be able to mount an appropriate immune response. Although, it is possible to avoid this by using direct microscopy.

One of the drawbacks to testing for Lyme disease is the fact that the tests are looking at the blood. If the infection is in the central nervous system, joints, or connective tissue, the infection will not show up in the blood.

When Lyme disease is suspected, some experts suggest treating for six to eight weeks, then follow with a Western blot test, which measures immune response.

To date, the most accurate tests are performed by IGenX Lab in Palo Alto, California, and Fry Labs in Arizona for direct microscopy.

Some doctors utilize an indirect test using CD57. CD57 is a specific group of natural killer cells that can be damaged by the Lyme spirochetes. If your DC57 numbers drop to a certain level, it could be an indirect indicator that you may have Lyme disease.

Due to the inaccuracies of Lyme disease testing, many Lyme Literate Medical Doctors (LLMD) use a clinical diagnosis. It is important that the LLMD be familiar with the varied presentations of Lyme disease in order to make a clinical diagnosis.

The Lyme disease Controversy!

There is much controversy around Lyme disease. This is in part because most doctors don’t understand Lyme disease. Even many doctors who consider themselves experts, do not completely understand its complexities.

For unknown reasons, the CDC has underestimated the number of Lyme disease cases for decades. Lyme is the number one tick-borne illness in the US. The CDC reports there are 24,000 new cases of Lyme disease in the US each year, but the CDC also states that past figures may have been underreported by tenfold. ILADS (International Lyme and Associated Diseases Society) believes newly diagnosed cases of Lyme may occur at a rate five times higher than the number of new AIDS cases.

Then you have the Infectious Diseases Society of America (IDSA), who regards Lyme disease as “hard to catch and easy to cure” with a short course of antibiotics. IDSA claims that spirochetal infection cannot persist in the body after a short course of antibiotics. The group also denies the existence of chronic Lyme disease.

In contrast, the International Lyme and Associated Diseases Society (ILADS), regards Lyme disease as often difficult to diagnose and treat, resulting in persistent infection in many patients. ILADS recommends individualized treatment based on the severity of symptoms, the presence of tick-borne coinfections and patient response to treatment.

Even though ILADS acknowledges persistent Lyme disease, they are still very far behind in its suggested treatment guidelines.

Important information about Lyme disease:

1. Lyme disease is prevalent across the entire United States and Worldwide. Unfortunately, ticks do not have any geographic boundaries.

2. Fewer than half of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15%. So if you never saw a tick on your body, it doesn’t mean you don’t have Lyme disease.    

3.  Fewer than half of patients with Lyme disease recall a rash. Although the bullseye rash (Erythema Migrans) is considered the classic sign to look for, it is not even the most common dermatologic manifestation of early Lyme infection. It is far more common to see atypical forms of this rash. It is important to know that the Erythema Migrans rash is a clear, unequivocal sign of Lyme disease and requires no further verification prior to starting treatment. It is suggested that a course of antibiotics for 6 weeks is sufficient to treat acute Lyme disease, although many people need longer treatment. Shorter treatments have resulted in upwards of a 40% relapse rate, leading to chronic long term symptoms.

There are no studies that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme or any other tick-borne diseases. However, there is a plethora of documentation in US and European medical literature demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme and other tick-borne bacteria.           

4. There is no test currently available to determine whether the bacteria organism is eradicated or the patient is cured.      

5. There are five subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's various antibiotic resistances.    

6. Lyme disease is a “great imitator” and should be considered in the diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, Gulf War syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder, autism, orthostatic hypotension, encephalitis, meningitis and patients with various difficult-to-diagnose multi-system syndromes.    

Co-Infections and other Tick Borne Diseases.

Along with Lyme disease bacteria, ticks and other vectors carry other infections, called co-infections, or Tick Borne Diseases (TBD).

The most common co-infections include Babesia, Bartonella, Ehrlicia, Anaplasma, Colorado Tick Fever, Tick-borne Relapsing Fever, Q Fever, Powassan Viral Encephalitis, Rocky Mountain Spotted Fever, and Tularemia.

TBD’s make treatment more difficult due to the diverse complexity of symptoms.

How do you treat Lyme Disease?

Some LLMD’s are likely to treat more aggressive with longer antibiotic treatment to ensure that the disease does not progress. They are also unlikely to withhold treatment pending laboratory test results.

Many LLMD’s are taking an integrative approach to treating Lyme disease and co-infections. This would include using alternative modalities and nutritional supplements to support and regulate the patient’s immune system.  Some patients might choose to treat only with alternative methods. Ultimately, the choice is yours.

Chronic Lyme Disease Treatment

The earlier you treat Lyme disease, the more successful the treatment. Unfortunately, a great number of people with Lyme disease are misdiagnosed for years, if not decades, allowing the infection to take a strong hold. This delay in treatment not only disrupts quality of life, but makes the disease harder to treat.

LLMD’s believe that ongoing symptoms most likely reflect active infection, which should be treated until the symptoms have resolved. These physicians use treatment approaches employed for persistent infections like tuberculosis, including a combination of drugs and longer treatment durations.

Ideal antibiotics, administration, and duration for treatment of chronic Lyme disease is not well established.

Your best chance of beating Lyme disease, especially chronic Lyme disease is by finding an integrative LLMD.