Lyme Diagnosis


The Great Imitator

Lyme disease is one of the most misunderstood, yet widely growing illnesses in Canada. One of the major challenges and why it eludes many doctors is that Lyme can mimic and produce symptoms similar to over 300 diseases. For example, a high percentage of people diagnosed with chronic fatigue are actually suffering from Lyme. The muscle joint and tendon pain seen in fibromyalgia and arthritis have also been linked to Lyme disease. Neurological symptoms are easily confused with multiple sclerosis or can present as psychiatric symptoms. An extremely high number of Parkinson’s and Alzheimer’s cases have been connected to Lyme.

Lyme can cause, mimic, manifest as, or is a contributing factor to many conditions. This is why it is called the Great Imitator, because its symptoms are so similar to other conditions. Common misdiagnoses include heart conditions, Attention Deficit Hyperactive Disorder (ADHD), amyotrophic lateral sclerosis (ALS - Lou Gehrig’s disease), Alzheimer’s, anxiety, arthritis, bipolar, interstitial cystitis, Bell’s palsy, acrodermatitis chronica atrophicans (ACA), chronic fatigue, depression, encephalitis, fibromyalgia, lupus, Meniere’s syndrome, multiple sclerosis (MS), Parkinson’s, rheumatoid arthritis and schizophrenia. It is estimated that up to 50% of chronically ill patients are infected with Lyme.

  • Symptoms

  • Acute Symptoms

  • Chronic Lyme Symptoms

  • Co-infection Symptoms

The symptoms of Lyme disease vary from person to person. Severity and type of symptom depends upon the strain of Lyme infection and type of co-infections. For example, Lyme can appear as only arthritis while other individuals have numbness, burning pain in the legs and feet or Bell’s palsy (partial facial paralysis). It can present as mental illness with mood disorder and even psychosis. Lyme can also cause weight gain, weight loss or skin disorders. Any combination of symptoms can be present. For some people, symptoms are bothersome but bearable, and they are able to go work everyday and have a productive life. For others, Lyme is debilitating and progressive, they can’t work and have a poor quality of life. In a minority of severe cases, it can be fatal. For reasons not yet known, women tend to suffer from Lyme more than men.

After an infected tick bite, the first signs of Lyme infection are often flu-like symptoms that include sore throat, congestion, headache, abdominal pain, swollen glands, stiffness, fatigue, muscle ache and joint pain (not necessarily red or swollen). These symptoms can appear quickly or gradually over time. In the acute stage of infection, these symptoms are often dismissed as the flu, but the person does not actually have the flu. If these early symptoms are ignored, more serious and quite severe problems can develop months or years later.

While there is an almost endless list of symptoms associated with Lyme, the great imitator, the most common symptoms for chronic Lyme are:

  • brain fog
  • memory loss
  • numbness, tingling, spasms
  • fatigue
  • pain in joints and muscles (often burning pain)
  • anxiety
  • depression

In chronic Lyme there is often an underlying level of discomfort that fluctuates with periods of increased symptoms. The Lyme spirochete has a cyst form that is very resistant to treatment and can hide from the immune system. If stressed, the cysts can morph back into the spirochete form responsible for symptoms. This is postulated to be the reason that some patients have relapses of symptoms and infection.

A detailed list of chronic Lyme symptoms includes:

  • Confusion, difficulty with concentration, thinking, reading and new information. Forgetful and loss of short term memory. Disorientation, become lost or go to wrong place. Misspeak words or wrong word. Can’t find words.
  • Anxiety, panic attacks, depression, mood swings (bipolar), irritable, may experience psychosis (hallucinations, delusions, paranoia).
  • Joint swelling and pain, unexplained back pain, muscle pain or cramps, stiffness, and twitching, muscle weakness; tremor and seizures. Numbness, tingling, burning or shooting pain. Neck stiffness and pain, and cracking (crepitus). Soles of feet burning pain. Hypersensitive skin.
  • Fatigue and poor stamina. Poor sleep, early awakening, napping during day, insomnia or excessive night time sleep.
  • Headache, ear pain, light sensitivity, double or blurry vision. Ringing, buzzing or decreased hearing. Vertigo, motion sickness, spinning, loss of balance; light headed, woozy, need to sit or lie down. Head congestion.
  • Shortness of breath, air hunger and chronic cough.
  • Sore throat, persistent swollen glands, fevers, diarrhea; low abdominal pain, stomach pain, cramps, queasy stomach or nausea.
  • Heart palpitations, arrhythmias, heart murmur, valve prolapse, heart block on EKG, chest wall pain or sore ribs.
  • Facial paralysis (Bell’s palsy), dental pain.
  • Unexplained weight gain or weight loss; hair loss; menstrual irregularity, breast pain, irritable bladder, pain in genital area, loss of libido, night sweats.
  • Heartburn, erectile dysfunction, exaggerated or worse symptoms from hangover.

Co-infections (bacterial, viral, parasitic, etc.) are usually transmitted at the same time the patient is infected with Lyme disease. Eighty percent of chronic Lyme sufferers have one or more co-infections. The most common co-infections are Babesia, Bartonella and Erlichia whose symptoms include the following:

  • Babesia: red dots on the abdomen and air hunger (the inability to take a deep breath), high fever and chills, fatigue, headache, drenching sweats, muscle aches, nausea, and vomiting.
  • Bartonella: red streaks on the abdomen and enlarged lymph nodes in the neck, fever, fatigue, headache, poor appetite, swollen glands (head, neck and arms), elevated neurologic symptoms, lower abdominal pain and sore soles
  • Erlichia: sharp pain behind the eyes, fever, fatigue, muscle aches and headache.

For some patients, a co-infection may be the only infection as the Lyme disease may have never been present or may be cleared. Singular co-infections are difficult to identify, however, as most co-infections have identical symptoms as Lyme disease. More often, Lyme is the overriding infection and there is a high probability of one or more co-infections accompany it.

  • Testing

    Lyme testing in Canada’s public health system is two-tiered. The first test is an ELISA (enzyme-linked immunosorbent assay) that screens for elevated blood levels of antibodies produced in response to Borrelia burgdorferi, the bacteria that causes Lyme disease. If the test is negative, the patients are told that they do not have Lyme and no further testing is done. If the test is positive or equivocal (ambiguous), then a second test, the Western Blot is done for confirmation.

  • Many False Negatives

    The more accurate Western Blot specifies which Lyme-associated antibodies are present in the bloodstream. Interpretation of the antibody bands on the western blot test is complicated, and is based upon the number of bands being present. If a patient, however, only has a couple of highly specific Lyme antibody bands, the result will be negative since they did not have enough bands. The ELISA and Western Blot tests produce many false negatives (estimates are 50 to 80% for ELISA and 30% for Western Blot). This means that these tests miss a lot of patients who have active Lyme infections.

  • Private Lab Testing

    As a consequence, Lyme practitioners order more comprehensive testing from private labs that specialize in Lyme testing and have sophisticated tests such as the Polymerase Chain Reaction (PCR) that confirms Lyme bacteria DNA. There are several private laboratories in the United States that test for Lyme disease, co-infections and for immune system markers to monitor the disease. Costs range from a few hundred to a thousand dollars, and often more than one test is needed to confirm Lyme. Nothing is 100%, and it is still possible to be negative on these highly developed tests. It doesn’t mean that you don’t have Lyme disease, however, because testing is only one small part of the diagnosis process, and is not a requirement to make a Lyme diagnosis.

    At our clinic we have a screening test that has a good correlation to Lyme disease. It does not quantify or qualify the severity of the disease, but the screening is inexpensive and results are immediate. If you have any suspicion or concern that you might have Lyme disease, the screening test is an excellent tool. It is often used to help determine if more expensive lab testing is needed.

    Body systems are inter-connected and need to be supportive of each other for overall health. Since Lyme and associated infections can affect the entire body, other testing to rule out hormone imbalances, heavy metal toxicity, nutritional deficiencies and allergies may be required.

  • 1
  • Diagnosis

  • Acute Lyme

  • Chronic Lyme

Lyme disease is a clinical diagnosis based on patient history and clinical symptoms. Blood testing can help to confirm a clinical suspicion, but a positive lab test is not a requirement to make a diagnosis. Diagnosis is very challenging due to a number of factors:

  • Even though the disease is primarily transmitted via a tick bite, less than 20% of patients remember being bitten by a tick. Exposure is very easy to miss because the ticks are so small (about the size of a pin head) and they numb the area while biting.
  • The classic diagnostic sign is a bull’s eye rash (erythema migrans) surrounding a tick bite. Unfortunately, this is rarely seen. Current research indicates that only 30% of Lyme patients report a rash of any kind and less than 10% develop the classic bull’s eye.
  • The time line for the appearance of symptoms can vary significantly. After an infected tick bite, symptoms can appear right away or within a few weeks, or the infection can go dormant for months or even years. This depends upon the person’s state of health. A strong immune system and general good health can delay the onset of Lyme. When your body becomes weakened or experiences a stressor that decreases your immune function, Lyme will rear up. Chronic Lyme can linger and seems to come and go.
  • Lyme symptoms resemble many other diseases. It is often confused with fibromyalgia, chronic fatigue and MS, to name a few. It is often misdiagnosed and can be a contributing factor to many conditions.
  • Lyme is not a singular illness. It is usually accompanied with a full complex of co-infections and neurotoxins.
  • Lab testing, even from specialty labs, can come back negative in an infected person.

When people come into the office with a bull’s eye rash and flu-like symptoms, the diagnosis is crystal clear. In fact, at this stage, lab tests are not even necessary because it takes 3-4 weeks for antibodies to develop. Patients with early stage Lyme may complain of fever, fatigue, swollen glands, headache, stiff neck, backache and joint aches.

The biggest challenge with acute Lyme is the process that many patients have to go through when they access the public health system. If the person does not display the classic rash (only 10% of people have it) and is not living in an endemic area, testing is usually not ordered. If they do present with a rash, the blood tests at this point can be unreliable because it can take weeks for antibodies to show up in the blood. The additional problem is that the testing is only about 35% accurate for acute Lyme.

If there is a positive blood test for Lyme, the treatment protocol is a few weeks of low dose antibiotics. Studies have shown conclusively that the antibiotic dose is too low and the course of treatment is too short to successfully treat Lyme. There may be some temporary relief, but the acute Lyme becomes chronic Lyme.

Despite the complexity, to a Lyme-literate doctor, chronic Lyme is readily diagnosed, even in the absence of a positive laboratory result. The patient has been sick for a long time, months, years, sometimes even decades. Most patients have seen many doctors and received an assortment of diagnoses over the years, yet have not been treated successfully. About 30% would have been treated unsuccessfully for acute Lyme and now it is past the three months to one year mark. Some can recall when they were infected, but many have no idea when or where they may have contracted Lyme. The common symptoms, brain fog, loss of memory, numbness, tingling, spasms, fatigue, pain in joints and muscles (often burning pain), anxiety and depression, tend to cycle from low to extreme. It is usually not until the symptoms become significant that Lyme is diagnosed.