Lyme Disease - The Beginning:  TOP

Early records of conditions possibly associated with Lyme disease date back to the 1880s and on Long Island, for many years there was talk of "Montauk Knee" and "Long Island Malaria." Lyme disease is named after the Connecticut town of Lyme where it was first recognized in the United States in 1976.  Lyme disease is a bacterial infection caused by a spirochete, a spiral-shaped bacteria called Borrelia burgdorferi (Bb). The bacterium is named after Dr. Willy Burgdorfer who discovered it. TOP

More than 100 strains of Bb have been identified in the United States with 300 strains of the organism have been identified throughout the world. Cases of Lyme disease have been reported in North and South America, Europe, Asia, Africa and Australia and it is one of the fastest growing vector borne diseases.  Both humans and animals can be infected with Lyme disease through the bite of an infected tick. In the United States Lyme infection is usually transmitted by, though not limited to, three species of tick:  TOP  

  The black-legged tick (ixodes scapularis) on the East Coast and in the Midwest (commonly known as the deer tick).                                                   

  The western black-legged tick (ixodes pacificus) in the Western U.S. (also commonly known as the deer tick).

  The lone star tick (amblyomma americanum), was previously located predominantly in the south, but recently, the lone star tick is on the move and is said to be out-competing the other ticks and is now found in many areas of the Northeast. TOP

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Late-stage Infection: 

When Lyme disease goes undetected, undiagnosed and untreated for months or years following infection; the bacteria can spread to the nervous system, the heart and other organs, tendons and joints. This late-stage infection can result in a wide variety of physical, emotional, and mental or cognitive symptoms. The late-stage list of symptoms is long and can include arthritis, heart abnormalities, Bell's palsy (paralysis of one or both sides of the face) and severe cognitive or mental dysfunction including memory loss, confusion, psychiatric problems, etc.

Misdiagnosed: Lyme disease is often referred to as the Great Pretender because the symptoms of Lyme disease can so closely mimic the symptoms of other diseases. Although no one knows the exact figures, Lyme patients have been misdiagnosed with many other conditions including chronic fatigue syndrome, fibromyalgia, multiple sclerosis, menopause, depression, Alzheimer's disease, ALS or Lou Gehrig's disease, Parkinson's disease, and others.  Some patients do not receive any definitive diagnosis long after the presentation of symptoms and may even be repeatedly told that they are fine.

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Symptoms: 

Early signs of Lyme disease include flu-like symptoms and in possibly less than 50% of cases, a Lyme rash. The symptoms include muscle aches, joint pain, fatigue, fever and headache.  Symptoms may show up days or weeks and occasionally months after infection.

The Lyme rash is referred to as Erythema migrans or EM. It used to be believed that only a bulls-eye rash at the site of the tick bite indicated Lyme disease. We now know this is not accurate. We know that the rash may not show up at all, or it may appear too light in color to be noticed. The rash can be or may not be shaped like a bulls-eye, it can be smooth or bumpy, it may or may not feel warm, and there can be multiple rashes that appear at the site of the tick bite or elsewhere on the body.

Once the infection becomes established, symptoms of Lyme disease vary but may include pain in muscles and joints, fatigue, swollen glands, fever, upset stomach, headache, forgetfulness, sleep disorders, depression, and sensitivity to light and sound, to name a few.

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Additional Symptoms Include:

·  Tick bite (deer tick or dog tick)

·  Rash at bite site and/or at other sites - however, many patients don't remember seeing a rash TOP

hidden under hair  or elsewhere

look like a bruise

bull's eye

multiple rashes

no bull's eye

bull's eye

 

·  Unexplained fevers, sweats, chills

·  Unexplained weight change (loss or gain)

·  Fatigue, tiredness

·  Unexplained hair loss

·  Swollen glands

·  Sore throat

·  Testicular pain/pelvic pain

·  Unexplained menstrual irregularity

·  Unexplained milk production (lactation)

·  Irritable bladder or bladder dysfunction

·  Sexual dysfunction or loss of libido

·  Upset stomach

·  Change in bowel function (constipation, diarrhea)

·  Chest pain or rib soreness

·  Shortness of breath, cough, heart palpitations, pulse skips, heart block

·  Joint pain or swelling

·  Stiffness of the joints, neck, or back

·  Muscle pain or cramps

·  Memory impairment or loss ("brain fog ")

·  Dyslexia and word-finding problems

·  Visual/spatial processing impairment (trouble finding things, getting lost)

·  Slowed processing of information

·  Psychosis

·  Seizures

·  Violent behavior, irritability

·  Rage attacks/impulse dyscontrol

·  Anxiety

·  Depression

·  Panic attacks

·  Rapid mood swings that may mimic bipolarity

·  (mania/depression)

·  Obsessive compulsive disorder (OCD)

·  Sleep Disorders

·  Attention deficit/hyperactivity disorder

·  Autism-like syndrome

·  Twitching of the face or other muscles

·  Headache

·  Neck creaks and cracks, neck stiffness

·  Tingling, numbness, burning or stabbing sensations

·  Facial paralysis (Bell's palsey)

·  Eyes/vision: double, loss, blurry, pain, increased floaters

·  Ears/hearing: buzzing, ringing, ear pain

·  Dizziness, poor balance, increased motion sickness

·  Lightheadedness, wooziness, difficulty walking

·  Tremor

·  Confusion, difficulty in thinking

·  Difficulty with concentration or reading

·  Forgetfulness, poor short term memory

·  Disorientation: Getting lost, going to wrong places

·  Difficulty with speech

·  Mood swings, irritability, depression

·  Disturbed sleep: Too much, too little, early awakening

·  Exaggerated symptoms or worse hangover from alcohol

·  Heart murmur or valve prolapse

·  Excessively itchy skin

·  Hands and/or bottom of feet ache

·  Transient muscle pain which jumps around the body.

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Early Detection: 

Virtually everyone involved with Lyme disease agrees that early detection and treatment of Lyme disease significantly improves the chance of a decent recovery. Some experts describe a window of opportunity following infection when treating the disease with antibiotic therapy can result in a high cure rate and lessen the chance of chronic, long-term problems. Although not proven, some suggest that this window of opportunity lasts up to six to eight weeks. TOP

Unfortunately, receiving a Lyme diagnosis followed by adequate treatment can be difficult. It has been reported that it takes an average of 22 months and seven doctors for the average Lyme patient to be diagnosed with a Bb infection. This follows the fact that many people infected with Lyme disease do not remember being bitten by a tick, which can further delay treatment. The inability to diagnose and treat Lyme disease in a timely fashion may be adding to the number of patients who suffer from chronic symptoms.  It is estimated that as many as 15 to 20 percent of Lyme patients suffer from persistent and chronic symptoms.

Treatment:  Lyme disease is a bacterial infection and like other bacterial infections it is treated with antibiotics. Antibiotics are administered orally, with intramuscular (IM) injections, or intravenously (IV) through the veins. Combinations of these delivery methods are common. This multiple or "shotgun" approach to antibiotic therapy is used in hopes of affecting the Bb organism in as many ways as possible. TOP

Lyme patients often ask, "Why am I affected by symptoms different from other Lyme patients?" Another question is, "Why won't an antibiotic that works for someone else work for me?" Just as no two Lyme patients appear to be affected by Lyme bacteria in the same way, a patient's response to antibiotic therapy is highly individual, too. We don't know exactly why this is so, however, some reasons may be:

1. Different strains of the bacteria react differently to each antibiotic.

2. The length of time that the infection remained untreated can affect the response.

3. So too can the amount of time between the onset of symptoms and treatment.

4. Also, the location of the Bb organism in the body.

5. Co-infections (see below).

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Testing:  The diagnosis of Lyme disease remains clinically based or based primarily on symptoms alone. This is because there is no common test available that can accurately rule out or confirm Lyme infection. Amazingly, the lack of a common test also means that medical science cannot precisely determine whether someone is cured of Lyme disease. This situation leads to contradictory treatment guidelines that can lead to more guesswork than what would ideally be good for patients.  Actual treatment for Lyme disease is less than exact which may lead to arbitrary coverage being determined by health insurance companies.  

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Current testing for Lyme disease mainly includes testing for antibodies to the Bb organism. This results in partial guesswork where false positive results and false negative results are common. The ELISA and Western Blot tests are the most common antibody tests for Lyme disease. The Lyme Urine Antigen Test (LUAT) is a newer antibody test that is also being used by Lyme physicians but not in New York. 

A more accurate and somewhat more expensive test is the Polymerase Chain Reaction (PCR) test. It is designed to confirm that Lyme bacteria are present. A positive PCR test almost always guarantees that Lyme disease is present, depending on the accuracy of the lab performing the work. However, because it can be difficult to isolate the Bb organism's DNA, a negative PCR test does not eliminate a Lyme disease diagnosis.

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Lyme disease is complicated and confusing. Possibly due to the degree of complication, medical science can't agree on the diagnosis and treatment of Lyme disease and its coinfections. This leaves Lyme patients and their families with more difficulties trying to understand tick-borne illnesses.  Although it is not easy to learn about Lyme disease, patients are left with little choice other than to educate themselves.

Areas of concern as they relate to Lyme disease:  

Co-infections:  TOP 

Co-infections can include more than one strain of the Bb organism and may include the tick-borne disorders of Babesiosis, Ehrlichiosis, Bartonella, Mycoplasma, Anaplasmosis and so on. Babesiosis, caused by a protozoa and Bartonella and Ehrlichiosis are bacterial infections and all can present Lyme-like symptoms.   Treatment for co-infections may require different antimicrobials than medicines used for Lyme disease. Information on co-infections is relatively new and new discoveries could be made at any time. For this reason all Lyme patients, both new patients and those with established, long-term symptoms may want to request additional tests or tick panels that include co-infections if they have not already been performed. Unfortunately, no current test is said to be able to accurately determine which organisms are present. This means that a diagnosis of the presence or absence of infection from tick borne disease depends on a clinical evaluation, where the blood tests may or may not indicate the reality and the doctor must evaluate the risk factors, symptoms, etc, in addition to laboratory tests.  Additional re-testing may be required and also may be beneficial to help determine a patient's infective status.

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The Politics of Lyme Disease:  

One of the more perplexing questions about Lyme disease is why a three to six week course of antibiotics won't eliminate the disease for everyone. Before we speculate on how the bacteria evades the body's defenses we first have to look at the politics of Lyme disease to see why Lyme patients often have difficulty receiving adequate antibiotic treatment.

Some health care professionals are more tradition-bound and conservative in their approach to Lyme disease. They have adopted protocols for treating Lyme disease that don't go much beyond relatively short-term antibiotic therapy. This group believes that in almost all cases just one or two courses of oral antibiotics are all that are required to eradicate the bacteria. They believe that persistent, chronic Lyme symptoms are not the result of an ongoing infection in the body. They believe that what appears to be a Lyme infection is probably the result of a dysfunctional auto-immune system response or some other process occurring in the body. TOP

Others-especially those physicians who remain on the frontline of the long-term treatment of Lyme patients-believe that Lyme bacteria are not always eliminated by short-term courses of antibiotics. They believe that this is especially true if the disease went undiagnosed and untreated for months or years following infection.

Further, this latter group believes that the Bb organism can persist through months and even years of antibiotic therapy, depending upon a wide range of individual factors relating to the patient and to the particular strain(s) of bacteria the patient contracted.  In fact, Dr. Benjamin Luft's recent work, reported in 2008, proved that a virulent strain of Bb exists. 

The survival characteristics of the bacteria themselves play a crucial role in Lyme bacteria's persistent longevity.  As previously mentioned, it is believed that Lyme bacteria can shift to a dormant state by entering and residing in a human cell or by encapsulating itself in the body's protein. Some believe that this has the effect of neutralizing the body's defensive mechanism and the offensive mechanism employed by antibiotics.

If it is true that Lyme bacteria can evade antibiotics by shifting to a dormant mode this has serious consequences for the diagnosis and treatment of chronic, persistent symptoms.  Specifically, this means that conservative treatment protocols, calling for short-term courses of antibiotics, could actually prolong some cases of Lyme infection. If chronic Lyme symptoms are the result of an active, late-stage Lyme infection, any delay in full and comprehensive antibiotic treatment may have devastating results for a Lyme patient.

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