Imagine a bacterial infectious disease which can imitate 300 or more other illnesses, affect multiple organ systems at once, disseminate to almost all areas of the body, or move around to cause symptoms in any part of the body over a long period of time. Unlike many infectious organisms which can be easily be seen in the blood and in sites of infection, the bacterium that causes this disease is seldom seen in the blood and if isolated, nearly impossible to grow in a laboratory culture dish. This germ can generate widespread inflammation that causes excruciating pain and damage throughout the body but the inflammation is mostly invisible. With the exception of the well known “bulls eye rash” seen around a tick bite in about 30% of Lyme disease sufferers, there is little to no swelling, abnormal rashes, or pus formation usually associated with other kinds of infection. One of the blood tests commonly used to detect this disease is designed to pick up evidence of antibodies formed by the immune system in response to infection. Even though a person may be seriously ill with this disease, the blood antibody test is often negative because his immune system is not generating enough antibodies to be detected. In other words, his immune system is not recognizing the presence of an infection, and is not fighting it. It is not unusual for the sick person to not even have a fever.
The name of this unusual bacterium is Borellia Burgdorferi, a corkscrew shaped spirochete which resembles another bacterial spirochete responsible for the disease known as Syphillus. The Borellia organism is transmitted by the bite of several known species of ticks (most commonly deer ticks) and possibly other kinds of biting insects such as flies and mosquitoes. The disease is named after a town in Connecticut where it was first identified in the United States in the early 70s. Though generally assumed to be confined mostly to the Northeast and upper Midwest, Lyme disease is now appearing more and more frequently all over the country and is well on it’s way to becoming a world wide epidemic.
The Lyme spirochete is a nasty booger indeed. The corkscrew shape allows it to drill itself deeply into joints, muscles and nerves where it can hide from infection fighting white blood cells normally found circulating in the blood. Once deeply entrenched in these locales the spirochetes cause chronic arthritis (joint inflammation and pain), myalgias (muscle pain and weakness), neuralgias (peripheral nerve pain), brain encephalopathy (headaches, dizziness, mental malfunctions), and a form of meningitis (neck pain and stiffness). Lyme bacteria can also invade the heart, kidneys, respiratory system, digestive tract, and even the eyes. Because of its effect on the nervous and musculoskeletal systems, Lyme disease most frequently causes overwhelming physical and or mental fatigue, along with deep and widespread pain, the extent, variety, and intensity of which can be very difficult to describe.
I have put off writing this document for a long time because of my reluctance to risk coming across in a complaining spirit as I attempt to articulate my experience with the excruciating pain of Chronic Lyme disease. Never before in my life have I experienced pain as intense, as widespread throughout my body and in so many variations as I have since my Lyme disease got serious about a year and a half ago. Once I sat down to write all the qualitative adjectives I could think of describing the pain. I began with the usual—stinging, burning, shooting, aching, etc. and ended with the more unusual—gravelly, grinding, crawling, salty, smooth, electric shocking, chemical shocking, pulsing, vibrating—on and on. I got up to 35 variations before I ran out of adjectives and had to give up. There were still qualities of my pain that simply defied description. I had to find other ways to describe it—“Japanese beetles crawling across my eyelids”, “my head and face wrapped tightly with elastic tape to keep it from exploding”, “head feeling like a beehive”, “sensations of large wound scabs being pulled off my legs with adhesive tape”, “barbed wire strung through and wrapped around every muscle in my arms, legs, and torso and every time I moved something was jerking it”, “a huge invisible elastic sock covering the lower half of my grit covered body, squeezing it until the grit ground through my burning skin”, ”arm, rib, and skull bones feeling like half healed fractures”. Sometimes when I felt random stinging sensations under the skin in widely dispersed areas of my body, it became easy to visualize those corkscrew shaped spirochetes drilling their way through nerves and muscles. When one puts this perspective of pain up against the oft asked question in hospital emergency rooms—“Describe your pain on a scale of 1 to 10, one being no pain and 10 being the worst pain you have ever had”, it all sounds so very stupid!
One of the more interesting and insidious characteristics of the Borellia organism is its ability to change from the spirochete (cell wall) form to a cell wall deficient form (sometimes called an L-form). The cell wall deficient form is more resistant to attack from the body’s immune system and antibiotics which may be thrown at it. There are several classes of cell wall destroying antibiotics (generally the penicillin and cephalosporin derivatives) which if used, may cause the infection to worsen and become more difficult to treat because of the spirochetes’ capability of morphing into the cell wall deficient form in order to escape the antibiotics’ effect. For this reason, antibiotic treatment of Lyme disease may need to be applied selectively and strategically over a longer period of time than is recommended for many other infectious conditions. The other form taken by the Borellia is a cyst form which is nearly impossible to kill with antibiotics. The cysts can lie dormant in body tissues for months or years and immerge later as an active cell walled or cell wall deficient form and cause a relapse long after antibiotic treatment has stopped.
Some of the most recent and “cutting edge” research of Lyme disease has revealed other interesting characteristics of these evil critters. Lyme spirochetes are now believed to be capable of screwing themselves into lymphocytes and phagocytes (white blood cells), converting to cell wall deficient form, and combining their DNA with the DNA of the white blood cell. This means in effect that the infection fighting capacity of the white blood cell has been hijacked and that the white blood cells now become antagonistic and confused into attacking healthy tissue. This may be an explanation of why chronic Lyme disease often appears to behave as an autoimmune disease like Multiple Sclerosis, Lupus, or Rheumatoid Arthritis. Other leading research has uncovered evidence that another escape tactic used by Borellia organisms is to form biofilms within body tissues. Biofilms are clumps or congregations of the infectious organisms with cell wall deficient or cystic forms in the center of the clump and more active spirochetes on the outside. Killing them is in effect like peeling an onion. Pulsed application of different antibiotic classes over an extended period of time combined with drugs designed to break up or inhibit formation of biofilms, and various herbal and or nutritional supplements intended to modulate the immune system are being found to be the better approach to dragging down this vicious enemy.
Currently there is major controversy raging within medical circles about how to most effectively diagnose and treat this horrible disease. One side says that Lyme disease is rare in most areas of the country, and is easy to identify and treat. The other side says that Lyme disease is a very complex illness to diagnose and treat, widespread throughout the country and world, and is on the increase. Research is still being done and much is yet to be learned. Currently there is no laboratory test considered reliable enough by its self to rule out or confirm a Lyme disease diagnosis. Too many doctors are misdiagnosing Lyme disease sufferers with labels such as “Chronic Fatigue Syndrome”, “Fibromyalgia”, or “Anxiety Disorder”. Some doctors appear to not be recognizing the existence of chronic Lyme disease because they fear discipline by medical review boards if they exceed the inadequate treatment guidelines handed down by CDC (Center for Disease Control) or IDSA (Infectious Disease Society of America). Many health insurers refuse to pay for extended antibiotic treatment of Lyme disease considered necessary by LLMDs (Lyme Literate Medical Doctors). Other doctors appear unwilling to spend the time and energy to do the medical detective work necessary to properly diagnose and treat suspected Lyme disease. It is easier and more profitable to deny Lyme disease and to send patients back out their doors with prescriptions for palliative medications. Meanwhile there are possibly hundreds of thousands of sick and confused people in this country, undiagnosed or misdiagnosed, and suffering in desperation.
This is nothing less than a huge moral travesty! It is not right! Both patients and doctors are falling through the gaping holes in this country’s hopelessly broken and dysfunctional health care system. It has got to be fixed! As an individual I feel so small and inadequate to consider taking on this monster. But I am going to try. I will begin by joining local support groups for Lyme disease, MS, and Fibromyalgia. There already is talk of arranging an informal neighborhood picnic where a few doctor friends will be invited. Gently and thoughtfully we will breach the subject. At some time a couple of persons’ stories of struggle and recovery from Lyme disease will be published in the local newspaper. Sound scientific research on Lyme disease has been done and is still forthcoming. There are doctors out there who care and who will likely come through if given a little encouragement. We will overcome with God’s help and direction.