Mid-AtlanticLymeDiseaseResourceCenter, LLC

P.O. Box 1261 Brooklandville, Maryland21022

Lyme Disease Information - 2007

Introduction...

Lyme Borreliosis (the technical name for Lyme Disease) is caused by the spirochete Borrelia burgdorferi and is transmitted from the bite of the Blacklegged Tick, also known as the Deer Tick (Ixodes family). Deer Ticks are so tiny that they are easily mistaken for flecks of dirt, freckles or moles. The Deer Tick has 8 legs (e.g., looks like a “freckle with legs”), and belongs to the spider family. In the nymph stage, it is the size of the period at the end of this sentence; in the adult stage it is about the size of a sesame seed. An engorged female adult Deer Tick can be as large as a kernel of corn, similar to an engorged dog tick. Dog ticks have a horseshoe pattern on their backs. Deer Ticks are darker and smaller with no markings.

Where Are Ticks Carrying Lyme Found ?...

Ticks like 90% humidity and are active in the Mid-Atlantic region whenever the temperature is above 35 degrees. That means you can get Lyme Disease year round. The ticks prefer shady, moist areas such as the edges of your yard, stone walls, gardens and low growing plants along pathways where they can detect heat and presence of passing animals--potential hosts--mice, deer, dogs, cats, horses, cows, birds and humans. In the spring, Deer Tick nymphs can be found in leaf litter in wooded areas. There they are picked-up by small animals, including birds. Adult ticks cling to tall grass and brush and wait for warm-blooded hosts to pass by. Maryland is a Lyme Endemic Region. This means that the ticks carrying Lyme and other diseases are everywhere(including your backyard and local parks).

Is Lyme Disease Really A Problem?... My Doctor Says it’s Rare and Easy to Cure…

Lyme and the other tick-borne illnesses (Ehrlichiosis, Babesiosis, Relapsing Fever, Tick-Borne Encephalitis and Rocky Mountain Spotted Fever) are serious, potentially fatal and debilitating diseases that affect livestock, pets and humans. Lyme is by far the most common of these illnesses. There are many more cases of Lyme Disease in Maryland, Virginia and PA than are officially reported. Underreporting is a national problem because state public health officials and the majority of doctors still use unrealistic surveillance criteria to count cases of Lyme and make diagnoses. These criteria were established by the Centers for Disease Control (CDC) in the 1980’s before much was known about Lyme (it was isolated and identified in 1982). Because of this, doctors are unable to report cases of clinical Lyme because such cases may not meet the restrictive CDC surveillance criteria. Worse yet, many doctors still use the reporting criteria as the basis for diagnosis and treatment, even though the CDC has warned doctors that the criteria are to be used for “surveillance purposes only,” [i.e., reporting and counting]. See the CDC web site at

Lyme and Children: Beware the Masquerade...

The youngest victims don’t always present with symptoms accepted by the medical profession as “classic Lyme symptoms” (i.e., bulls-eye rash, arthritis in joints, etc.). Many children (and adults) present with neurologic symptoms early in the course of the illness. Lyme is now known to appear in the Central Nervous System (CNS) within 12 hours of infection. Moreover, because Lyme is a muti-system illness, there are at least 50 different Lyme symptoms listed in current literature.

Major Lyme Disease Issues...

We cannot stress enough: it is imperative to treat LD with ADEQUATE DOSAGES of the recommended antibiotics EARLY, EARLY, EARLY. With Lyme, the longer you have it, the deeper it gets into your system; the deeper it gets into your system, the longer and more aggressive the treatment must be (see below) to control or eradicate the organism. The longer that Lyme goes untreated (or inadequately treated), the harder it is to cure. Lyme bacteria are spirochetes similar to Syphilis. Like Syphilis, Lyme can become dormant for periods of time (years in some cases), sequester inside of cells and the CNS (including the eye), and change forms during the course of an illness. There are peer-reviewed studies that indicate that Lyme bacteria are able to evade host immune systems and antibiotic effects. There are many strains of Lyme bacteria. Different strains have different antibiotic susceptibilities. You can receive infection with one or more strains from the same tick bite. You can also be co-infected with other tick-borne microbes that may not be affected by antibiotics used in treating Lyme. In some cases, this results in chronic, seemingly incurable infection. This is especially possible if older, simplistic treatment protocols are employed.

Diagnosis and Treatment…

If you are bitten, become infected and get a bulls-eye rash, that is all you need for a doctor to confirm (acute) early Lyme infection. According to the experts, it is the only symptom that is 100% diagnostic for the disease. If you have the rash, take photos of it if at all possible. Don’t wait to see if the rash goes away on its own or for the on-set of symptoms. Don’t wait for unreliable lab tests to come back. Current blood tests (ELISA/Western Blot) can provide false negative results approximately 30-50% of the time. A positive test indicates exposure only, not current infection. Early treatment with antibiotics may abort your body’s immune (antibody) response and result in seronegativity (i.e., you have a false negative test result even though you have the disease). Serological tests do not become reactive until several weeks post-infection (some never do). We do not have a lab in Maryland that can perform sensitive, state-of-the-art tests to assist in diagnosis if you do not have a rash. Only 33% of those infected get a rash; most do not remember being bitten by a tick.Because of the unreliable state of current testing, the CDC says that a diagnosis of Lyme Disease must be based on clinical evidence with testsplaying a supporting role.Not all labs can be trusted to provide quality Lyme tests. The labs indicated below offer state-of-the art testing. Give them a call.

What About the “Bulls-Eye” and Other Rashes...

Rashes typically appear 3 days to 3 months following a bite. The rash does not always occur at the site of the bite. There are MANY variations of rash. The rash will go away if untreated, but the infection can hide for months and will be less likely to be curable if effective antibiotic treatment is withheld or not given long enough during the early phase. According to the experts, optimal treatment when just a rash is present is 4-6 weeks of oral antibiotic therapy. Check out the rash photos at the Lyme Disease Foundation website: .

Chronic Lyme Disease Is a Well-Documented Reality...

Chronic LD affects some or many of the body’s systems and does not necessarily test positive with current lab tests. Victims may require months to years of antibiotic treatment, depending on response and effectiveness. Beware of the so-called “Post Lyme Syndrome” (“PLS”) given as an explanation for continued symptoms after treatment. At this time, PLS is purely a hypothetical “condition.” It is used by the insurance industry to justify the denial of treatment benefits to Lyme patients who receive the “standard” 21 - 28 days of antibiotics, yet are still symptomatic. See, “A Proposal for the Reliable Culture of Borrelia burgdorferi from Patients with Chronic Lyme Disease, Even from Those Previously Aggressively Treated,” Infection, Vol. 26, p. 18-21 (1998). See also the information compiled by the Lyme Disease Association at

Minimization of LD Symptoms and Treatment...

It is unfortunate but true that many doctors minimize the strength, prevalence and impact of the tiny Lyme microbe on individuals, families and communities. Chronic Lyme is often misdiagnosed or treated inadequately due to incompetence or lack of expected clinical symptoms, slow response or temporary worsening with effective treatment (the Jarisch-Herxheimer Reaction, see below). Many in the medical profession do not know what a Lyme Herxheimer is or how it manifests. LD patients presenting a classic spirochetal Herxheimer reaction upon initiation of effective antibiotic therapy are often misdiagnosed as having an “allergic reaction to antibiotics” or told that they are “depressed/anxious” and need to see a mental health professional. This phenomenon of denial and ignorance is compounded by the politics and bias surrounding Lyme Disease research and treatment.

What is the Likelihood of Becoming Infected...

Timely and proper removal of the tick is critical. The only studies available suggest that if a tick is properly removed within 24 hours of the bite, infection is usually unlikely. After that, the likelihood increases, if it’s been embedded 48 hours or longer or is not removed intact. Allowing the contents of a tick (i.e., the spirochetes) to come into contact with skin or a bite wound will significantly increase the chances of transmission. An adult Deer Tick has a greater probability of carrying the bacteria. These ticks are larger and easier to spot, but some authorities advise that infection from an embedded adult tick can be transmitted in as little as four hours. Do not crush or separate a deeply embedded tick. Get it removed surgically by a medical professional!

How Should I Remove an Attached Tick...

Despite what you may have heard, it is very unwise and risky to apply a chemical or heat to a tick to get it to “back

out.” Such action can cause the tick to regurgitate infectious bacteria into your bloodstream. It is best to avoid unnecessary movement of the tick and use a pair of fine tweezers to grasp the tick as closely to the skin as possible and gently pull upwards to remove it. Wash the site and put on an antibiotic ointment. Record the site and location and save the tick as described below. If any part of the tick remains embedded, you call your physician immediately for further advice.

Do Yourself a Favor and Save the Tick for Testing...

Your best defense against Lyme Disease is early detection by testing the tick that bit you!

Get it tested as soon as possible, especially if the time it was embedded is unknown and any engorgement is observed or if

the tick was improperly removed or manipulated excessively. The tick should be placed in a plastic bag with a blade of grass or other source of moisture. It should not be killed if it is still alive. As of this writing, Maryland does not offer commercial tick testing. Instead, send your tick specimen to: UCONN Diagnostic Testing Laboratories, 61 N. Eagleville Rd., U-203, Storrs, CT 06269-3203 Tel. 860-486-0808; Fax. 860-486-2737. Also, check out Medical Diagnostic Laboratories () in NJ (877.269.0900) Igenex Lab in California (800-832-3200) also does excellent testing; they have the only commercially available Lyme Urine Antigen test. See their web page at: Beware of the tendency of local practitioners to opt for the easiest/cheapest lab for testing. A few extra dollars spent here is worth the cost.

Symptoms of Lyme Disease...

There are many different symptoms and courses that Lyme can present. Lyme mimics many syndromes and illnesses, including Multiple Sclerosis (many people have been misdiagnosed with MS when they actually had Lyme), Chronic Fatigue Syndrome, Fibromyalgia (is a condition thought to be causedby, among other things, Lyme Disease), Alzheimer’s, Depression, Anxiety, ADD, ADHD, Rheumatoid Arthritis, Lupus and more. See, the websites mentioned above and the publications noted below for an extensive list of them.

Lyme and Pregnancy...

The Lyme infection can be transmitted during pregnancy and perhaps lactation. Fetal death is well documented. Child-bearing/nursing women who suspect being infected should not delay seeking treatment. Lyme Disease can be transmitted through blood transfusions and organ transplants; thus, anyone with Lyme should NOT donate blood or organs. Other possible means of transmission: from the urine of infected animals and contact with infected blood of such animals, including deer meat (cooking, however, kills the bacteria).

What Happens During Treatment...

The information presented below is based on our own experience, reports from scores of Lyme patients, and a compilation of peer reviewed, current research published in professional journals and on the internet. We recommend that you read Denise Lang’s, Coping With Lyme Disease (1997 ed.); Karen Forschner’s, Everything You Need To Know About Lyme Disease (1997); and Polly Murray’s, The Widening Circle. On-line, check out the Lyme Disease Foundation’s

(LDF) web site at the Lyme Disease Network at A 24 hour hotline is providedby LDF at 800-886-LYME.

If I Have Disseminated or Later Stage LD, What Can I Expect ?...

No one knows. That’s the answer. No one knows how quickly you’ll start feeling better, or what you might have to go through to get there. A lot of people simply start to feel better quickly and never realize that Lyme Disease can be traumatic for others. For many people though, it gets worse before it gets better. It can, in fact, get a lot worse before it gets better. It depends on how long you’ve had it, how much of the bacteria has built up, what strain you’ve got, co-infection with other tick-borne microbes and many other factors. The only way to find out is to start treatment. If you’re one of the many lucky people who recover without complications, Great! If not, then you may find some very useful information in this text.

The Lyme bacteria give off chemical toxins. When the antibiotics start killing them, the toxin levels in your body will soar and the symptoms can become intense. Just as with the effective treatment of Syphilis, this is called the Jarisch-Herxheimer Reaction, or Herx for short. Physical symptoms include joint/muscle pain, numbness, swollen joints, a feeling of being on fire, tremors, and a myriad of others if internal organs are significantly affected. The toxins affect your mind as well. Typical symptoms include insomnia, confusion, disorientation, memory loss, depression, anxiety and panic attacks. These will all go away as you get well! As if the toxin effects weren’t enough, another fact about Lyme bacteria is that they grow and reproduce slowly. At first, that may seem like a good thing, except that the antibiotics are generally able to kill them only during certain stages of their life cycle. The end result being that it takes a long time to get well. Usually months. There have been cases of “miracle” cures in just a couple weeks, but these are rather rare. Just don’t give up hope! Keep at it! Keep trying! It takes a long time, but being happy and healthy again is worth it!

The Jarisch-Herxheimer Reaction...

When you first start on effective antibiotics you’ll be in for quite an unpleasant surprise. Within a day or two you’ll feel like you’ve been hit by a fully loaded freight train. Your symptoms, including ones you didn’t even know you had, will flare up intensely. Try hard to tough it out. But if you find that you absolutely positively can’t, and this is not too unusual, ask your doctor about lowering the dose for a while, or pulsing on and off until you get through the worst of it. Sticking on the medications as prescribed, always taking them right on time, is your best bet for getting through it as quickly as possible. Don’t give those nasty little bacteria an inch! This can be really tough, because it takes at least a few weeks, often several months and sometimes longer to get through the brutally hard part.

If, when you start your antibiotics, your symptoms don’t flare severely (including ones you didn’t know you had), then you may have a strain that is resistant to that particular antibiotic. This is one reason that two antibiotics are often used at the same time. It is a judgment call between you and your doctor as to whether the antibiotics are effective and what might need to be done if they aren’t. Or perhaps it’s just that you’re one of the lucky people who get better without all the pain some folks have to go through.

Which set of symptoms, the physical or the psychological, will be the most difficult to handle is entirely up to the individual. Are you more physically oriented? Or are you a thinker? Some people are so happy-go-lucky and full of faith

that nothing at all bothers them. In fact many people are. You can be like them too. Just don’t bother to worry about it! Focus on things you like to do. You’re on the right road. The road to being happy, healthy and normal again!

Is it Contagious? The short answer is: no one knows. Spouses and siblings tend to travel to the same places, so most likely, family infections are caused by infectious bites by different ticks. The long answer is: since it’s a blood-borne disease, as long as you don’t go around biting people and bleeding on them, then no, it’s not. Whether it is possible to transmit Lyme through sexual contact is unknown. As always though, better safe than sorry.