Lyme 101: Testing

There are two types of tests that are typically used to test for Lyme disease: the ELISA and the Western Blot. They are considered indirect tests in that they look for antibodies which are generated by the body’s immune system when a person has Lyme (B. burgdorferi) disease.

Patients with persistent Lyme Disease and other TBDs seldom have a positive ELISA test, possibly because they have ceased to produce the antibodies detectable by the test. The TBDA says that the ELISA test is only about 30-60% accurate. One problem, according to TBDA is that the ELISA test is not based on the specific Lyme bacteria strain that is most useful for accurate diagnosis. While a positive ELISA test is a reasonably reliable indication of infection, a negative test is useless.

Although it still misses a percentage of people with active Lyme, the Western blot test for Lyme Disease (LD) often shows infection when an ELISA test does not. According to the TBDA, the U.S. Centers for Disease Control (CDC) have set strict criteria for considering a Western blot test as positive for LD. These criteria were established for statistical analysis of the spread of the disease and were not intended to guide doctors in their diagnosis and treatment. The CDC surveillance criteria miss many people with LD. Doctors who use only the CDC guidelines to decide whether or not to treat leave many infected people without treatment. Even if the test results are not positive by CDC standards, any positive Lyme-specific “bands” are useful indicators of infection. Another test, PCR analysis, looks for the DNA of the Lyme bacteria in blood, urine, or tissue. Multiple tests are usually required before a sample is obtained that contains the bacteria. However, in recent years PCR testing has become extremely reliable when positive. Most doctors are unaware of this test.

Sources: TBDA, Igenex

Lyme 101: Symptoms

The clinical symptoms of Lyme disease vary among individuals at initial presentation and during the course of an infection, ranging from a relatively benign skin rash to severe arthritic and neurological symptoms. Lyme disease is called “the great masquerader” because of its ability to mimic other illnesses. Early in the infection patients may have flu-like symptoms including headache, stiff neck, fever, muscle aches, and fatigue. Serious multi-systemic problems may start later. Late symptoms include: neurologic problems, dizziness, memory and concentration impairment, muscle weakness, joint pain and swelling, mood disorders, and heart disease. Symptoms may develop quickly or not until many months or years later as the spirochete can evade the immune response and remain dormant in the host for long periods of time.

JOINTS AND MUSCULOSKELETAL SYMPTOMS

Joint pain and/or swelling
Stiffness of joints, back, neck
Muscle pain, cramps
Headache, persistent and severe
Jaw pain

NEUROLOGICAL SYMPTOMS

Twitching of facial or other muscles
Numbness and tingling
Weakness or partial paralysis
Light-headedness or dizziness
Poor balance, difficulty walking
Burning and stabbing pains
Restless legs
Memory loss (short or long term)
Confusion (difficulty with thinking)
Speech difficulty (slurred or slow, word finding)
Seizures/stroke symptoms
Blurry or double vision, sight change
Sensitivity to light and flashing lights
Sound sensitivity
Tinnitus (ringing)

PSYCHOLOGICAL SYMPTOMS

Mood swings, irritability
Unusual depression
Panic/anxiety attacks
Aggression/rage
Obsessive-compulsive behavior
Paranoia
Suicidal thoughts

RESPIRATORY/CIRCULATORY SYMPTOMS

Recurring bronchial infections
Shortness of breath
Chest pain/rib soreness
Heart palpitations, murmurs, valve prolapse, heart attack

OTHER SYMPTOMS

Insomnia or sleeping too much
Night sweats or chills
Swollen/painful lymph glands
Chemical sensitivity/increased allergic reactions
Sore throat
Weight gain/loss
Skin changes/nodules under the skin, dryness

Source:
National Capital Lyme Disease Association (NATCAPLYME)

 

Lyme 101: Rashes

rash2Lyme disease has long been associated with the appearance of a circular rash radiating out from the site of an infected tick bite, known as an erythema migrans (EM) rash. There are some difficulties with this. First, scientists believe that some strains of Lyme do not produce a rash at all. Second, ticks often bite the scalp, behind the ears, in the middle of the back, or other places that are hard for a patient to inspect. Finally, not all EM rashes look like the classic “bull’s-eye” rash since many other variations are now being reported.

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In fact, Harvard Medical School professor Dr. Jonathan Edlow reported in 2002 that the target or “bull’s-eye” is no longer considered the most common type of rash associated with Lyme disease. EM rashes can be uniform in color, oozing, blistered, scaly, and in a variety of shapes. They can range from a pink color to shades of deep red, purple, or brown. Occasionally an EM rash is warm to the touch or burning, itching, or painful. A so-called mini-EM rash with a diameter of 5 cm or less has been reported in Europe. Some doctors think that multiple rashes appearing on different parts of the body is a sign of rapidly-spreading infection.

rash dark skin

The EM rash may also appear as a dark bruise. Frequent misdiagnoses include ringworm, cellulitis, and spider bites. According to the Centers for Disease Control, the EM rash is noticed in 70 to 80 percent of persons who contract Lyme disease. However, other studies have suggested that this percentage may be as low as 50 percent or less. ILADS reports that fewer than 50% of people with Lyme disease recall the rash. rash1EM rashes may appear in a few days or several weeks after the bite and may recur with antibiotic treatment.

Co-infections of Lyme can also cause rashes. Rocky Mountain Spotted Fever is famous for the spotted rash it produces on the hands and feet along with fever and virus-like symptoms. RMSF can be fatal if treatment is not given promptly. Bartonella or cat scratch disease can cause pink or purple streaks in the skin which resemble stretch marks. Other dermatological manifestations of these infections are possible.

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Although not every tick-borne infection causes rashes, an EM rash means you have Lyme disease. Therefore, seek immediate medical care if any kind of rash appears anywhere on the body after exposure to ticks. This way your doctor can take a look at it, and put you on antibiotics immediately before the disease moves into the more chronic stage.

rash4

Taken from NatCap

Lyme 101: Proper Tick Removal

If you find a tick on your body, it is extremely important to not only remove it as soon as possible but also to do it properly. Here is a good video to best understand removal technique. Please note that tweezers that have sharp points need to be used rather than ones that have blunt points.

Lyme 101: Precautions and Prevention

The best way to avoid long-term consequences of Lyme and tick-borne illnesses is to prevent tick bites altogether. Use the following tips to minimize your exposure to disease-carrying ticks:

    1. Avoid tick-infested areas when possible. Stay in the center of trails, avoiding contact with overhanging grass and brush, while walking in the woods. Trails are less attractive areas for ticks to live than dense underbrush.
    2. Wear light colored clothing, long sleeves and pants, and tuck pants into socks. Wear a hat and tie back long hair to make it harder for ticks to attach to your scalp.
    3. When walking or working in the woods for an extended period, use duct tape wrapped inside out around the ankles to trap ticks attempting to crawl up your legs.
    4. Wear EPA-approved repellants appropriate for adult skin or children. Follow the manufacturer’s instructions for application carefully; some repellants are designed for application to clothes and equipment only.
    5. When coming in from outside activities where ticks may exist, put clothes in the dryer set on high heat for at least an hour. Ticks cannot survive the dry heat. They can survive exposure to hot water, so skip the washing machine and expose the clothing to the high heat of the dryer first.
    6. After spending time outdoors where you might have been exposed to ticks, make sure you get undressed in a dry bathtub so you can spot ticks that fall off clothing. Do a thorough tick check upon returning inside and for several days following exposure.
    7. Immediately shower using a washcloth to knock off any unattached ticks and DO A ROUTINE TICK CHECK on yourself and children.
    8. Check dark, moist areas, hair and scalp, behind ears and knees, elbows, underarms, skin folds and the groin area.
    9. Check bedding for several days following exposure for ticks that drop off.

      Though it may take time to institute tick checks into your family routine, over time it can become as simple as daily tooth brushing.

REMEMBER

    1. Daily full-body tick checks of all family members are your first and most important prevention against Lyme and tick-borne diseases.
    2. If you are diligent about checking for ticks, there is no need to limit or abandon your usual outdoor activities.
    3. Other possible tick-borne co-infections found in our area include bartonella, babesiosis, Rocky Mountain Spotted Fever, ehrlichiosis, and tularemia.
    4. Young children have a higher incidence of Lyme disease than adults due to more outdoor activities.
    5. If you have ever had Lyme disease, you are not immune and may contract the disease again upon re-exposure.

Taken from the website of: National Capital Lyme Disease Association

Lyme 101: History of Lyme Borrelia

Courtesy of Living Lyme

Lyme disease has been around for centuries. The first case of Lyme disease was recorded in 1883 in Germany. In 1909 Arvid Afzelius presented his research on the ring like rash (erythema migrans) which would later become known as the tell-tale rash of Lyme disease. He published his work in 1921 speculating the origin of the disease was from ticks and connected it to joint problems. Throughout the 20’s and 30’s evidence was found to link the disease to joint, neurological, heart, and psychiatric problems.

It wasn’t until 1975, thanks to a group of concerned mothers in Lyme Connecticut, that the first cases of Lyme disease were recorded in the United States. There was an extraordinary amount of juvenile rheumatoid arthritis diagnosed in this small community. This would later become ground zero for the epidemic we now know as Lyme disease.

In the 1980’s, William Burgdorfer helped Jorge Benach investigate an outbreak of Rocky Mountain Spotted Fever which led to his discoveries linking Lyme disease and its many co-infections to ticks. Dr. Burgdorfer had been studying tick-borne diseases for 30 years. He was the first to show that Lyme spirochetes could be found in ticks throughout this country. It was due to his discoveries of the Lyme spirochetes that they were named after him, now known as Borrelia Burdorferi. Although several new strains of the Borrelia species have since been discovered, this strain is still the most common spirochete to cause Lyme disease.

There is much controversy surrounding the diagnosis and treatment of this disease, and there is still a need for more research to learn more about how this disease works and the best way to prevent it and treat it.

Source: Living Lyme

Lyme 101: Forms of Lyme Borrelia

From Living Lyme

“The spirochete that causes Lyme disease has three times more useful genes than Syphilis, and uses its evolutionary advantage to evade detection and survive destruction by both the immune system and antibiotics. It is both stealthy and insidious.” -Tom Grier.

The paragraphs that follow are an attempt to explain in simple terms the basic functions of how this infection works and why standard treatments fail.

Although Lyme disease can be transferred in many ways, ticks are a prime host for transfer to humans due to the amount of time they feed (typically for 1-3 days although infection can occur immediately). Tick feeding practices are also designed to counteract host immune responses. This gives the Lyme bacterium time to familiarize itself with the host’s DNA and immune system; allowing it to travel within the bloodstream undetected.

The Lyme spirochete (Borrelia species) is a uniquely opportunistic bacterium with an unusual ability to self-preserve. It acts more like an exceptionally intelligent protozoan parasite than a common bacterium. It is highly motile, and can penetrate blood vessels easily. It uses the bloodstream to quickly find opportune sites to hide from immune responses and prefers to colonize in collagenous tissue such as the brain and central nervous system, joints, organs, etc….

Once initial infection occurs, the spirochete takes the opportunity to activate genes that will ensure its ability to survive and thrive within the new host. One way in which it does this is by altering the expression of surface proteins further confusing the host immune system. These surface proteins are what kick-starts the immune system into creating antibodies. Essentially, the host immune system can’t keep up. Once isolated within the brain it can divide and change many times into an undetectable strain that the peripheral immune system will simply ignore. The result is an infection that can quietly inhabit the brain and other tissues for years or decades.

This is why blood tests are unreliable. If our immune system cannot detect the infection to create antibodies, or if the infection is in a non-active state, there is no way of finding a positive result in a blood sample. Therefore, it is especially difficult to find a positive test result in someone who is in late stage Lyme infection. Clinical diagnosis remains the most important way of determining if someone is infected with the Lyme spirochete. It is crucial once diagnosed with Lyme disease and treatment has begun, that treatment is not stopped prematurely. Relapses can be much more dangerous and difficult to eradicate than the initial treatment.

The division time and life cycle of Borrelia spirochetes is longer than typical bacteria, which is why standard treatments fail. The Lyme bacterium can become metabolically inactive for long periods of time making antibiotics ineffective as they can only kill bacteria when they divide. No antibiotic can kill a bacterium that is metabolically inactive and spirochetes are well known to have mastered this form of survival. Many naturally occurring simple bacteria, such as the bacteria that cause acne, successfully survive antibiotic treatment. Simultaneously killing all the surviving bacteria in late infection with short courses of antibiotics is impossible and may not even be possible with extended courses of antibiotics.

In its basic form, the Lyme Spirochete is spiral shaped and can literally bore deep into tissues, hide, and colonize. When it senses “danger”, such as an immune response or antibiotics, it has the ability to change its structural identity into two different forms to ensure survival.

The L-form occurs when it discards its cell wall and integrated surface proteins. This form often evades the immune system and many antibiotic treatments, and is capable of intracellular infection. In some cases, it can trigger an auto-immune response which then attacks our own tissues.

The cystic form creates new challenges for the immune system which can be ineffective against all various defense mechanisms of this bacterium. It mimics good cells in the host body so it can remain invisible, similar to putting on a costume. This form is resistant to antibiotics, does not present antigens to the immune system, and can shift into a reproductive state while encysted. Quite simply, the Lyme spirochete is a survivor at all costs.

Once conditions improve, the Lyme bacterium can change back into the spirochete form and “re-infect” the host. It can change forms within 1 minute of expression and survive up to 10 months before reconversion. The preferred form of the Lyme spirochete is dependent on its physical surroundings and environmental cues. It can also survive both freezing and thawing and successfully infect the host 12 months of the year.

This unique ability to shift forms and hide from our natural immune responses and antibiotics makes it difficult, if not impossible, for some to achieve full recovery. This is why relapse rates are so high in Lyme patients. It also explains why some people do not show symptoms right away, and may not show symptoms for weeks, months, or years after the initial infection. The Lyme spirochete is a highly evolved pathogen with many mechanisms of evasion and survival. Believing this disease can be easily eradicated and cured is unfounded and dangerous.

Courtesy of Living Lyme

Lyme 101: All About Ticks

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What are Ticks?

Ticks are tiny crawling bugs in the spider family that feed by sucking blood from animals. If the animal is carrying Lyme disease spirochetes, the tick sucks them up as it feeds and they multiply in the tick’s gut. The tick may then transfer them into the next animal it feeds on.

Where Do Ticks Live?

Ticks prefer humid environments. Adult ticks climb up grasses and bushes on the edges of trails to wait for an animal to pass by. In hot, dry weather they are less active. Immature ticks are often found in leaf litter under oak trees. Nymphs may climb up onto downed logs.

What is the Tick Life Cycle?

Ticks have three life stages: larva, nymph and adult. To see a diagram of the tick life cycle go to: TBDA. In each stage, ticks feed by sucking blood from animals. Then they drop off, enter a dormant period, and molt to become the next stage.

Most Lyme disease is transmitted by nymphal ticks, which are smaller than a poppy seed in size and easily escape detection. Their bite is painless. The human is at greatest risk in the late Spring/early Summer when the nymph ticks are most plentiful.

What do Ticks Feed On?

Adult ticks feed and mate primarily on deer. You may also find adult ticks on your dogs, horses, and other domesticated animals.

Nymphs feed primarily on smaller animals, including squirrels, mice, lizards, rabbits, robins, starlings. Migratory birds play an important role in distributing ticks throughout the country.

What Kind of Ticks are There?

American Dog Tick–Dermacentor variabilis
The American Dog Tick can transmit Rocky Mountain Spotted fever, Tularemia, Ehrlichia, and Tick Paralysis.

Soft Ticks–Ornithodoros

Soft ticks do not have the hard shell and are shaped like a large raisin. Soft ticks carry Tick Relapsing Fever.

Western Black Legged Tick–Ixodes Pacificus

The Western Black Legged Tick is prevalent on west coast. It transmits Babesia, Lyme disease, Bartonella and Ehrlichia.

Deer Tick–Ixodes Scapularis

The Deer Tick is prevalent on East Coast and transmits Lyme disease, Ehrlichia, Babesia, and Bartonella

Brown Dog Tick–Rhipicephalus Sanguineus

The Brown Dog tick carries Q Fever.

Rocky Mountain Wood Tick–Dermacentor Andersoni

The Rocky Mountain Wood Tick transmits Tularemia, Tick paralysis, Rocky Mountain Spotted Fever, Q Fever, and Colorado Tick Fever.

Lone Star Tick–Amblyomma Americanum

The Lone Star Tick is prevalent in the South West and can transmit Rocky Mountain Spotted Fever, Tularemia, and Ehrlichia, Q Fever and Tick Paralysis as well as Borrelia lonestari, which causes a Lyme disease like illness

Pacific Coast Tick–Dermacentor Occidentalis

The Pacific Coast Tick is prevalent in the West and South West. It can transmit Colorado Tick Fever virus, the Rickettsia of Q Fever and Spotted fever as well as the bacterium that causes Tularemia. Known to cause tick paralysis in cattle, horses and deer. Bite wounds are commonly mistaken for wounds caused by the biting of this tick.

What Kind of Bacteria do they Carry?

One tick bite may transmit over a dozen tick-borne diseases including Lyme disease. The species of bacteria among the tick-borne pathogens are diverse. This complicates diagnosis because current antibody tests are species-specific. 15 tick-borne bacterial pathogens have been identified worldwide, including 3 species of Ehrlichia, and 4 or 5 of B. burgdorferi. Scientists have not identified all of the pathogens that ticks may carry. According to ILADS, there are 5 subspecies of Lyme, over 100 strains in the US and 300 strains worldwide.

Taken from the website of Lyme Disease Organization.