Knowing the Truth about Lyme Disease Could Save Your Life or Someone That You Know


People often think of Lyme Disease as being an “East Coast” ailment; something that is a nuisance for Hamptons-goers and avid trail hikers, but otherwise not a real cause for concern.

However, did you know that ticks known to carry Lyme disease have been identified in all 50 states and worldwide and can have serious or even fatal effects?

Here’s what you must know about Lyme disease – it could save your life!

How Lyme Disease Got Its Name – and it’s not a flavor:

“In the early 1970’s, a mysterious illness was discovered among children living around the town of Lyme, CT. What was first diagnosed as isolated cases of juvenile arthritis, eventually became known as Lyme disease, one of the most misunderstood and controversial illnesses of our time.

“Today, many of those untreated will suffer chronic debilitating illness.

“Some unknowingly will pass the disease on to their unborn children.

“Many will lose their livelihoods, and still others, their lives.

“Difficult to test accurately, tens of thousands of people go undiagnosed or misdiagnosed.

“The Centers for Disease Control admits that more than 400,000 people may acquire Lyme disease each year, a number ten times greater than AIDS and West Nile Virus combined.

“And yet, the medical establishment–with profound influence from the insurance industry–has stated that the disease is easily detectable and treatable, and that “chronic Lyme” is some other unrecognized syndrome or a completely psychosomatic disorder.”1

Meet Lyme Disease…Syphilis’ Ugly Cousin

Lyme disease is an infectious disease caused by a corkscrew-shaped bacteria, (spirochete – spy-roh-keet) called Borrelia burgdorferi. There are also 16 genospecies of Lyme disease spirochetes worldwide of which 7 have been implicated as being human pathogens. Another spirochetal disease you may be familiar with is Syphilis which is caused by the spirochetal bacterium Treponema pallidum. There are reports that, like Syphilis, Lyme disease may be sexually transmitted.

There are over 100 strains of Borrelia in the U.S. and over 300 worldwide. Ticks don’t need a passport to travel! Some strains are considered wimpy and others virulent – coupled with how each person’s unique immune system responds to the infection. This diversity in Borellia is believed to cause the antigenic variability of the spirochete and its ability to evade a hosts immune system and antibiotics, leading to a chronic infection – chronic Lyme disease.

The Lyme spirochete can cause infection of multiple organs – the brain, heart, joints, nervous system and other body organs – and because of this, produce myriad symptoms (what is particularly insidious about the disease is that symptoms can change constantly, e.g. joint pain may migrate from your knees to your neck to your hip, etc.; you may have blurred vision one month, gastrointestinal problems another, and anxiety or depression a third or all at once).

Lyme disease is a clinical diagnosis. Lyme disease mimics many other diseases and should be in the differential diagnosis of any difficult-to-diagnose multi-system illness such as the following that patients are often misdiagnosed with: rheumatoid arthritis, ALS, chronic fatigue, fibromyalgia, lupus, multiple sclerosis, depression or psychiatric illness.

A great many sufferers are told that they are not sick and that they “don’t look sick”; rather, it is “all in their heads” and that they should “see a psychiatrist”.

Tick, Tick, Tick, Tock

Ticks are so small and hard to detect (some the size of a poppy seed) that most people who get Lyme disease do not recall being bitten.

As well, many people do not develop the characteristic rash – the “bulls-eye” rash (erythema migrans (EM)) is what most people are familiar with when they think of a dermatologic manifestation of early-localized Lyme infection. This rash is actually not the most common seen with Lyme, but rather atypical rashes are. You do not have to have a rash or have seen a rash to have contracted Lyme disease, although an EM rash is characteristic of Lyme and does not require further confirmation prior to treating for Lyme disease.

Ticks are carried by deer, birds, mice, rabbits, squirrels, and other wildlife and domestic animals. Lyme Disease is most often transmitted to a host by ticks, but all biting blood-sucking insects can transmit the disease, e.g. mosquitoes.

Ticks often spend the bulk of their lives on or near the ground. Ticks are not able to run, hop, or fly, thus, ticks must find a perch, typically a tall piece of grass or a man-made structure like a fence or the side of a building, in order to wait for a suitable host to pass by. When a host passes by, the tick will drop from its perch, or stretch out in an attempt to snag the passerby. Ticks are adept in finding a potential host because they use specialized senses to pick up vibrations, host odor, or exhaled carbon dioxide. They are also capable of detecting shadows of passing animals or humans.

Ticks that have only been attached a short time can transmit disease!

The Best Kept Secret: Routine Tests Are Very Unreliable

“The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.

“The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity. {Yet, this is the test used most often by doctors, and patients who are not positive are denied diagnosis and treatment.}

“Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.

“When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.”2

Ticks Are Carriers Of Other Diseases – This is no easy ride!

Ticks can also transmit other organisms along with Borrelia – think of a tick as a clearing house for infectious organisms. Here are some of the organisms that a tick can transmit: Babesia, Anaplasma, Bartonella and Erlichia. If you test positive for any of these coinfections, it is highly probable that you are also infected with Borrelia. Another bacteria that ticks can transmit is Mycoplasma (there are different species, e.g. M. Fermentans).

What To Know About Treating Lyme Disease

“There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.

“Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free. Relapses occur and retreatment may be required. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured.”3

Most doctors know little to NOTHING about Lyme disease. Therefore, if you have Lyme disease, or suspect Lyme disease, you need to see a Lyme Literate Medical Doctor (LLMD). However, LLMDs are hard to come by. I have listed resources below where you will be able to find an LLMD, hopefully either in your area or nearby.

STEP 1: Visit the California Lyme Disease Association (CALDA) for more information on how to lesson your risk of infection and what to do if you are bitten by a tick or suspect that you have been.

STEP 2:RESOURCES:

For more information on Lyme disease and to find a Lyme Literate Doctor (LLMD):

International Lyme and Associated Disease Society
www.ilads.org

CALDA
http://www.lymedisease.org/

Lyme Disease Association
www.lymediseaseassociation.org

Time for Lyme
www.timeforlyme.org

2 GREAT LYME DISEASE FORUMS
http://www.lymenet.org/

http://www.mdjunction.com/lyme-disease

IGeneX, Inc. (best lab to test for Lyme disease – have most sensitive and accurate tests)

REFERENCES:
1. Under Our Skin
2,3. International Lyme And Associated Diseases Society (ILADS)

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