“Many people who unknowingly battle this disease are told their blood work appears normal – but their internal experience is a far different story,” says nutrition expert Joseph Mercola, MD. Lyme is so under-reported that as many 480,000 Americans may be affected, according to the CDC.
This information is reproduced with kind permission from Dr. Mercola's educational website (Mercola.com). It was first published Oct 13, 2012; see footnote* for links to much more.
The Untold Story of Lyme Disease: History, Discovery... Misdiagnosis
Unrelenting pain. Headaches, muscle aches, swollen joints, rashes. Loss of coordination and muscle spasms. Intermittent paralysis. Cycles of disabling symptoms that persist for years, causing ceaseless suffering and frustration for patients and their families.
This is the picture of chronic Lyme disease. And yet, many physicians tell their patients there is "no such thing," referring them to psychiatrists, misdiagnosing them, or even accusing them of fabricating an illness or simply seeking attention.
An award-winning documentary called "Under Our Skin" exposes the hidden story of Lyme disease, one of the most serious and controversial epidemics of our time.
Each year, thousands go undiagnosed or misdiagnosed, often told their symptoms are all in their heads. This film brings into focus a troubling picture of a health care system that is far too willing to put profits ahead of patients. [To view the full film courtesy of Dr. Mercola, click here.]
The History and Discovery of Lyme Disease
Lyme disease rates are escalating at breakneck speed, among humans as well as animals. Today, Lyme disease is the most common vector borne disease in the U.S., far more common and dangerous to the average American than West Nile virus. In fact, there were almost 40,000 reported cases of Lyme in 2009, which by all accounts is a gross underestimate.
The CDC estimates the real number of cases may be up to 12 times higher, suggesting as high as 480,000, making Lyme far more prevalent than AIDS.
The number of Lyme cases reported annually has increased nearly 25-fold since national surveillance began in 1982.
Lyme disease was named after the East Coast town of Lyme, Connecticut, where the disease was first identified in 1975. The disease was first referred to as "Lyme arthritis" due to the presentation of atypical arthritic symptoms. By 1977, the black-legged tick (Ixodes scapularis, also known as the deer tick) was linked to transmission of the disease.
Then in 1982, Willy Burgdorfer, PhD, discovered the bacterium responsible for the infection: Borrelia burgdorferi. The bacteria are released into your blood from the infected tick, while the tick is drinking your blood.
We now know:
• There are five subspecies of Borrelia burgdorferi,
• More than 100 strains in the U.S. and 300 worldwide,
• Many of which have developed resistance to our various antibiotics.
Although many still attribute transmission exclusively to ticks, according to Dr. Deitrich Klinghardt, MD, PhD, one of the leading authorities on Lyme disease, the bacteria can also be spread by other insects, including mosquitoes, spiders, fleas, and mites. This may be the reason so few Lyme sufferers recall being bitten by a tick.
Borrelia burgdorferi is a spirochete, a cousin to the spirochete bacterium that causes syphilis. In fact, they look very similar under a microscope.
B. burgdorferi's corkscrew-shaped form allows it to burrow into and hide in a variety of your body's tissues, which is why it causes such wide-ranging multisystem involvement.
The Invisible Illness
Many Lyme patients who battle this disease on a daily basis appear healthy, which is why Lyme disease has been called "the invisible illness." They often "look good," and their blood work appears normal, but their internal experience is a far different story. Patients struggling with Lyme disease usually become adept at hiding their pain from others as a way to cope and restore some degree of normalcy to their lives.
Part of the problem with diagnosing and treating Lyme disease is that it is so easy to misdiagnose.
Lyme disease is called "the great imitator," mimicking other disorders such as:
• Multiple sclerosis (MS),
• Chronic fatigue syndrome [ME/CFS],
• And Alzheimer's disease.
In some cases, Lyme patients can even develop paralysis or slip into a coma. The only distinctive hallmark unique to Lyme disease is the "bull's eye" rash, but this is absent in nearly half of those infected. Laboratory tests are notoriously unreliable.
Fewer than half of Lyme patients recall a tick bite. In some studies, this number is as low as 15%. So, if you don't recall seeing a tick on your body, that doesn't rule out the possibility of Lyme disease.
According to Tick-Borne Disease Alliance (TBDA):
"Although the bull's eye red rash is considered the classic sign to look for, it is not even the most common dermatologic manifestation of early Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is a clear, unequivocal sign of Lyme disease..."
Besides the rash, some of the first symptoms of Lyme disease may include a flu-like condition with fever, chills, headache, stiff neck, achiness and fatigue. For a complete list of symptoms, refer to the TBDA (http://TBDAlliance.org), but some of the more frequent symptoms include the following:
• Muscle and joint pain
• Neurological problems
• Heart involvement
• Vision and hearing problems
The "Lyme Paradox"
One of the reasons blood tests are so unreliable as indicators of Lyme infection is that the spirochete has found a way to infect your white blood cells. Lab tests rely on the normal function of these cells to produce the antibodies they measure.
If your white cells are infected, they don't respond to an infection appropriately. And the worse your Borrelia infection is, the less likely it will show up on a blood test. In order for Lyme tests to be useful, you have to be treated first. Once your immune system begins to respond normally, only then will the antibodies show up.
This is called the "Lyme Paradox" – treatment before diagnosis.
Dr. Klinghardt believes one of the factors that's led to increased Borrelia virulence is the dramatic increase in electromagnetic fields (EMFs) and microwave radiation from cell phones and towers, wireless Internet, power lines, household electrical wiring, etc. Reduction of exposure to these fields is a key part of his Lyme treatment protocol, which I'll be discussing shortly.
Dr. MacDonald's Syphilis Model
The behavior of Borrelia may be more similar to its cousin Treponemapallidum, the spirochete responsible for syphilis. Both take different forms in your body (cystic forms, granular forms, and cell wall deficient forms), depending on what conditions they need to accommodate. This clever maneuvering helps them to hide and survive.
Perhaps the most compelling evidence for Borrelia as a far greater player than previously thought comes from the work of Alan MacDonald, MD, who's been studying parallels between Lyme disease and syphilis for the past 30 years. MacDonald found the DNA of Borrelia in 7 out of 10 brain specimens from people who died of “Alzheimer's disease.”
Astonishingly, the DNA was "fused" with human DNA, into one molecule! Syphilis is well known for causing symptoms across multiple body systems, including neurosyphilis, the psychiatric form of the illness.
Syphilis remains relatively easy to treat, as long as it's diagnosed early. But its cousin Borrelia seems to be upping the ante.
Dr. Klinghardt stated in one of our interviews that he's never had a single patient with Alzheimer's, ALS, Parkinson's disease or multiple sclerosis who tested negative for Borrelia. Those are all diseases with no known cause. Could Lyme disease be the missing link? And if it is, why hasn't there been a stampede of researchers in pursuit of the truth?
Attorney General Finds IDSA Lyme Guidelines Flawed and Panel Corrupted
A handful of people are the gatekeepers for information about Lyme disease. Most of those occupy positions within the Infectious Diseases Society of America (IDSA), which publishes guidelines for a number of infectious diseases, one of which is Lyme.
In the IDSA's most recent clinical practice guidelines for Lyme disease they claim Lyme is easily cured with, typically, two weeks of antibiotics, requiring 28 days in rare cases. They also claim there is no scientific evidence for chronic Borrelia infection. However, the literature choices they list in their reference section clearly reflect their bias. Of the 400 references they cite, half are based on articles written by their own people. Their literature review in no way represents the total body of science related to the study of Lyme disease.
Connecticut Senator Richard Blumenthal has long been a strong advocate for people with Lyme disease. While he was Connecticut's Attorney General, Blumenthal conducted an investigation into the IDSA's panel members and 2006 Lyme disease guidelines
These guidelines have sweeping impacts on Lyme disease medical care:
• They are commonly applied by insurance companies to restrict coverage for long-term treatment and strongly influence physicians' treatment decisions.
• Insurance companies have denied coverage for long-term treatment, citing these guidelines as justification that chronic Lyme disease is a myth.
Blumenthal's investigation found conflicts of interest were rampant in the IDSA, with numerous undisclosed financial interests among its most powerful panelists.
The IDSA agreed to create a new panel to review the ethics of the 2006 IDSA panel, overseen by Blumenthal's office. But this ended up being nothing more than a pacifier. The end result was a Final Report published on the IDSA site finding the original guidelines "based on the highest-quality medical/scientific evidence available," stating the authors "did not fail to consider or cite any relevant data." Senator Blumenthal continues to fight the establishment, however, and has taken his battle to the Senate.
The following are some other resources you might find helpful:
• The International Lyme and Associated Disease Society (ILADS) is by far the best and most responsible group.
• Turn the Corner Foundation
• Tick-Borne Disease Alliance (TBDA)
• Lyme Diseases Association, Inc.
• Leading Lyme disease expert Joseph J. Burrascano, MD, wrote what is essentially a manual for managing Lyme disease, entitled "Advanced Topics in Lyme Disease," which is worth adding to your resource files. Realize that his treatment focus is long-term antibiotics, which I believe should not be your first choice. Nevertheless, there is some good information in this publication.
• “Under Our Skin” – free access to full-length film, courtesy of Mercola.com at http://healthypets.mercola.com/sites/healthypets/archive/2011/06/14/lyme-disease-on-the-rise.aspx
Note: This information (© 1997-2012 Dr. Joseph Mercola. All Rights Reserved) has not been reviewed by the FDA. It is general information, based on the research and opinions of Dr. Mercola unless otherwise noted, and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is not intended to replace a one-on-one relationship with a qualified healthcare professional and is not intended as medical advice. It is always very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team
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