By Dr. Mercola
According to the U.S. Centers for Disease Control and Prevention (CDC), an estimated 300,000 Americans are diagnosed with Lyme disease each year, although some data suggest it may actually be over 440,000.1,2 While exact numbers are difficult to ascertain, what is known is that the prevalence is rising.
Since national surveillance began in 1982, the number of annual Lyme
cases reported has increased nearly 25-fold. The disease is also
creeping out geographically.3,4 Between 1993 and 1997, 43 U.S. counties had a high incidence of Lyme disease. By 2012, the number of hotspots had risen to 182.5
Today, Lyme disease is becoming more widely recognized as an actual
disease, but sufferers still meet plenty of resistance from the medical
community and insurers. In years past, Lyme sufferers were often told
their problem was psychiatric; in essence, the symptoms were "all in
their head."
Under Our Skin
"Under Our Skin 2: Emergence" is a sequel to the award-winning and Academy Award semifinalist documentary "Under Our Skin,"6
which exposed the hidden story of "medical and scientific malfeasance
and neglect," as thousands of people with Lyme disease go undiagnosed,
or get misdiagnosed each year.
"Under Our Skin" had a tremendous impact, raising awareness among
patients, doctors and health authorities alike. Since the film's release
in 2014, the CDC has raised its estimated prevalence of Lyme by 10
times, making it more prevalent than HIV and breast cancer combined in
the U.S.
Even more importantly, scientific hypotheses presented in the film —
such as the theory that Lyme organisms may thrive in biofilms, which
helps explain why treatment is so difficult and recurrence so common —
have now become widely accepted.
However, despite progress Lyme patients still face an uphill battle.
"Emergence" examines the deepening crisis, as prevalence is rising far
faster than the evolution of diagnosis and treatment.
Around the world, controversy around Lyme disease is still brewing, and
the film reveals medical collusion and conflicts of interest that keep
Lyme patients suffering. The film ends on a hopeful note however, by
showing how patients in the original film have managed to improve their
health and reclaim their lives.
The History of Lyme Disease
Lyme disease was named after the East Coast town of Lyme, Connecticut, where the disease was first identified in1975. 7 By 1977, the black-legged tick (Ixodes scapularis, also known as the deer tick) was linked to transmission of the disease.
In 1982, Willy Burgdorferi, Ph.D., discovered the bacterium responsible
for the infection: Borrelia burgdorferi (B. burgdorferi),8 a relative to the spirochete bacterium that causes syphilis. The bacteria are released into your blood from the infected tick.
We now know there are five subspecies of B. burgdorferi with more than
100 strains in the U.S. and some 300 strains worldwide, many of which
have developed resistance to antibiotics.
Part of what makes B. burgdorferi such a formidable foe is its ability
to take different forms in your body, depending on the conditions. This
clever maneuvering helps it to hide and survive.
Its corkscrew-shaped form also 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.
Increasing the complexity further, some symptoms may also be due to
co-infections, caused by other disease-causing organisms that like to
travel with the B. burgdorferi bacterium. Many Lyme patients have one or
more of these co-infections, which may or may not respond to any given
treatment for B. burgdorferi.
To learn more about the symptoms and prevention of Lyme disease, make
sure to check out the award winning films Under Our Skin and Under Our
Skin 2: Emergence.
Urban Sprawl Has Contributed to Rising Lyme Prevalence
Since the late 1970s, the spread of Lyme disease has primarily been
blamed on deer. However, more recent evidence suggests rodents like mice
and rats are a far more serious threat,9 and the rise in Lyme disease has been traced back to the elimination of natural predators.
Ticks are not born with the Lyme spirochetes. They pick up the bacteria when feeding on an infected host.10
Research indicates that white-footed mice infect 75 to 95 percent of
larval ticks that feed on them, while deer only infect about 1 percent.
According to a 1996 study,11
rats are even more infectious than mice, noting that "the capacity of
rats to serve as reservoir hosts for the Lyme disease spirochete,
therefore, increases risk of infection among visitors to ... urban
parks."
Another study12
published the following year also found that Norway rats and black rats
were exceptionally effective hosts, infecting nearly all ticks that fed
on them.
The main predators of small rodents like mice and rats are foxes, birds
of prey and snakes. Agricultural and urban sprawl has decimated the
habitats of these natural predators of mice and rats, allowing
disease-carrying rodent populations to rise unabated.
Moreover, while snakes and birds of prey like hawks, falcons and owls
are losing their natural habitats, the coyote population not only is
thriving in most states, but is also killing off the only predators of
rodents left, namely foxes and cats.
A study13
that looked at these factors found that increases in Lyme disease in
the Northeast and Midwest U.S. in the past three decades consistently
correlated to declines in red fox.
It also found that as fox populations decrease and rodents increase,
coyotes do not help control small rodent populations because they prefer
much larger prey.
Other Contributing Factors
Besides mice and rats, and to a lesser degree deer, Lyme can also be
spread by other insects besides ticks, including mosquitoes, spiders,
fleas and mites.
Complicating matters further, there's yet another tick-borne disease on
the loose. Researchers have identified a tick-borne illness that is very
similar to Lyme, caused by Borrelia miyamotoi (B. miyamotoi). The CDC14
describes B. miyamotoi as a distant relative to B. burgdorferi, being
more closely related to bacteria that cause tick-borne relapsing fever.
This disease is characterized by recurring episodes of fever, headache,
nausea and muscle or joint aches.
This bacterium was first identified in Japanese ticks in 1995. Since
then, it's been found in several rodent species (and the ticks that feed
on them) in the U.S., as well as in ticks feeding on European red deer,
domestic ruminants and white-tailed deer. According to the CDC:15
"Given that B. miyamotoi uses the same vector ticks as B.
burgdorferi and that the range of I. scapularis ticks continues to
expand, it seems inevitable that the human population will be
increasingly exposed to B. miyamotoi."
What Makes Lyme Disease Such a Challenging Disease?
Symptoms of Lyme disease typically start out with unrelenting fatigue, recurring fever, headaches
and achy muscles or joints. The disease may then progress to muscle
spasms, loss of motor coordination and even intermittent paralysis,
meningitis or heart problems. For a more complete list of symptoms, see
the Lyme Research Alliance symptom's checklist.16
On an interesting side note, a 2014 paper17,18
published in the journal Frontiers in Zoology argues that ticks should
be reclassified as venomous; their salivary proteins being similar to
those found in scorpion, spider, snake and bee venoms. An estimated 8
percent of tick species are in fact capable of causing paralysis with a
single bite.
The simplest presentation of Lyme disease is the orthopedic forms, which
tend to affect the larger joints. When the microbes and the associated
immune reactions are situated in the connective tissue, the infection
presents as a "vague, dispersed pain," which is easily misdiagnosed as
fibromyalgia.
A major challenge with Lyme disease is that its symptoms imitate so many other disorders, including multiple sclerosis (MS), arthritis,
chronic fatigue syndrome, fibromyalgia and even Alzheimer's disease,
making proper identification difficult and time consuming.19
What's worse, many Lyme sufferers outwardly look quite healthy and
their blood work often raises no cause for concern, which is why Lyme
disease has also been called "the invisible illness."
Better Diagnostics for Lyme Are Sorely Needed
A big problem facing Lyme patients and their treating doctors is the
difficulty of reaching a proper diagnosis. Conventional lab tests are
unreliable, and one reason for this is because the spirochete has the
ability to infect your white blood cells. Lab tests rely on the normal
function of white blood cells to produce the antibodies they measure. If
your white cells are infected, they don't respond to infection
appropriately.
In order for blood tests to be truly useful, you need 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." You have
to be treated before a proper diagnosis can be made.
That said, I recommend the specialized lab called Igenex
because they test for more outer surface proteins (bands), and can
often detect Lyme while standard blood tests cannot. Igenex also tests
for a few strains of co-infections such as Babesia and Erhlichia.
Patients and Doctors Fight for Recognition of Chronic Lyme
As if the difficulties of getting a proper diagnosis and treatment were
not enough, Lyme sufferers face additional hurdles when they don't fully
recuperate after the initial treatment. The Infectious Diseases Society
of America (IDSA), which publishes guidelines for a number of
infectious diseases, claims there's no scientific evidence to back up
the theory that Borellia infection can become chronic.20
IDSA's 2006 clinical practice guidelines for Lyme disease21,22
claim that Lyme is easily cured with two weeks of antibiotics,
requiring 28 days in rare cases. However, the references they base this
on reflect a clear 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.23
An antitrust investigation into IDSA's panel members conducted in 2007
also revealed rampant conflicts of interest. Unfortunately, such
discoveries have not resulted in positive change.
In 2009, IDSA created a new panel to review the ethics of the original
2006 members that created the Lyme guidelines. The Final Report24
concluded that the original guidelines were "based on the
highest-quality medical/scientific evidence available," and that the
authors "did not fail to consider or cite any relevant data."
As a result, chronic Lyme patients continue having to fight for their
right to treatment, as IDSA's guidelines have sweeping impacts on Lyme
disease medical care. Insurance companies frequently restrict coverage
for long-term treatment based on IDSA's guidelines. Physicians'
treatment decisions are also guided by its recommendations.
Opposing IDSA is the International Lyme and Associated Diseases
Society (ILADS), the members of which argue that many patients suffer
long-tem consequences and require far longer treatment than recommended
by IDSA.
Signs of Slow but Steady Progress
There are signs of progress though:
• Last year, a new Lyme research center
attached to the rheumatology division at Hopkins Bayview Medical Center
was created. Led by Lyme researcher Dr. John Aucott, the research center
will focus on chronic Lyme.25 • In February, 2016, lymedisease.org
reported that the National Guidelines Clearinghouse, "a federal database
that provides treatment information to health care professionals and
insurance companies," had removed IDSA's treatment guidelines from its
website, leaving only ILADS guidelines.26
The IDSA guidelines are also due for revision, although major
changes are probably unlikely. On the upside, IDSA has reluctantly
agreed to include a Lyme patient on its guideline's panel this time,
after being pressured by Lyme disease advocate groups, patients and U.S.
Congressmen. Until the IDSA guidelines are updated, for which there is
no known deadline as of yet, ILADS treatment guidelines are the only
ones listed by National Guidelines Clearinghouse.
• At the end of June, 2016, the Delaware
Senate and House passed House Bill 291, which calls for the creation of
an oversight board to educate health care professionals about Lyme
disease.27 • On July 31, 2016, the Massachusetts
Senate passed the Lyme disease insurance bill (H4491). Effective
immediately, the bill calls for mandatory insurance coverage for the
long-term treatment of chronic Lyme, setting a precedent for other
states to follow.28
Take Prevention Seriously
Considering the difficulty of diagnosing and treating Lyme disease,
taking preventive measures should be at the top of your list:
• Avoid tick-infested areas, such as leaf
piles around trees. Walk in the middle of trails and avoid brushing
against long grasses path edgings. Don't sit on logs or wooden stumps. • Considering the high infection rate of
rats, you'd be wise to take precautions if you're in an area where rats
have been sighted. • Wear light-colored long pants and long sleeves, to make it easier to see the ticks. • Tuck your pants into socks, and wear
closed shoes and a hat, especially if venturing out into wooded areas.
Also tuck your shirt into your pants. • Ticks are very tiny. You want to find
and remove them before they bite, so do a thorough tick check upon
returning inside, and keep checking for several days following exposure.
Also check your bedding for several days following exposure.
As for using chemical repellents, I do not recommend using them
directly on your skin as this will introduce toxins directly into your
body. If you use them, spray them on the outside of your clothes and
avoid inhaling the spray fumes. The Environmental Protection Agency
(EPA) has a list29 indicating the hourly protection limits for various repellents.
If you find that a tick has latched onto you, it's very important to
remove it properly. For detailed instructions, please see
lymedisease.org's tick removal page.30 Once removed, make sure you save the tick so that it can be tested for presence of pathogenic organisms.
About the Director
I believe in bringing quality to my readers, which is why I wanted to
share some information about the director, Andy Abrahams Wilson, from
"Under Our Skin 2: Emergence". We sat down with Andy to know a little
more about what goes in to making these films. Thank you to Mr. Wilson
for sharing with us.
What was your inspiration for making this film?
Lyme disease is a canary in the coal mine and case study for what's
poisonous in both our environment and our science. At the epicenter a
tiny microbe looms, providing a powerful symbol for an issue that is
hidden and lurking — so small yet immense, so real but unrecognized.
What has gotten under our skin is not just a microorganism, but a lethal
system which has abandoned some of the most needy and threatens us all.
Our own human skin is a microcosm of the earth, and the extent to
which the earth's body is out of balance, so is our own. With "Under Our
Skin" and its sequel "Emergence," it is my mission to show the horror
of an illness and an ill system that too long has been ignored. But I
also want to show the human and natural beauty right next to it.
Sometimes indistinguishable, the beauty and horror are intertwined.
If the films merely perpetuate the idea that the natural world is
perilous, or that human nature is corrupt, we miss out on the beauty
that surrounds us. On the other hand, if we are lulled by convention and
don't look beneath the surface, we risk infection by the equally
dangerous maladies of ignorance and indifference.
What was your favorite part of making this film?
As the director, my favorite part of the film was being a witness to
the hundreds of Lyme sufferers interviewed through the four years of
production. This witnessing can be incredibly healing, especially for
people whose voices have not been heard or validated. Of course, once
the film was completed, the personal stories about how the film changed —
or even saved — people's lives was the icing on the cake. To create art
that helps heal is the best reward possible.
Where do the proceeds to your film go?
Open Eye Pictures, the production and distribution company behind the
film, is a nonprofit specializing in films that educate and activate.
All proceeds from the film go back into the mission of the company to
bring awareness and impact change through film. We have an ongoing Lyme
outreach and community engagement program which is supported sole by
proceeds from film sales.
Together with your help we can continue
to spread the word about this harmful disease so that we can take
control of our health and the health of our children. For the month of
August, we are offering a combo deal of Under Our Skin Parts 1 and 2 for
a discounted price so be sure to take advantage of this great deal.
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