Camp A & Camp B

The Lyme Disease Controversy

Camp A & Camp B

By Lucy Barnes

People who have been stricken with Lyme disease are not only faced with a serious infectious disease, they may easily become distressed over the political predicament they are facing when attempting to find treatment.

Little did they know that once they were bitten by a tiny infected tick, they would be bitten a second time by a group of practitioners who once swore an oath to 'first do no harm'.

Since day one a controversy has been brewing in the world of Lyme, pitting doctors against doctors, labs against labs and insurance companies against anyone they may have to reimburse.

Lyme patients have literally been hung out to dry by this group of so-called professionals and left without proper testing, a definitive diagnosis or a successful treatment protocol.

A patient who falls prey to a doctor on the wrong side of the Lyme fence eventually learns these so-called healers do not have the patient’s best interest at heart. Everything is stacked against them.

Instead, they have learned some doctors are being lead around by the nose and are following whoever happens to be signing their paychecks at any given point in time.

A dwindling group of these callous medical professionals are causing growing number of patients to become chronically ill and disabled by ignoring obvious Lyme symptoms, disputing test results from experienced labs and suggesting or prescribing drugs to try to mask symptoms as opposed to addressing Lyme as what it is- an active infectious disease of the worst kind.

These doctors have been quick to talk the talk to any unsuspecting passer-by or colleague, but not walk the walk with their patients down the road to recovery. Concrete evidence and tons of it continue to surface, proving these dinosaurs' original theories are obsolete; however, they still stick by their guns in an attempt to save their declining reputations and almighty pocket books.

As the talkers (Camp A) cut corners and devise new schemes to prevent going down with their ship, the front-line physicians (Camp B) who are actually treating patients are saddled with increasing numbers of extremely ill people who shouldn’t have ended up in that leaky Camp A boat.

For the sake of the almighty dollar Camp A's floundering medical misfits have allowed the Lyme controversy to exist and drag on for over 30 years with support from the Centers for Diseases Control (CDC).

While patients needlessly suffer Camp A dismisses and actively attacks any scientific research that contradicts their original asinine conclusions. Aditionally, Czamp A proactively fights any legislation designed to improve the situation for patients for fear it would eventually sully their names and expose their wrong doings.

In spite of the growing numbers of reported Lyme cases, Camp A keeps singing the same old tune that Lyme disease is, "over diagnosed and over treated". They have concluded that if someone is bitten by a deer tick they should just "wait and see" if the organisms disseminate and cause a multitude of symptoms before addressing the spreading infection.

Camp A ignores or dismisses research that has proven the Lyme spirochetes can travel to the spinal fluid within hours, and as we all know time is of the essence if treatment is to have a chance. They oppose any studies indicating spirochetes can be viable after short term (inadequate) treatment because they think the spirochetes shouldn’t be.

Camp A still insists Lyme patients must prove they were bitten by a deer tick bite, have a typical "bulls-eye rash" and must have two positive blood tests before Lyme can be considered a possibility. Research has shown that less than 50 percent of patients with Lyme recall a tick bite and less than 50 percent of adults develop a rash (less than 10 percent of children have a rash).

The standard lab tests promoted by Camp A, often ones they have financial interests in, miss as many as 80 percent of those who are infected and are notorious for providing inaccurate results.

Members of Camp A blatantly ignore warnings issued by the CDC, FDA, International Lyme and Associated Diseases Society, Lyme Disease Association and many other prominent organizations that agree a negative test should never be used to rule out Lyme disease.

Camp A insists Lyme disease, a systemic infection that can attack multiple organs or systems at random, fit into a nice neat box and conform to antiquated lab standards that were made up over a decade ago. Then, they claim, and only then, should Lyme disease be considered a possible cause for investigation.

Camp A also falsely claims patients who remain ill or relapse after short-term treatment must not have had Lyme disease and were originally misdiagnosed. These patients, many who not only have acute or chronic Lyme, but one or more active tick borne co-infections are often told they are faking it or malingering and are ordered to go back to their normal routines, seek mental health counseling, and/or get more exercise.

Increasing numbers of physically sick patients are prescribed psychiatric drugs and are told to accept the fact that nothing is wrong with them. To compound patients problems, many have been ordered to endure a multitude of invasive tests intended to rule out an obvious case of Lyme, which leave the patients with a know-nothing, do-nothing diagnosis of ABLS (Anything But Lyme Syndrome).

As time progresses and the smoldering infections accelerate, ABLS patients are often misdiagnosed with chronic fatigue syndrome, ALS, MS, arthritis, depression, fibromyalgia, lupus or a combination of various conditions, instead of the true tick borne infections that remain active in their brains and throughout their bodies.

~Early days of “Lime arthritis” ~

Camp A first speculated that antibiotics would not work on patients with Lyme disease because it was a virus. Therefore, they recommend no treatment and as a result patients were expected to recover on their own. This plan obviously did not work and crippled many adults and children along the way.

In the meantime, concerned front line physicians caring for a growing number of Lyme patients discovered they could successfully treat Lyme patients with antibiotics. They quickly realized something was wrong with the original "virus" theory and that Lyme MUST be caused by a bacterial infection. They were right!

Camp A, now walking about with egg on their face for wrongly declaring Lyme was a virus that needed no treatment, dilly-dallied about until they were eventually forced to jump over the bodies they left in their wake and onto a new bandwagon to declare, "oh yes, a short course of antibiotics would cure Lyme disease".

However, as some of the sicker Lyme patients began returning to doctor’s waiting rooms when Camp A's short term treatment protocols failed, retreatment or longer courses of antibiotics were proven by front line doctors to help these patients recover.

After facing more and more criticism, and after a good deal of foot dragging was done to prevent change, Camp A was eventually forced to admit they too were successful when retreating patients who remained ill and it might be necessary in some cases.

During this time Camp A's wavering and ineffectual theories and protocols adversely affected thousands of patients and their families. In turn, many suffered from long-term chronic Lyme and additional tick borne infections that resulted in permanent damage and even death.

In desperation, patients searched world wide for skilled physicians who would help them properly address their ongoing infections.

To help people who were suffering and to distinguish a doctor who was knowledgeable about treating Lyme, patients began telling others to see what they referred to as a "LLMD". (Lyme Literate MD)

As the number of reported Lyme cases increased and patients began seeing positive results with extended treatment, Camp A came under fire from newly formed volunteer Lyme organizations and front-line physicians who had scientific proof Lyme organisms could survive after short-term treatment.

The mounting evidence concluded long-term treatment resulted in more successful outcomes for many patients. LLMD's said that it was not only necessary to treat the chronically ill, but it was the humane thing to do.

A handful of people at the CDC with vested interests in the outcomes (patents, etc.) strongly disagreed and fought as if their lives depended on it against sick patients having access to better tests and recieving additional treatment.

The Infectious Diseases Society of America (IDSA) and CDC, aka Camp A, actively fought sick patients, their doctors and the Lyme patients in a most vile way for decades, and still do.

Camp A doctors fussed like crazy and dug in their heels even more while physicians treating patients outside the IDSAs limited "box" had success and had proven them wrong again. Unfortunately, the good news- that patients could improve with longer courses of treatment- apparently fell on the deaf ears of Camp A members. Or, as many suspect, they had something to hide.

It wasn't until Camp A discovered more money could be funneled their way by developing a vaccine to prevent Lyme that they actually changed their tune and shockingly admitted Lyme was indeed a devastating and debilitating illness!

Camp A’s sudden flip-flop saw them abandoning their original claims of Lyme being "no big deal". The CDC hung close on their coat tails too, with dreams of financial gains dancing in their heads.

Their research into the chronic phases of Lyme lent credence to the actual truth, which they documented extensively and then widely promoted in order to stir fear in people so they would insist on getting a vaccine that Camp A promoted as something to save the world from this horrible disease.

In preparation for the vaccines release, television and newspaper advertisements began promoting Camp A's latest cash cow, and what was once an unknown rare disease suddenly became a household word.

Camp A, no doubt with an eye on their precious bank accounts, also found time to register Lyme-related patents and promote their newly developed lab tests with their CDC buddies egging them forward.

As Camp A raced to the patent offices to claim their prize money, they were also sucking down available research money to use to pad the medical journals with their detailed reports about the unremitting consequences and serious nature of Lyme disease.

Finally, feeling like they were back on top of the Lyme world, they convinced major university hospitals, and unsuspecting physicians to promote their vaccine too.

Little did they realize their apple cart was preparing to topple once again.

After reports of serious problems surfaced, the FDA issued warnings and cautioned physicians and the public not to rely solely on the Lyme tests as a diagnostic tool. To make matters worse, the new vaccine once thought to be Camp A's ticket to fame and fortune quickly blew up in their faces after 1,000 plus adverse event reports (complaints) were filed with the FDA in less than two years.

The failed lab tests and the failed vaccine, which many in Camp A considered to be their proverbial ship coming in, suddenly sank. Legal actions and multiple lawsuits threatened Camp A's reputation and livelihood.

As panic set in and the sparks began to fly over money, positions, job benefits and stocks there was a serious parting of the ways between some of Camp A's good old boys network. Things got so bad they were actually suing each other!

One after another, Camp A associates put their tails between their legs to scatter near and far while back in the kitchen the Lyme fires were burning out of control.

Sick and disabled Lyme patients, realizing they had been subjected to the worst of the worst in medical care, were filing complaints and initiating legal actions against Camp A doctors and their brown-nosing insurance companies.

Many patients had become permanently disabled or had lost family members as a result of Camp A's response to their illness and quest for the almighty dollar. Patients believed the very ones they had trusted and paid dearly to help them regain their health, had knowingly caused them irreversible harm.

Some Camp A members were accused of failing to diagnose or properly treat serious infectious diseases and the courts agreed.

Compensation in the millions of dollars was awarded to disabled victims. Attorneys, on behalf of patients who died or who had reported serious complications from the vaccine also filed lawsuits against Camp A members.

Floating up the creek without a paddle, Camp A was forced, once again, to flip-flop their position in an attempt to save their rear ends.

They initiated the "cover your rump” campaign complete with PR firms that shouted to anyone who would listen, true or not, that Lyme was, once again, over diagnosed and over treated and no big deal. Having backed themselves in a proverbial corner, they tried desperately to convince the public that patients suffered more from "Lyme anxiety" instead of a serious infectious disease that could disable or kill them.

Members of Camp A pulled all the stops and waged a full blown war on the very patients they were suppose to be helping. They became consumed and obsessed with accomplishing their mission.

Camp A tried to convince everyone that positive tests for Lyme were often false positives (rather than false-negatives) and labs, other than their own, that specialized in detecting tick borne diseases were faulty for one reason or another.

They continued bedding down with insurance companies who were delighted to discuss any dollar saving tactics that were hidden up the sleeves of Camp A members.

Camp A doctors went so far as to claim that people with Lyme disease were not actively infected and often not physically ill, but instead they suffered from a variety of undiagnosed mental disorders. One notable mental disorder- one Camp A invented for their own purposes and tried to make "official" (and failed) - was called "antibiotic seeking behavior".

While the war against patients raged on, insurance companies snuck in the back door and developed rules with Camp A’s literature as the basis for their policies. With the assistance from the CDC/IDSA, insurers could reduce the length of time (and money) needed to treat patients.

Insurers were thrilled, while patients suffered even more.

Camp A spent their spare time applying for more research money and spent time in court testifying against sick Lyme patients and the doctors brave enough to treat them. Camp A members were quick to brag when they “screwed over” a patient in court, and awarded themselves extra brownie points when they also burned the patient’s treating physician in the process.

Some, who obviously had high opinions of themselves and too much time on their hands, volunteered to testify in hearings against front line physicians who were successfully treating chronically ill Lyme patients. No extra-curricular activity it seemed was too bothersome to go out of their way for if it succeeded in discrediting Lyme-treating physicians who were gaining respect and were successful in the public's eye.

In order to try and regain credibility, Camp A doctors also granted press interviews and sparked a miniature media frenzy around themselves. To insure only their views concerning Lyme would be taken seriously, leaders on the Camp A bandwagon declared Camp A doctors actually needed bodyguards to protect themselves from crazed Lyme patients who didn't really have Lyme, but some sort of mental illness.

Literature coming from Camp A at this point once again promoted the false notion that the treatment time required to cure Lyme should be shortened dramatically and because of that unsubstantiated theory, their new best friends in the insurance industries placed them high on their pedestals.

In another attempt to try to boost their credibility, Camp A members published additional medical papers using themselves and their own literature to support their own faulty, biased theories.

As the self-promotion of Camp A doctors and their theories became totally unbearable, hundreds of chronically sick and disabled patients from across the county gathered together and peacefully protested Camp A meetings.

Adding insult to injury for Camp A, some of Camp B's leading tick borne disease specialists walked out of an international conference in NY city in protest, claiming a Camp A conference was spewing nothing more than “hog wash”. (Decades later they still haven't been invited back.)

Camp A's most recently published articles falsely claim that only ONE dose of Doxycycline is needed to cure Lyme disease. And oh what a magical pill it must be, indeed.

Perhaps if Camp A continues on their stroll backwards through time, lessening the supposed need for adequate treatment each year, those with a tick bite may soon be able to click their heels together and wish away a serious tick borne infectious disease.

Considering the fact Lyme disease currently costs society over a billion dollars a year and can ultimately destroy the lives of hundreds of thousands of people, Camp A's magic pill theory should be considered a true miracle or as it truely is, a total disaster.

In the meantime...

Camp B disagrees wholeheartedly with Camp A on many points. Camp B knows through personal experience, clinical experience and scientific research that Lyme disease can be a complicated and complex infectious disease that destroys lives and at the least requires prompt, intense and aggressive treatment in order to have a better chance at a successful outcome.

With so many people originally following the misguided lead of Camp A doctors and becoming chronically ill, Lyme disease advocates and their educational messages are being shared on websites.

Camp B's sites receive millions of hits each month from patients in need of assistance. Hundreds of new Lyme disease support groups have formed across the country out of desperation and the leaders report being overwhelmed by the growing numbers of terribly ill patients they see who have been booted out of Camp A offices while still actively infected with tick borne diseases.

Telephone hot lines dedicated to providing information for people with Lyme disease respond to over hundreds of thousands of calls a year and membership in Lyme organizations continues to increase.

As the public demands to know more, numerous articles and books have been published on how to deal with Lyme disease and co-infections. While Camp A sticks to their guns and sucks up available grant money to support their antiquated notions, private volunteer non-profit groups across the country are holding dinners, dances, walk-a-thon's and other fund raisers to try to educate and support the public.

While patients are donating money from their own pockets to advance Lyme disease research and education, Camp A health departments across the country are spending billions of dollars each year on unimportant projects like how many fruits and vegetables individuals consume in a year’s time.

Camp B physicians on the front lines are increasingly overwhelmed with the number of new cases of tick borne disease patients. Many people come to the LLMD's offices already severely and chronically ill after following the outdated protocols and recommendations from Camp A that the CDC continues to support.

As the infection within the patients take a stronger hold, they are suffering and dying from a disease still reported to be "easily cured and easily treated" by Camp A profiteers.

Unfortunately, most of us are or know people in Camp B who have suffered from tick borne illnesses.

Documented research over the past twenty five years, along with biopsy and autopsy reports, countless medical documents and bacteria cultured from patients tissues after treatment have proven beyond a doubt that Lyme is a complex infection that can remain active and very destructive even after treatment.

Additionally, we know the Lyme picture may be complicated by other known or unknown tick borne infections. Yet, Camp A continues to promote flawed reasoning and failed protocols with no allowance for those who are not cured using their insurance friendly methods.

Members of Camp B have learned the hard way that Lyme is not "over diagnosed, over treated, or easily cured" and patients who were ill for many months or even years actually do improve once they have a proper diagnosis and proper treatment.

For their efforts, Camp B’s front-line physicians are under continual pressure and direct attack for treating patients with chronic Lyme disease. They are ridiculed by Camp A, investigated by medical boards, denied the ability to accept insurance and are threatened with losing their license if they treat patients above and beyond Camp A’s wishes.

So why do Camp A doctors still refuse to diagnose or treat a serious debilitating infectious disease, or test for and treat co-infections that may be complicating the Lyme disease picture? It doesn’t make sense to countless sick people who find themselves stumbling out of Camp A offices looking and praying for help from someone.

The answer is simple, but shameful.

One reason is that some Camp A members haven’t kept abreast of or are ignoring years of medical research and documentation that overwhelmingly proves the original theories from Camp A wrong. Many doctors simply think they know better and refuse to actually listen to their own patients, continually dismissing complaints of ongoing symptoms.

Another reason is that Camp A doctors are in fear of losing their medical licenses and livelihoods if they don't stick to their guns and continue to support their original BIG mistakes. In fact, some of the most successful lawsuits against doctors have been for NOT properly diagnosing and treating Lyme disease.

Lastly, insurance companies lose money when treating chronically ill Lyme patients. We all know that situation can hurt a number of powerful pocket books.

Why should you be concerned about this situation?

There are increasing numbers of chronically ill and disabled children and adults still stumbling out of Camp A's offices and realizing the treatment they were provided didn’t work.

These sick patients also see many of their neighbors losing the battle with Lyme after years of pain and suffering. They have witnessed Camp B physicians who care for them being harassed, ridiculed and shut down, one after the other.

The madness must stop.

Bottom line...

If Camp A were right, there wouldn't be a Camp B.