The Lyme Disease Controversy Camp A & Camp B ( A MUST READ)
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.
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 an active infectious disease.
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 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 the 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 boat belonging to Camp A.
For the sake of the almighty dollar, Camp A's floundering medical misfits have allowed the Lyme controversy to drag on for over 30 years, with help from the CDC.
While patients in their hands needlessly suffer, Camp A dismisses any research that contradicts their original asinine conclusions. Then they top it off by spending their spare time fighting any legislation designed to improve the situation for fear it would eventually expose their wrong doings.
In spite of the growing numbers of reported cases, Camp A keeps singing the same old tune that Lyme disease is, "over diagnosed and over treated". They 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 infection.
They ignore or dismiss research that has proven the Lyme spirochetes can travel to the spinal fluid within hours to days, 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 because they think the spirochetes shouldn’t be.
They still insist Lyme patients must prove they were bitten by a deer tick bite, have a typical "bulls-eye rash" and they 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 used 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 the warnings 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.
Camp A insists that Lyme disease, a systemic infection that can attack multiple organs or systems at random, fit in a nice neat box and conform to antiquated lab standards devised over a decade ago. Then, they claim, and only then, should Lyme disease be considered a possible cause for investigation.
Camp A believes that patients who remain ill or relapse after short-term treatment must not have had Lyme disease originally and were 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 or malingering and are ordered to go back to their normal routines, seek mental health counseling,
and/or get more exercise.
Increasing numbers of these patients are prescribed psychiatric drugs and are told to accept the fact that nothing is physically wrong with them. To compound their 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 no-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 conditions, instead of the true tick borne infections that remain active in their brains and throughout their bodies.
~Early days of “Lime arthritis” ~
Years ago, 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 many patients were expected to recover on their own.
Concerned front line physicians caring for Lyme patients discovered they could successfully treat the growing numbers of serious ill Lyme patients with antibiotics. They were very successful assisting patients regain their health. They quickly realized something was wrong with the original theory and Lyme MUST be caused by a bacterial infection. They were right.
Camp A, walking about with egg on their face at that point 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 the 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 short courses of antibiotics failed, retreatment or longer courses of antibiotics were proven to help these patients recover.
After a good deal of foot dragging, Camp A eventually admitted they too were successful when extending treatment courses, and admitted that retreating patients who remained ill might, on a rare occasion, be necessary.
For a number of years, 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 tick borne infections that often 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 other people who were suffering from lack of treatment, and to distinguish a doctor who was knowledgeable about Lyme and who could and would help them, from those who refused, they began telling others to see a "LLMD". (Lyme Literate MD)
As the number of reported Lyme cases increased across the country and patients were able to see positive results with extended treatment, Camp A came under fire from newly formed volunteer Lyme organizations and front-line physicians who had documented proof that the complex Lyme organisms can survive after short-term treatment. The mounting evidence concluded long-term treatment resulted in more successful outcomes for many patients.
The 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 disgruntled workers at the CDC disagreed and the bond between them and the IDSA became stronger.
Camp A doctors fussed like crazy and dug in their heels even more when they discovered physicians treating patients outside the IDSAs limited box 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 admitted Lyme was indeed a devastating and debilitating illness- a scare tactic to increase sales.
Camp A’s sudden flip-flop had them abandoning their original claims of Lyme being "no big deal" and the CDC hung close on their coat tails with dreams of financial gains dancing in their heads. Their stepped-up 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 decide to insist on a vaccine- a vaccine Camp A promoted as something that would save the world from this horrible disease.
In preparation for the vaccines release, television and newspaper advertisements began promoting Camp A's 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 so they could 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 that was 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 between members over money, positions, job benefits, and stocks, there was a serious parting of the ways between some of the good old boy network.
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.
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 inattentive response to their illness and quest for the almighty dollar. The patients believed the very ones they had trusted and paid dearly to help them regain their health, had knowingly caused them irreversible harm.
Certain 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 as a result of legal actions brought against Camp A. 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, which 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 disease that could disable or kill them.
Members of Camp A waged a full blown war on the very patients they were suppose to be helping and became consumed and obsessed with accomplishing this mission.
Camp A also 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 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 they invented for their own purposes and tried to have made "official" (and failed) - was called "antibiotic seeking behavior".
While the war raged on, insurance companies snuck in the back door and developed policies 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 doctors with a dwindling patient load spent their spare time applying for more research money and spent time in court testifying against Lyme patients and their doctors. They 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 hired PR firms that 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 instead.
The 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, often using themselves and their own literature to support their own biased theories. As the self-promotion of Camp A doctors and their baseless 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 world 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”.
Camp A's most recently published articles 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 simply click their heels together and wish away any 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, this magic pill theory should be considered a true miracle.
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, Lyme disease web sites now are booming. Camp B's websites receive approximately ¾ of a million hits a month from patients in need of assistance. Hundreds of new Lyme disease support groups 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 150,000 calls a year and membership in Lyme organizations has reached approximately 200,000.
As the public demands to know more, numerous articles and books are being 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.
Patients are donating money from their own pockets to promote Lyme disease research and education while the Camp A health departments across the country are spending billions of dollars each year on important 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 reported to be "easily cured and easily treated" by Camp A profiteers.
Unfortunately, most of us 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 has proven beyond a doubt that Lyme is a complex infection that can remain active and very destructive even after treatment. Additionally, 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 and dedication to the patient's well being, Camp B’s front-line physicians are now 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 loosing 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 loosing 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, leading to serious disabling conditions or death.
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 after they realized the treatment they were given didn’t work. These sick patients also see many of their neighbors loosing the battle with Lyme after years of pain and suffering. They have witnessed physicians who care for their health needs 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.
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Dear RM Agents and Readers,
Thumbs up to the author, well stated:)
Many Blessings,
CrystalRiver
