CAMP A and CAMP B

The Lyme Disease Controversy

People who are 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 these people 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, without proper testing, a definitive diagnosis, or a proper 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 patients best interest at heart. Instead, 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 numbers
of patients to become chronically ill and disabled by ignoring obvious Lyme symptoms,
disputing test results from experienced labs, and prescribing drugs 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 continues to surface
proving these dinosaurs' original theories obsolete, however, they 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 treating the devastated Lyme
patients are saddled with increasing numbers of extremely ill people who shouldn?t have
ended up in that leaky boat. For the sake of the almighty dollar, the floundering medical
misfits in Camp A have allowed the Lyme controversy to drag on for over 20 years.
While patients in their hands needlessly suffer and go untreated, Camp A dismisses any
research that contradicts their original asinine conclusions.

Camp A reports Lyme disease is, "over diagnosed and over treated". They have
concluded that if someone is bitten by a deer tick they should "wait and see" if the
organisms disseminate and cause symptoms before addressing the situation. They ignore
research that has proven the Lyme spirochetes can travel to the spinal fluid within days
and time is of the essence if treatment is to have a chance. Camp A requires Lyme
patients to prove there was a deer tick bite in conjunction with a typical "bulls-eye rash", and be positive on two different blood tests. Research has shown that less than 50
percent of patients with Lyme recall a tick bite and less than 50 percent develop a rash.
The standard lab tests used by Camp A miss as many as 80 percent of those who actually
have Lyme and are notorious for 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 active or chronic Lyme but one or more active co-infections, are often told
they are faking or malingering and are ordered to go back to their normal routines
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 the problems, Lyme patients often must endure a multitude of invasive tests
which are intended to try and rule out an obvious case of Lyme (the "anything but Lyme
syndrome"). As time progresses and the infections become worse, 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 body.

Years ago, Camp A first speculated that antibiotics would not work on patients with
Lyme disease, therefore, many patients were not treated. Concerned front line physicians
discovered no research proving that assumption and discovered they could successfully
treat the growing numbers of serious ill Lyme patients with antibiotics. Camp A, walking
about with egg on their face at that point, dilly-dallied about until they were eventually
forced to jump on the band wagon and declare, yes, a short course of antibiotics would
cure Lyme disease. As Lyme patients began returning to doctors waiting rooms when
short courses of antibiotics failed, retreatment or longer courses of antibiotics were found 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 protocols adversely affected
thousands of patients and their families. In turn, countless numbers of patients
suffered from chronic Lyme infections, often resulting in permanent damage and/or
death. In desperation, patients searched world wide for physicians who would help them
properly address their ongoing infections and multiple symptoms. As the number of
Lyme cases increased across the country and some patients were able to see positive
results with proper treatment, Camp A came under fire from newly formed Lyme
organizations and front line physicians who had documented proof that the infectious
organisms often survive after short term treatment. The mounting evidence gathered
concluded that long term treatment resulted in more successful outcomes for many
patients. They noted that it was not only necessary to treat the chronically ill, but it was the humane thing to do.

Camp A doctors dug in their heels when they discovered physicians in other areas had
proven them wrong again. The good news that patients could improve with longer
courses of treatment fell on deaf ears. 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 views and suddenly admitted Lyme was indeed a devastating and
debilitating illness. Camp A suddenly flip flopped and abandoned their original claims
of "no big deal" as they promoted their recently developed vaccine that would save the
world from a horrible disease.

Television and newspaper advertisements began promoting Camp A?'s new vaccine and
Lyme disease quickly became a household word. Some members in Camp A, no doubt
with an eye on their precious bank accounts, also found time to promote their newly
developed lab tests, claiming a quicker and more accurate result. As Camp A raced to
file patents and collect on their inventions, they padded the medical journals with their
detailed reports about the unremitting consequences and serious nature of Lyme disease. Finally feeling they were back on top of the Lyme world, they convinced the CDC, major university hospitals, and unsuspecting physicians to promote their vaccine. Little did they realize, while in their haste to line their pockets, their apple cart was preparing to topple once again.

After reports of serious problems surfaced, the FDA issued warnings about certain Lyme
disease tests and cautioned physicians and the public not to rely solely on these tests
when diagnosing Lyme disease. 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. The lab tests and
the 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 in Camp A, internal battles over
money, positions, job benefits, and stocks ensued. As the fires raged, there was a serious parting of the ways between some of the members of Camp A's former good old boy
network. One after another, Camp A associates put their tails between their legs and
scattered near and far, while back in the kitchen the fires were burning out of control.

Lyme patients, realizing the atrocities they had been subjected to, were filing complaints
and initiating legal actions against Camp A doctors and the 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 were awarded to disabled
victims as a result of legal actions. Attorneys, on behalf of patients who died or 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 began the "cover your rump"
campaign which consisted of shouting to anyone who would listen, true or not, that Lyme
was, once again, over diagnosed and over treated. Having backed themselves in a
corner, Camp A tried to convince the public that patients suffered more from
"Lyme anxiety" instead of a serious infectious disease that could disable or kill them.

Camp A tried to convince other physicians and patients that positive tests for Lyme were
often false positives and labs that specialized in detecting tick borne diseases were faulty for one reason or another. They buddied up with insurance companies who were
delighted to discuss any dollar saving tactics that were hidden up the sleeves of Camp A
leaders. 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 mental disorder
called, "antibiotic seeking behavior". This bad publicity allowed insurance companies to
sneak in and develop guidelines that would reduce the length of time (and money)
needed to treat Lyme patients for active infections. Camp A doctors with a dwindling
patient load spent their spare time in court testifying against Lyme patients. Some, who
obviously had high opinions of themselves and too much time on their hands, testified
against front line physicians who had been successfully treating chronically ill Lyme
patients in an attempt to discredit them in the public's eye.

In order to try and gain credibility, Camp A doctors also granted press interviews and
sparked a miniature media frenzy around themselves. To insure their views concerning
Lyme would be taken seriously, some Camp A doctors announced they actually needed
body guards to protect them from Lyme patients who didn't really have Lyme, but some
sort of mental illness instead. The literature coming from Camp A once again promoted the false assumption that the treatment time required to cure Lyme should be shortened dramatically and in turn, their new best friends, the insurance companies, placed them high on their pedestals.

In an attempt to boost their credibility, Camp A members continued to publish additional
papers. Evidently, their attempts to mislead other physicians and the public failed
miserably and they resorted to using themselves as their own references in reports. As the self-promotion of Camp A doctors became unbearable, hundreds of chronically sick
and disabled patients from across the county gathered together and peacefully protested
Camp A meetings. Adding insult to injury, some of the world's leading tick borne
disease specialists walked out of a Camp A conference in NY City in protest, claiming
the Camp A conference was spewing nothing more than hog wash.

Camp A deserves some credit for coming close to being successful in one arena. Flip
flopping about over the years has allowed them to have nearly completed a full circle in
their little world of Lyme disease. Some of their most recently published articles claims
that only ONE dose of Doxycycline is needed to prevent Lyme disease, and oh what a
magic pill it must be, indeed! Perhaps if Camp A continues on their stroll backwards
through time, anyone with a tick bite may soon be able to simply click their heels
together and wish away any serious 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 should be considered a true miracle.

In the meantime...

Camp B, unfortunately growing larger by the day, disagrees wholeheartedly with Camp A
on many points. Camp B knows through personal experience and scientific research that Lyme
disease can be a complicated 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 and receive approximately one half of a million hits a month from patients in need of assistance with tick borne diseases. Hundreds of new Lyme education and support groups have formed across the country and the leaders report being overwhelmed by the growing numbers of terribly ill patients they see who were 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 100,000 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 sucks up available grant money to try and support their antiquated notions, private groups across the country are holding dinners, dances, walk-a-thon's and other fund raisers and are donating money for the serious help needed with Lyme disease research.

The Camp B physicians on the front lines are increasingly overwhelmed with the
numbers of new cases of tick borne disease patients showing up in the United States.
Many of their patients come to them already severely and chronically ill after following
the outdated protocols and recommendations of Camp A. As the diseases within them
take a stronger hold, patients are suffering and dying from a disease reported to be "easily cured and easily treated" by Camp A followers.

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 destructive after treatment. In addition, Lyme may be complicated by
other tick borne infections, yet Camp A followers continue to promote their flawed
reasoning and protocols.

Members of Camp B have learned the hard way that Lyme is not, "over diagnosed,
over treated, or easily cured". Many 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 front-line physicians are now under pressure and direct attack for treating patients with chronic Lyme disease. They are ridiculed by their peers, investigated by medical boards, and are threatened with loosing their licenses if they treat patients who have suffered at the hands of Camp A. So why do Camp A doctors still refuse to diagnose or treat a serious debilitating infectious disease or check for and treat co-infections that may be complicating the picture?

The answer is simple, but shameful. One reason for this atrocity is that some of them
haven't kept abreast of, or are ignoring years of medical research and documentation that
proves them wrong. In addition, many in Camp A refuse to actually listen to their own
patients and continually dismiss complaints and ongoing symptoms. The third reason is
that Camp A doctors may be in fear of loosing their medical licenses and livelihoods if
they don't stick to their guns and continue to support their original mistakes. After all,
some of the successful Lyme disease lawsuits against doctors were for not properly
diagnosing and treating Lyme disease. Lastly, insurance companies are loosing money
when treating chronic Lyme patients and we all know that hurts a good number of
powerful pocket books and ultimately influences the course and cost of treatment.

Why should you be concerned about the situation? There are growing numbers of
chronically ill and disabled children and adults still stumbling out of Camp A after they have been improperly tested or treated for tick borne illnesses. More people are loosing the battle with Lyme disease after years of pain and suffering. Physicians who are brave enough and concerned enough to care for these patients are being harassed, ridiculed, and shut down. The madness must stop.

Bottom line...

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

I could probably try to shorten it, but am afraid I would ruin it. You know exactly on what the emphasis should be - can you shorten it somewhat? Most the time, less said is more effective.

By no means do I want to be critical of your hard work - just want to get the best effect
and am ready to deliver it to all of them, including the Dean of Infectious Disease at the University of Washington and a few of these others that stole years out of our lives because of ignorance.

I have a big mouth you said?

I talk way too much you said?

Geepers creepers! I didn't know THAT!

hehehe

Yes.. WAY too long. I think I was just super frustrated and just kept rattling off... I TEND to do that ya know...

I will do a cut and slice job on it for you and those who could maybe use it. Hey... If you will use it.. I will certainly try and do what I can!

Give me a bit... I am not functioning on all fours right now... ok?

I read this before and love it. You really hit it dead on. I don't know much about lyme's past as I am new, but learning all the time. This gives newbies the history and helps us understand what the hell is going on.

Cause this desease, blew my mind and then the medical and political part took me a long time to absorb, because it is unreal and someone should make a movie on the whole thing for hollywood and they would make millions to lyme research.

I assume that you composed it as a word document and then tried to import it, but that the lines didn't formate properly.

Perhaps, you could just re-compose it (from the hard copy of the rough draft) right here at LymeNet, so that it fits the width of the LymeNet page format a little better.

That way, it will print out in fewer pages.

It might even be that a few individuals here will be inspired to compose their own version of this and add in a list of references to impress those doctors who like to see a list of references.

Are we having fun yet, or what??!!

PS - Whoops! Nevermind. I didn't see the date on this. I'm sure you're pretty tired of revising it by now. Leave well enough alone. If I (or anyone else) decide(s) to use it, then we can reformat it for ourselves and add whatever extra references we want.

I have printed this for future reference, and if it's OK with you, Tincup, I may send this in to some UK magazines or newspapers. (I would have to slightly alter it first).

Would you consider putting sitations in your article? Documetn where you get your facts?

My Bro is a good man, but he fits this discreption:

As time progresses and the infections become worse, 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 body.

I am tired of being treated like a nut. And now that my kids have it I don't know if my husband will even want to be around my family.

Anyway--it is a wonderful article and if it had sitations it might actually sway him.