LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Tincup wrote this and I think it explains it all well:
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.
[This message has been edited by Tincup (edited 29 November 2003).]
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am just looking forward to the day when someone with the lyme symptoms can go to the medical field and get help.
had another thought but telfon mind.
Ah yes. I worked as a teacher in a low level prison when I had a bite with a ring around it on my arm.
I had a student with a bite with a ring around it on his leg a few days earlier.
He asked if he could see medical on site.
I called and they said to send him right in. he came back with abx.
I was in shock. I had students who were in much worse shape and ignored by medical.
I later learned from 2 nurses on site that they treat for lyme and company all the time at the prison.
So what is wrong with this picture??
Why did it take over 35 doctor's and 18 months to learn why I could no longer work or do household chores and start treatment by main stream medical??
Why did I need to pay out of pocket to get the help I needed when I was paying almost $800 a month for health premiums?
Why if I were a dog with the symptoms I had, I would have been taken to a vet and gotten treatment right away and tested instead of being prescribed antidepressants which depressed me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
That's an interesting story, kam, that they treat for Lyme and company all the time in the prison.
What's with that? Why do they treat there? I mean, obviously, they should treat all of us. So how is it that treatment's happening there?
Posts: 13171 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I don't know. I tried to get letters from the medical on site to support my workmens' comp claim and they went into a black hole.
They also closed three yards down due to bartonella...feral cats on site causing rashes and fevers and symptoms.
They immediately treat with abx.
I am assuming they catch it early.
Mice in class roooms also.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
So then they are aware of the medical problem...
Posts: 13171 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Yes.
But, when I went to my primary doctor's office I was told there is no lyme here.....only 5 min away if that.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
The documentary Under Our Skin explains a lot of the reasoning behind doctor's unwillingness to help us as does the book Cure Unknown.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
So, vets recognize these diseases, this prison (and probably others) recognizes these diseases, a former president's doctors call our LLMDs for treatment help -
Seems to me they all know what's going on, but it's for political reasons we don't get recognized.
So they know they're not telling the truth when they say there's no Lyme here.
Posts: 13171 | From San Francisco | Registered: May 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I wrote something lengthy on this subject and tried to post it today and got a message that I couldn't post it. I asked why earlier today in this forum, or activism forum, or medical.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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bettyg
Unregistered
posted
read my answer in COMPUTER QUESTIONS....
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posted
so: it's the doctors' lack of courage, this stronghold that the IDSA guidelines have on the treatment of lyme disease?
This is called politics. and if we want to get into the profiling the individual culprits, it's most likely about Power and Control.
Why it is the way it is with LYme disease, I surmise has a lot to do with who discovered it. Then, in turn, the exclusive teaching of this in medical schools.
Until the research grows and accurate testing is developed, standards of care outside the IDSA guidelines, evolving knowledge and physicians' experience ---
will not be presented in Continuing Education courses that physicians take. They still refer to lyme disease in terms that they did in the 80s.
The education is circular--circles right back to the 1980s. Yes, some doctors are ignorant for a reason.
In addition to politics-- Research is a problem.
According to a NY/MA doctor-- the government historically doesn't take on research using public funds until research in the private sector piques their interest (translation: there's something in it for them).
This is very difficult to describe. It's a very complex issue.
Believe me, as lyme px in Massachusetts have been having a devil of a time conveying why there is a climate of fear in long-term administration of abx for disseminated lyme disease.
At least one Mass LLMDs' attorneys advised against giving testimony at the hearing. Going on record can be a death knell for a doctor's practice and future means to make a living.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
oh, and a note about the hearing in Mass on Tuesday.
When a co-sponser (rep) of the bill made reference to lyme science being an "evolving science",
One of the doctors representing the antiquated IDSA stance, made an off-handed statement about how 100 yrs from now, looking back (if he could), he very well may see that he was 100% wrong.
Yet he's testifying to block protection of doctors.
Their attitude is "why should lyme need special legislation when other diseases don't?". Very innocent seeming, right?
When their activity causes a climate in which it is unfavorable for doctors to use their best clincial judgment.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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It pains me to think that all these mainstream doctors are ignoring their oath to "Do No Harm".
How can they all live with themselves? I know it is easy for me to just sit here and say this, and yet I believe that I could not do that if I were a doctor.
At the least these doctors should be writing to the CDC and the IDSA explaining that they are seeing magnitudes of ppl that may have Lyme or that they believe have Lyme and feel like they are being held hostage by their guidelines.
Lyme is everywhere and yet there are so many doctors out there that are not even willing to test for it, let alone learn about it. I had one doctor that refused to even test me because she said there was so much controversy around the testing alone that she did not believe in it.
I said, do you believe in Lyme? Do you believe it even exists. She would not answer and kept changing the subject. You see they don't want to even touch the subject.
It's as if we have the plague or something. Disgusting doctors. I knew in my heart that the doctor did believe you can get Lyme, but she wanted to put a band-aid on the problem and send me on my way to 19 of the other specialists that I had to see to figure out what the heck was wrong with me.
The doctors must bear some of the responsibility. We should be pressuring our doctors(the ones we had, before we had to start going to LLMD's).
We need to somehow force it on them and make them bear some of the responsibility for letting us keep slipping through the cracks.
Obviously the IDSA is not budging.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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posted
oh, yes. Definitely. My sister was misdiagnosed for upwards of a decade and is endeavoring to write letters to each and every doctor, specialist and facility.
There are some PCPs that do see such a magnitude of patients in their area that they have no choice but to treat in some way. And I was fortunate enough to meet one who did.
Although not a LLMD, he clinically dx'd me and treated to the best (or most conservative) of his knowledge until I could see the lyme specialist he referred me out to (self-referral really, he just signed off on it).
Doctors are afraid though. I really don't know how that climate will change. Not until more research is done? I dunno.....they definitely aren't upholding their oath, that is for sure. I agree....
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Their attitude is "why should lyme need special legislation when other diseases don't?".
May I answer that?
Because a hand full of duck heads have put themselves in charge of this disease, have ego's the size of the Pacific Ocean, have patented it to profit from it...
Have been in bed with strange fellows with deep pockets and have stood by and watched as people suffered and died from a TREATABLE disease.
Somebody needs to step up to the plate and say enough is enough.
The duckheads are certainly NOT listening to the millions who remain ill after failing to recover after being prescribed the IDSA's COST-EFFECTIVE, unproven treatment protocol.
So if it takes going to the top to make things right...
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