posted
I am so confused and I am turning to you all for help in understanding why some doctors think Dr. B and other LLMD's are a bunch of quacks???
I always thought medicine was a science and that all doctors pretty much agree on how to properly treat something that goes wrong with the human body.
Why the heck is there so much controversy with Lyme and how to treat it properly?
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Lyme Disease: Two Standards of Care
By Lorraine Johnson, JD, MBA Executive Director, CALDA (California Lyme Disease Association) Updated February, 2005
The central difficulties in the diagnosis and treatment of Lyme disease stem from the lack of sufficiently sensitive and reliable biological markers of the disease. Without such markers, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the end point of treatment. The ideal antibiotics, route of administration, and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.[1-3]
Opinion within the medical community is deeply divided regarding the best approach for treating Lyme disease, particularly persistent Lyme disease that is not cured by short-term protocols. This split has resulted in two standards of care. Both viewpoints are reflected in peer-reviewed, evidence-based guidelines. Some physicians treat patients for 30 days only and assume that remaining symptoms reflect a self-perpetuating autoimmune response.[4] Other physicians assume that the persistent symptoms reflect on-going infection and gauge the duration of treatment by the patient's individual clinical response. These physicians believe that there is insufficient evidence at this point to adopt standardized treatment protocols.[5]
While each viewpoint has a strong underlying hypothesis, the scientific evidence supporting either viewpoint is equivocal. Outcomes research is limited and conflicting. The NIAID has only funded three double-blind, placebo-controlled treatment outcome studies for long-term treatment of persistent Lyme disease. The findings of two studies (Klempner and Krupp) are contradictory, with one indicating that continued treatment is beneficial for treating fatigue and the other indicating that it is not.[6-8] The third NIAID-funded study has recently been completed and preliminary results support continued antibiotic treatment for patients with persistent Lyme disease.[9] The findings of five non-controlled studies support continued treatment.[1, 10-13] The existence of limited or conflicting controlled studies is not uncommon in the practice of medicine. Where this is the case, the unique clinical course of the patient, of necessity, bears the laboring oar in treatment decisions.
Insurance companies have placed the full weight of their economic clout behind the less expensive short-term treatment protocols. More expensive longer-term treatment options are discredited as "experimental" or "not evidence-based." The point, of course, is that the science underlying both the short-term and the longer-term treatment options is equally uncertain (like prostate cancer). The appropriate response to equivocal research findings in healthcare outcomes is to fund more research. It is estimated that only 20% of medicine practiced today is rooted in double-blind studies.[14] The bulk of medicine today is practiced in the grey zone. Evidence-based medicine requires only that medicine be practiced in accordance with the evidence that currently exists, not that treatment be withheld pending research.
Insurance companies have adopted guidelines reflecting short-term treatment approaches. However, the legal standard of care for treating a condition is determined by the consensus of physicians who actually treat patients, not by treatment guidelines.[15] Moreover, more than one standard of care may exist. A number of surveys have found a fairly even split among treating physicians. One survey found that 57% of responding physicians treat persistent Lyme disease for three months or more.[16] Fallon notes that for over 3400 patients screened for the Columbia University study of persistent Lyme disease, the mean duration of IV treatment was 2.3 months and the mean duration of oral antibiotic therapy was 7.5 months.[6] In another survey, ``50% of the responders considered using antibiotics for a time greater than one year in a symptomatic seropositive Lyme disease patient. Almost that same number would extend therapy to 18 months if needed.''[17] For treating early Lyme disease, there are conflicting surveys. Most physicians responding to one survey specified short-term treatment[18], while 43% of those responding to another survey would treat erythema migrans-positive Lyme disease for three months or more.[16] All jurisdictions that have considered the matter have found two standards of care in the treatment of Lyme disease.[19]
When more than one standard of care exists, the critical question becomes who decides the appropriate course of treatment for the patient. Under the medical ethical principle of autonomy, the treatment decision belongs to the patient. Hence, the American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the proposed treatment, but also the risks and benefits of available alternative treatments (regardless of their cost or the extent to which the treatment options are covered by health insurance).[20] For example, patients with prostate cancer (where significant uncertainty exists regarding long-term treatment outcomes) must elect between watchful waiting, radiation and surgery. The legal doctrine of informed consent also requires that patients be advised of material treatment options. Treatment choices involve trade-offs between the risks and benefits of treatment options that only patients-who know the kinds of risks they are willing to run and the types of quality of life outcomes that matter to them-are uniquely suited to make.
Sound health care policy follows suit, with healthcare costs generally witnessing a reduction when the patient's preference is supported. Patient preference exists whenever there is more than one acceptable treatment approach. When inefficiencies in the Medicare system were analyzed by looking at small area variations in medical practice, most variation in preference-sensitive care was found to reflect physician opinion. In patient preference situations, patient and provider values are often in conflict and public healthcare researchers recommend reducing the medical practice variations in these situations by ``reduc[ing] scientific uncertainty through outcomes research... and establish[ing] shared decision-making for preference-based treatments.''[21]
Respect for the basic autonomy of the patient is a fundamental principle of medical ethics. Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients cannot act autonomously. Today, however, many patients are either denied treatment by their HMO physicians who follow actuarial treatment protocols generated to keep treatment costs down, or they must find an independent physician to treat them, with the all but forgone conclusion that coverage for this treatment will be denied by their insurer based on cherry-picked (economically favorable) guidelines. Moreover, HMO physicians generally do not advise their patients that treatment alternatives exist.
Scientific uncertainty about Lyme disease has resulted in more than one treatment approach (like prostate cancer). We agree with the AMA, ACP and other professional medical organizations interested in promoting informed patient consent and want to make sure that:
* Physicians, insurers, patients and governmental agencies are educated that two treatment approaches exist; * Physicians give patients sufficient information about treatment options to enable patients to make a meaningfully informed choice and respect the autonomy of that choice; * Insurance reimbursement be provided for treatment rendered in accordance with either standard of care; and * Government agencies provide unbiased information and remain neutral regarding both standards of care and treatment approaches.
....
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.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Something else that might help you and I think everyone with Lyme should see...is the documentary...Under Our Skin...
its on DVD....
just my 2cents... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Please get a copy of Pam Weintraub's new book
CURE UNKNOWN.
It will tell you everything that you need to know or should know if you or a loved one has or suspects Lyme.
There is NO disease in the world that is as political, controversial and full of mis-information, specifically from main street doctors and insurance companies.
Lyme is very common and very real. People get bit by a tick and some never get their life back.
Please get and read Pam's book. It is incredible and so well written.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
it will bring up a link for 33 pages of a wonderful detailed article written by a LYMIE article reporter! excellent.
i can't read lorraine johnson's post so just SOB the entire thing; too ba; sure it has good info in it, but not formatted for us NEURO LYMIES to be able to comprehend and read....
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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There are some very good links to articles explaining that at this current thread:
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
My LLMD simply put it like this, "In Med school Md's are not trained in medical school about these crazy diseases, what is a doctor to think when all blood tests are normal and there appears to be no reason for symptoms? Not to mention all the co-infections which they are totally unaware of".
Md's are taught in medical school to NEVER say "I don't know what this is!" They are trained to think that it is psychosomatic and the patient has deep psychological problems creating these imaginary symptoms.
Lyme presents a thousand different ways...it is impossible for Md's to understand the never ending mix of symptoms...and rarely two people reporting identical symptoms. It isn't cut and dry as saying I have a sore throat and they know it is strep.
Multi-system and multi-symptom problems "without proof" and a VERY unreliable test make for Md's to think the patient is crazy. But they need to stay in the loop of LD and the co-infections, study it and even read the CDC website that plainly says their test is garbage and not to rely on it for diagnosis.
Md's think LD is a simple bug bite cured in a couple of weeks of abx. But all agree that if not treated right away it can lead to more serious illness. So the IDSA believes if you aren't well in 30 days you never will be and will have to live what they call "post lyme syndrome". They don't acknowledge the fact that important bands were removed from the CDC WB, bands so important a vaccine was made from them, but made the test to useless for diagnosis. Nor do they understand that many patients don't remember being bitten or seeing a bullseye rash. Why don't they take into consideration the facts that people can be bitten in hidden places, scalp, armpits, groin area and rashes can also be hidden or never appear. These ticks can be so small, we'd never know we were bitten until we were very sick..so small in fact they can be the size of the period at the end of this sentence.
They want proof...the bite, the rash and even if they do have proof they will not treat correctly if at all.
ILADS.org a group of Lyme literate Md's are PROVING that long term abx can make people well with mountains of evidence. Read both pages: http://www.ilads.org/basic.html
Members of the IDSA were recently found to be corrupt in their design of treatment guidelines of Lyme..proving the lyme patient and ILADS has been right all along. They don't acknowledge the fact that this bacteria is a "stealthy" bacteria that takes many shapes, cell wall deficient, L-form cystic form and 300 strains worldwide.
Lyme was only discovered and in the 70's and the first woman to report it was told to see a shrink.
After the bacteria was actually discovered, Md's believed like any bacteria it would die quickly on abx. But many diseases require long term treatment, syphilis, Hepatitis, Tuberculosis even acne they will treat with Doxy for years..but for some inexplicable reason the IDSA doesn't understand - the disease can become chronic -the bacteria needs long term treatment and co-infections need to be treated as well until the patient is symptom free.
It's a mess...the quacks are the Md's who think you are crazy for saying you have nothing wrong when you KNOW there is something very wrong.
We could talk all day about the reasons the IDSA is wrong - and this is become a political battle, not a scientific one.
As Dr. H says in the lyme documentary "under our skin"...while they are all battling, the patients are suffering.
Thank God for those doctor's who understand Lyme and treat it long term....without them we wouldn't stand a chance.
quote:Originally posted by lymebytes: My LLMD simply put it like this, "In Med school Md's are not trained in medical school about these crazy diseases, what is a doctor to think when all blood tests are normal and there appears to be no reason for symptoms? Not to mention all the co-infections which they are totally unaware of".
Md's are taught in medical school to NEVER say "I don't know what this is!" They are trained to think that it is psychosomatic and the patient has deep psychological problems creating these imaginary symptoms.
This would be true if your post was written in 1950.
Med school has not been taught like this in the last 20 or so years.
Dr's are not trained to never believe they don't know what it is or to dx an illness as psychosomatic.
There is a curriculum in med school on how to treat "unknown" origins organic or otherwise with a "fine tooth comb".
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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this also goes beyond germs - which, alone, is far more complex than I think most doctors ever expected.
I tend to see also the connection to the liver. Without a good, working liver, healing from infections is very difficult. Yet, infections attack the liver, so treatment is vital.
Now (don't hit me, but) some of the doctors unwilling to look into long-term treatment may be concerned about the effects of Rx on the liver. And that's a valid concern - but they also don't realize that NOT treating is far worse.
they also may not realize that much of the risk or stress on the liver may be minimized with liver support (such as with milk thistle, glutathione) and detox measures such as charcoal tablets, cholestyramine, etc.
and . . . also a great puzzle that many have not figured out is the effect of excess porphyrins when the liver's detox pathway, Cytochrome P-450 is not working as well as it should or is simply overburdened.
since most doctors have never even heard of the many types of genetic porphryia, understanding does not come easy regarding secondary or acquired porphryia - or even just increased porphyrins or toxins in general - in a population that they'd just as soon ignore anyway.
So, with treatment of chronic infections comes attention to and understanding of the liver and toxins from Rx, from infections and porphyrins - again - beyond what they teach in medical school.
Actually, considering the way our medical system has been set up, it simply is not able to treat complex conditions effectively.
posted
The Camp A Camp B theory makes the most sense to me.
It is really spelled out in layman's terms.
Still i question why these LLMD's do not take insurance?
All other doctors that I have ever been to always take insurance. The Lyme controversy sucks.
Frustrating.
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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Greatcod
Unregistered
posted
Most mainstread doctors have no knowledge of the ILADS position, or of all the studies demonstrating Lyme peristence. IDSA is the medical establishment, and they establish the standard of care. Most docs just follow their path and thus cover their butts. They are not bad people, simply uninformed.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
My health went south in 2001. I still don't understand the medical field as a whole.
I do know we are not alone.
I recall listening to Chris Reeves talk about the obstacles he was trying to overcome with the politics, finances, insurance, science, etc with the medical field.
It is not something most people are aware of until it hits home.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
Our medical system is Broken -
Watch this PBS FrontLine program its one hour long and shows how other countries health system do things--
Named - Sick Around the World
Click on the where it says Watch full Program in yellow on PBS page -Jay-
quote:Originally posted by evergreen: Hey peacesoul, If what you say is true how come I've had to criss-cross N. America looking for answers, become significantly poorer paying out of pocket and submit myself to humiliation from the very professionals I had put such faith in? Peace!!
bad luck! I have no idea. You criss corssed north America? So you came to Canada?!
I've been in the medical system for over 14 yrs with unknown illness and though dr's were baffled and had no idea why I was ill, they never once humiliated me and my experience had nothing to do with luck.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Luck has a great deal to do with it in the U.S. The nicest, most positive people with even perfect self-care are not exempt from dehumanizing treatment.
Humiliation is nearly a requirement of the standard of U.S. medical care. Beyond coming from the doctors, it's intrinsic in the system itself.
You are very lucky not to have had that as one of the top 3 ingredients in your care in Canada.
The humiliation usually comes from the disbelief and outright disgust on the part of far too many doctors towards patients with chronic and complex health problems.
To be fair to the good doctors out there this is not 100% of the time nor with 100% of the doctors. But it has become typical. I really think they must take a course in this.
This is just one reason why some wise and good doctors choose to not be part of the insurance system and go into private practice. Not only is the demeaning behavior built into the medical system, the insurance industry seems to have found a way to perfect it.
And the medical schools - here in the U.S. - do not teach about this. I have a med school just a few miles from me - many doctors here have told me they simply don't teach this.
What makes it worse is that this medical school is in a state where the official word is that "there is no lyme in this state" and "even if a patient were to have lyme, it burns itself out in 3 weeks' time with or without medicine."
Yep. That's what they say at the medical school here.
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[ 04. July 2008, 12:17 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Canada is in North America as well as Mexico, the United States, and Greenland, isn't it?
Perhaps, you are meaning to say "The United States of America".
I have not been impressed with the medical care in Canada just because I have been misdiagnosed for years while my health deteriorated. And after reaching the "go see a psychiatrist" point after the other tests didn't turn up what was wrong, I was not offered anything else in an attempt at diagnosis. Just the lame "chronic fatigue" thing.
Posts: 590 | From Canada | Registered: Oct 2007
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posted
I have been humiliated 4 times on my long horrifing journey, wait make it 5.
1. Shook my belly like a bowl of jello and said "This is your problem".
2. After prescribing I wear support hose for swollen ankles and edema, said you don't have edema or your ankles would be swollen, you are just fat.
3. Urologist said call me next week and I will advise CT results. I called every day but Monday and he would not call me back. Had to have my husband call and make him call me with results.
4. Gastrologist acted all weird like I was following him cause I GOT ON SAME ELEVATOR. Was supposed to schedule an endoscopey but would not return call, even to referring doctor. He dumped me.
5. Chastised me for crying in pain with a bleeding ulcer because his last patient just found out her breast cancer had returned.
Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Here's another really good description of the history behind the 'Lyme Wars', from a Connecticut political blog:
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The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
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mtree
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