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» LymeNet Flash » Questions and Discussion » Medical Questions » Tick Tock, Tick Tock, Tick Tock

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Author Topic: Tick Tock, Tick Tock, Tick Tock
Tincup
Honored Contributor (10K+ posts)
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Tick Tock, Tick Tock, Tick Tock

January 3, 2011, Centreville, MD. Several decades after it was first described in the literature, the debate over Lyme disease rages on. Camp A is glued to its theory that Lyme is easy to diagnose, easy to cure, and there is no such thing as "chronic Lyme disease".

If patients remain ill after receiving cost-effective treatment protocols, Camp A feels they were misdiagnosed by their doctors- or they've surmised patients developed another similar, but unidentifiable condition.

Camp A often blames patients if they don't improve and some think patients must have acquired some sort of mental illness from their tick bite, one that makes them "think" they are sick.

When additional treatment is provided and patients actually recover, Camp A refers to that phenomenon as a placebo affect, where mixed-up, delusional patients just "think" they are better.

Camp A contends additional antibiotic treatment for a serious infectious disease like Lyme might be "dangerous" and should not be sanctioned; however, prescribing long-term antibiotics for other conditions, such as acne, is acceptable.

They have described the sometimes crippling neurologic and arthritic symptoms, heart problems, memory loss and cognitive damage chronically ill Lyme patients can experience as no more than the "aches and pains of daily living".

To bring their point home, Camp A recently was given a grant (tax-payer dollars) to review over 100 certificates listing Lyme disease as a cause of death.

Without having seen the patients, performed an autopsy or reviewed the medical charts, they systematically dismissed Lyme as the official cause of death in all but one case in order to substantiate their theory that Lyme disease is "rarely fatal".

In a continuing attempt to prove Camp A's theories have merit, lead author of the Infectious Diseases Society of America's (IDSA) Lyme disease treatment guidelines (Wormser) was recently awarded another $300,000.00 by the federal government to once again study what Camp A refers to as "post-Lyme syndrome", a condition affecting Lyme patients that looks like Lyme, has symptoms like Lyme, tests positive like Lyme, and responds to antibiotics like Lyme, but according to them, can not be Lyme.

Camp A members still promote the use of their patented Lyme tests in spite of many studies, including their own, indicating up to 75% of patients are being missed.

The tests, which generated over $3 million in sales in Maryland in one year alone, were used as Camp A's foundation for their failed vaccine and many grant-funded studies over the decades.

From these flawed studies Camp A drew "scientific" conclusions, published them and subsequently used their findings to develop what can only be described as problematic, unsuccessful treatment protocols and guideline recommendations.

Chronically ill patients and treating doctors have been subjected to wicked attacks pouring out of Camp A for years.

Retaliatory-like efforts intensified shortly after the Attorney General of Connecticut, Richard Blumenthal, launched an investigation into Camp A's guideline development process, costing Camp A much embarrassment, grief and reportedly, a pocket full of money.

As part of a settlement agreement, a Review Panel was assembled to re-evaluate the Lyme disease guidelines.

The hand-picked Panel (including Camp A's past president and Camp A members) recommended more than twenty changes be implemented when the next set of guidelines were written (2011).

It concluded the authors overstated their position or did not provide adequate documentation for their recommendations.

Rather than heed the warnings and make adjustments after being found in part to be "extremely biased" and "riddled with conflicts of interest", Camp A instead stepped up its efforts to push the same agenda with more pompous, vim and vigor.

Camp B, on the other hand, claims Lyme disease can sometimes be difficult to diagnose since standard tests are unable to accurately detect exposure in the majority of patients and current tests can not be used to determine an end-point to treatment or a cure.

As official case reports indicate, many patients don't remember being bitten by a tick and only about half of the people experienced the tell-tale rash.

Since ticks carry multiple disease-causing pathogens, the patient can be infected with parasites, bacteria and viruses, all at one time.

Camp B's growing collection of science and vast clinical experience has proven Lyme symptoms can range from mild to severe, and can mimic or be mistaken for other conditions such as fibromyalgia, chronic fatigue, MS, Parkinson's, ALS, Lupus, depression, autoimmune disorders and arthritis.

They contend each patient can present with a unique set of symptoms (based on age, medical history, coinfections, etc) and doctors should decide on an appropriate treatment protocol with that in mind.

They believe if a Lyme patient is treated with a minimal course of antibiotics and subsequently relapses with the same or worsening Lyme symptoms, the patient should be re-evaluated and then, if indicated, be provided additional treatment as would be done for any other serious infectious disease or medical condition.

Camp B's theory is there is no simple one-size-fits-all diagnostic or treatment protocol for those exposed to Lyme and tick borne diseases.

If patients are still ill after standard treatment, doctors should not have their hands tied by Camp A's insurance-friendly protocols that are not as "voluntary" as Camp A makes them out to be.

While the two camps continue to duke it out, the growing number of chronically ill patients, some who have been sick for years or even decades, are simply trying to survive the effects of the disease while the brutal Lyme wars rage on.


https://sites.google.com/site/virginialyme/press-releases-2011/tick-tock-tick-tock-tick

[ 01-04-2011, 12:33 PM: Message edited by: Tincup ]

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dyna3495
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Sorry to have to say this again, liablity is the only effective solution to abusive, destructive policy. The first order of business should be to determine the most likely target. Group A gets my vote !
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Tincup
Honored Contributor (10K+ posts)
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Yes, I agree! Decades have gone by and we are still fighting for treatment.

I wonder if diabetics had this much problem? Or those with a broken leg?

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jackie51
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Good article. Do you have the original link from the paper? I'd like to post it to my Facebook page.
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