"The new [IDSA] guidelines make it far more likely that Lyme disease will be missed in the early stages, when it is easier to treat. As a result, the guidelines set the stage for creation of a new generation of chronic Lyme disease patients, individuals with Lyme disease diagnosed and treated so late that they may never be cured." ======
Press Release Source: Lyme Disease Association Statement from Pat Smith, President, Lyme Disease Association Tuesday October 10, 10:32 am ET
New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease
JACKSON, N.J., Oct. 10 /PRNewswire/ -- The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, objects strenuously and with great alarm, to the restrictive new Clinical Practice Guidelines published this October by the Infectious Diseases Society of America (IDSA). The new guidelines make it far more likely that Lyme disease will be missed in the early stages, when it is easier to treat. As a result, the guidelines set the stage for creation of a new generation of chronic Lyme disease patients, individuals with Lyme disease diagnosed and treated so late that they may never be cured.
In a nutshell, the reckless new IDSA guidelines forbid doctors from using clinical discretion in determining whether or not patients have Lyme disease. Instead, they require that doctors either see a characteristic rash known to occur in about half the patients, or that patients register positive on the two tests recommended by the Centers for Disease Control & Prevention (CDC) -- tests known to miss up to half the patients. At any stage of disease, as many as half the patients may remain undiagnosed.
Lyme disease diagnosed late and allowed to disseminate for months or years without treatment causes severe disease that may never completely resolve. Late stage patients suffer more sequelae -- continued symptoms -- after treatment and are far more likely to fail treatment than patients diagnosed in a timely fashion, with early Lyme disease. Late-stage patients suffering chronic symptoms are frequently very sick and in great pain, often as impaired as those with congestive heart failure and sicker than people with type two diabetes.
Despite the basic math and the documented sequelae of late-diagnosed and late-treated Lyme disease, the new IDSA Guidelines state (without offering evidence or any supporting citations) that most Lyme patients are diagnosed early. This defies the experience of the LDA and of the patient community. It is also flies in the face of a study, now in press at the Journal of Evaluation in Clinical Practice, which has found that when patients fail treatment, the reason is overwhelmingly because they were diagnosed and treated late.
The IDSA guidelines also deny that chronic persistent infection exists, arbitrarily dismissing all studies documenting persistent infection after short-term therapy and ignoring mounting evidence that more treatment is beneficial in chronic cases.
Finally, the IDSA guidelines fail to even mention another set of diagnostic and treatment guidelines published by the International Lyme and Associated Diseases Society (ILADS) listed with the National Guideline Clearinghouse, which offer an alternative view of Lyme disease diagnosis and treatment.
LDA understands that the debate over the cause of chronic Lyme disease continues to be contentious and to divide those treating and studying the disease. There continue to be two standards of care. But the need to diagnose Lyme disease early enough to obtain the best treatment outcome and most favorable prognosis has never been controversial. Despite this, the IDSA guidelines are so draconian they stand poised to let many patients slip through the cracks and elude diagnosis until they are suffering late-stage, difficult-to- treat Lyme disease. As the voice of the Lyme disease patient community, LDA challenges these guidelines on humanitarian grounds.
****TOIL for Lyme**** T = Teach tolerance 0 = Overcome ignorance I = Initiate insurance reform L = Labor for Lyme literacy/advocacy
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Please tell others how to subscribe to this group: [email protected] Posted by NP40 (Member # 6711) on :
Well, there's little doubt now that the IDSA has openly declared war on the lyme community. Of course, their basically shilling for their real masters, the insurance industry.
It's easy to see how this has become "personal" with the IDSA. Constantly being told their wrong and incompetent has made them push back with drastic measures.
I would venture to guess some of our legislative victories, new, irrefutable evidence of long-term abx efficacy and the hundreds of thousands of living testaments to that efficacy has them in full blown "panic" mode.
This is a prelude to Dr. Fallon's study and an attempt to protect their own bruised ego's.
They have no evidence to support any of their claims and these new guidelines of their's are a blatant attempt at retribution against the lyme community.
Look, we have nothing to fear from these people. GP's don't treat lyme now and the IDSA guidelines won't change anything.
Their own incompetence, greed and callousness will be their downfall.
I'm actually glad that they have codified openly, these abominable guidelines so folks afflicted with lyme will have easy access to the materials necessary to pursue future lawsuits against the IDSA and the sychophants who sit on it's board.
They'll swell our numbers making the lyme community all the more powerful and determined to get adequate care and recognition. It's a monumental blunder on their part.
Unfortunately, their appeasement to the almighty altar of profit will doom hundreds of thousands to years of pain, despair and misery.
Hundreds of thousands that will be looking for those responsible for their suffering.
First they ignore you, then they laugh at you, then they fight you, then you win. Gandhi Posted by northstar (Member # 7911) on :
"New IDSA Guidelines Forbid Doctors From Using Clinical Discretion in Diagnosing Lyme Disease "
FORBID ?????
freakin fascists.
they just painted themselves into a corner.
N/
Posted by NP40 (Member # 6711) on :
If the IDSA continues into further panic, here's their next set of guidleines:
For a positive WB:
All bands must be positive. Must clear a Munchausen by Proxy screening. Kiss Steere's ring. Offer a dowry to Yale for $50,000,000. Walk on water. Have a bullseye rash.
For treatment: An initial one day regimen of milkshakes.
For stubborn cases: Ten to twenty eight days of milkshakes.
For co-infections: Never heard of them.
Mycoplasma: You're a hypochondriatic housewife.
Erlichiosis: We don't have ticks in___________________{Name State Here}
Bartonella: You need to find a hobby and quit worrying.
Lyme: You're nuts !
Babesia: You're REALLY nuts !
Ongoing symptoms: Gas. Posted by Robin123 (Member # 9197) on :
NP40 -- Wonderful! I nominate you for class clown! You're one step ahead of the IDSA -- little do they realize they've missed the mark on guidelines. Well, maybe next year... LMAO!
Posted by humanbeing (Member # 8572) on :
NP you're a hoot.
I think the guidelines are arrogant and represent the closed mids lurking behind them.
I have a little boy and when his pride is on the line he puffs up with bravado--he would rather die than admit he is wrong.
Medicine is an ART and a science...mostly an ART.
This is a sin...I would like to see the courts flooded with lawsuits of misdiagnosed patients dragging their bewildered docs with them as they cling to their guidelines.
Maybe the new lyme film will make a strong ending with the new guidelines...it would be a perfect contrast to the portrayals of desperate patients.
God help us...
Posted by Takedownthemoon (Member # 9008) on :
Is there a humanitarian rights group for people suffering from Lyme?
Posted by Robin123 (Member # 9197) on :
MRB -- a new imdustry -- bull's eye rash creations. Stick-ons, markers, tattoos, creative mediums. We could have a contest for most realistic-looking artistic rash. And teach-ins too for newbies and prenewbies. Get your rash -- get your Lyme diagnosis! Come one, come all!
Posted by minoucat (Member # 5175) on :
Prepare for new battles with your insurance companies, even those who were successful with their appeals and are now receiving disability for LD or having their medications paid for.
That's what this is really about -- who has to pay for what.
Posted by jggrl (Member # 9470) on :
MRB and Robin--sign me up! Realistic bulls-eye rash creating industry, here we come! Posted by JimBoB (Member # 8454) on :
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![[woohoo]](graemlins/woohoo.gif)
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