What you can do to help lash back at the new Lyme guidelines!!

[Guest guest]

Dawn,

Just got this from Ginger. Will you please put this on the grapevine for me. I

have to leave in a few minutes and will be tied up all evening.

Thanks

K.

" Speaking as an Individual Lyme Patient "

What you can do to help lash back at the new Lyme guidelines!!

Dear ones:

Please, please contact your newspapers and see if you can get them to carry the

following press release. The IDSA (Infectious Diseases Society of America)

meeting is this week and no doubt the newswires will carry their PR very soon.

This is a chance for us to get our story out. The new IDSA Lyme guidelines are

very bad, make no bones about it. We need to challenge them. Please share on

this group any efforts you make and name the papers so we will have an idea of

who is doing what. To find emails and websites and contact info about papers in

the US, go to http://www.usnpl.com/ and click on your state. Papers usually

prefer receiving articles in the body of an email rather than as attachments.

FYI, a pdf of the complete guidelines can be obtained at

http://www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.web.pdf

Lyme Disease Association, Inc.

PO Box 1438, , New Jersey 08527

888-366-6611 Lymeliter@...

732-938-7215 (Fax) 888-366-6611 (phone)

LymeDiseaseAssociation.org

*For Immediate Release:*

Contact: Vicky Jaffe, MS & L

(617) 937-2578, Vicky.jaffe@... <mailto:Vicky.jaffe@...>

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 - continuing 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.