Chronic Lyme Petition

[Guest guest]

The political battle over the right of patients to seek adequate

treatment for the debilitating symptoms of Chronic Lyme Disease has

reached a boiling point. I am writing to let you know that a

petition protesting the new Lyme Disease Diagnostic and Treatment

Guidelines published by the Infectious Disease Society of America

(IDSA). The new guidelines are even more restrictive than the

diagnostic and treatment guidelines currently utilized by the

Centers for Disease Control. Specifically, these new guidelines seek

to eliminate the diagnosis and treatment of Chronic Lyme Disease, a

disease that I have battled for many years. They argue for complete

reliance on inherently unreliable diagnostic criteria and

specifically exclude the use of specific medications and treatment

regimens that have been empirically demonstrated to be helpful to

patients with Chronic Lyme Disease. Some of the medications that the

IDSA seeks to exclude have been very helpful to me. My own Lyme

Physician stated to me that, if successfully implemented, the IDSA

guidelines may force her to stop treating Lyme patients. These

guidelines seek to remove clinical discretion from the treating

physician and replace it with diagnostic and treatment mandates that

allow the disease process to progress unchecked with only palliative

measures allowed.

The petition is only a first step, but is a critical one.

According to my Lyme Doctor, 80,000 signatures are needed. As of the

writing of this e-mail, approximately 8,000 signatures have been

obtained. The International Lyme and Associated Diseases Society

(ILADS)is also raising money to fight the implementation of these

new standards on the legal front. But it is not a fair fight. The

800 person membership of ILADS is taking on the 8,000 person

membership of IDSA. This political battle has become a life or death

matter for me. Without ongoing treatment, I anticipate that the

gains I have made will be lost and I have no doubt I will face a

steady downhill decline into permanent disability. During a

discussion with my Lyme Doctor, it became clear that there must be a

grass roots movement on the part of Lyme patients, their families,

and friends to resist the attempts by the IDSA to deny effective

treatment to sick patients all in the pursuit of a political agenda:

to obliterate Chronic Lyme Disease and its treatment.

For those of you interested, the petition can be located at

www.lymediseaseassociation.org.