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Lyme Disease Support Network

Lyme Disease and PTLDS Basics


#1

Many of you have come here searching for answers. You made have read things on the internet or heard stories from friends about lyme, Igenex, western blot, ILADS, IDSA, etc. We hope to demystify some of this for you, knowing that it can be quite difficult to sort out the hype from solid, authoritative information. We have no agenda other than to offer information and support to patients who are affected or have been affected with lyme disease. We recognize that some of you are very ill. We cannot offer cures or magic bullets for chronic illnesses associated with lyme disease. Chances are that those of you who were infected with Lyme and experiencing chronic symptoms may have Post-treatment Lyme Disease Syndrome. The symptoms you experience may be alleviated somewhat by treatment, but damage to the immune system that you may have already experienced may not be reversible. Therefore, it is more a question of learning to cope with your "new normal".

To keep this a safe and responsible patient community, we ask that you observe this guideline:

Describe, not Prescribe.

What this means is while that you are welcome to share your own experience with treatments, you are not welcome to suggest a course of action to others. This is a virtual format, and we cannot know enough about a patient’s condition to either diagnose someone (“yes, you have lyme”) or recommend a course of treatment.

Additionally, we are prohibiting the use of the words “lyme literate doctor” on this community. These words have attained a sort of magical potency among internet support groups. However, the term “lyme literate doctor” may not be what it sounds like. In many cases, the “doctor” is not an MD. What is designated as “lyme literate” may turn out to be lyme ignorant and willfully blind to scientific evidence. Abandoning science for unproven, mythical theories of disease has detrimental consequences for patients. Therefore, this community is unapologetically science-based and evidence-based, though we recognize that more research is needed to determine better treatments.