“PTLDS” is a despised acronym in the Lyme community. Officially, it stands for “post-treatment Lyme disease syndrome.” For many patients, them’s fightin’ words.
The term implies that someone was adequately treated for Lyme disease and that any remaining symptoms must be caused by something else. (All in their head, perhaps?)
It’s a way of marginalizing patients, dismissing their concerns and denying further treatment.
Now, Erin Strieter, 32, who has suffered for two decades with late-stage neuro Lyme and related ills, has composed a spoken word poem about PTLDS. I urge you to take a look.
Erin lives in Maryland. She shares this and other Lyme-related thoughts on her Instagram page: @lyme_lyte
For more about why LymeDisease.org thinks the term PTLDS harms patients: Abandon “Post-Treatment Lyme Disease Syndrome” label.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
Dorothy Leland
Dorothy Leland is a longtime advocate and researcher focused on Lyme disease education, policy awareness, and patient support. She has contributed to numerous publications and works closely with medical professionals and organizations to improve understanding and treatment of tick-borne diseases.
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