I don’t have the words to describe the disgust and sadness I feel when people are turned away by doctors or Lyme tests (than come back false negative) saying, “no, you don’t have Lyme.” The longer one waits to treat Lyme, the more symptoms, bigger the problems. I’ve often second guessed myself and my family’s treatment of Lyme. Are we doing the right thing? Do I really have Lyme disease if I don’t feel any symptoms? I would love to believe the Infectious Disease Society of America (IDSA) who claim Chronic Lyme doesn’t exist. We could save a whole lot of money, hassle and unsupportive doctors visits.
However,if we turned our backs on getting treated for Lyme and pretended it didn’t exist, we would only be hurting ourselves. Yes, there is a great debate, but any educated person would know the truth of it. Chronic Lyme exists! Unknowingly, I had/have it and passed it to innocent Jackson. I know there have to be thousands upon thousands of stories like mine, but the difference is, they don’t know it yet…and possibly never will. Their kids are ‘autistic,’ have ADHD or are developmentally delayed and probably will be for the rest of their lives since their doctor and Lyme test say, “no, they don’t have Lyme.”
I seriously wonder if I will see the debate settle in my lifetime. Saddened and disgusted. Lyme is the most confusing disease out there. No reliable tests, uneducated doctors, parents misguided. Awful.
Looming over a heart-wrenching image of a hospitalized woman is the grim message that “chronic Lyme disease” is as disabling as congestive heart failure. The online ad aims to spread awareness of the tick-transmitted disease creeping through the state. But health experts say chronic Lyme disease doesn’t exist and worry that what’s really lurking is misinformation.
May is Lyme Disease Awareness Month, which coincides with the debut of young (nymph-stage) ticks that help transmit the disease. Vocal patient-advocacy groups, such as the California-based LymeDisease.org, which posted the online ad, say the disease is everywhere, difficult to treat and causes debilitating “chronic Lyme.”
But the Infectious Diseases Society of America, backed by the Centers for Disease Control and Prevention, disagrees and is pushing back against what it considers part of a wave of anti-science health movements.
The dispute is heated. It’s not just whether chronic Lyme exists that has the two sides at war.