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Her Worst Enemy
Posted on October 19 2013
Three years and countless doctors later we have finally put an end to Quiana’s medical mystery as we now know she has Lyme disease and PANDAS. Every day she experiences unbearable pain and physical symptoms that have completely halted her young life as she once knew it. Quiana’s daily life now consists of contending with devastating symptoms associated with the disease: severe, sharp, stabbing pains in her head; dizziness; heart palpitations; numbness in her extremities; seizures; fainting spells; air hunger; auditory and visual hallucinations; moments of blindness; ringing in her ears; painful knots on her head that move around; hair loss; fatigue; nausea; lack of tolerance to high temperatures; severe joint pain; and short-term memory loss.
This disease has robbed our daughter of her life and her ability to engage in normal teenage activities like learning how to drive, attending school on a regular basis and just having any sense of normalcy. Despite this, every day Quiana wakes up with a smile on her face. She pushes through the pain in order to spend a few hours trying to be like other kids her age going to school. She does all this only to come home and collapse from exhaustion, often unable to get out of bed the rest of the day.
What hurts our family more than watching Quiana endure the unbearable pain every day is the uncertainty around knowing I may lose her at any moment. Worse still is that her situation is exacerbated—it’s made more complicated and more difficult to manage in every way—as a result of the CDC’s guidelines for treating Lyme disease. Likewise, there is a lack of support for physicians willing to treat this controversial disease. This lack of support and the strict CDC guidelines combined with the very few doctors who even treat Lyme disease mean most doctors do not even accept insurance, leaving Lyme sufferers as well as their families financially desperate, clinging to little hope they will ever rid their loved ones’ bodies of this debilitating and sometimes deadly disease. In the end, Lyme disease sufferers, like Quiana, are left in despair, uncertain as to whether or not they’ll ever regain control of their body, mind, and life.
PANDAS adds insult to injury, as PANDAS causes Quianas antibodies to attack parts of her brain anytime she gets an infection. Therefore, stacking the odds against her of being able to put her Lyme disease into remission.