Lyme Disease Awareness Month: Author Amy Tan says severity of symptoms left her unable to think or write

How a tiny tick changed her life forever. Amy Tan knows she can now manage her symptoms, but she doesn’t expect to ever be cured

                            Lyme Disease Awareness Month: Author Amy Tan says severity of symptoms left her unable to think or write
Amy Tan (Getty Images)

Lyme disease affects thousands and is spread from the unnoticeable bite from a tick. For a few years now, celebrities that have to suffer the debilitating symptoms of the disease have gone public about their diagnosis bringing in the awareness that has been much needed. Celebrities such as Yolanda Hadid, Kelly Osburne, Shania Twain and Justin Bieber have all suffered the symptoms of the illness that is usually invisible. Amy Tan, a novelist, is one among those who went undiagnosed for years and has been vocal about her experience.

Tan, the author of 'The Joy Luck Club' and 'Valley Of Amazement,' is the co-founder of LymeAid 4 Kids, which pays for the diagnosis and treatment of children who have Lyme disease and are uninsured. On August 11, 2013, Tan revealed in a New York Times article titled 'My Plight With Lyme Disease', "I didn't know the speck on my shin was a tick. I saw no bull's eye rash. I had a brief bout of the 'summertime flu.' Then, over the next four years, I was plagued by a variety of ailments." The author said she suffered from " joint pain, head, and muscle aches, insomnia, a racing heart, a gagging sensitivity to smells, constant nausea and exhaustion, plunging blood sugar, and seizures," revealing the array of symptoms Lyme presents with resulting in it often been misdiagnosed or going undiagnosed. 

Being a celebrated author, Tan's writing was her career, her life. There was a time she was unable to read a paragraph, "unable to tie two thoughts together, nevermind the plot of a novel," she said. She had revealed that even though she was seeing excellent doctors, she wasn't tested for Lyme even after suggesting it. After enduring more than four years with erratic symptoms, Tan said, "In 2003, I finally found a doctor familiar with the disease. Three months after antibiotic treatment, I could write again." Tan had also revealed to the Washington Post on August 5, 2003, that she had an array of symptoms even after several months of antibiotic treatment, including fatigue, memory loss to tinnitus (ringing in the ears) and olfactory hallucinations.

Lyme disease is spread by ticks and if not treated, can present deliberating symptoms that can affect the heart and the neurological system, among many others. Revealing that she wasn't cured and that symptoms would come back should she stop her antibiotics, Tan said she had "permanent body damage, including epilepsy, a consequence of 16 lesions in my brain." These damages at a time can be prevented if doctors consider the illness as a possible diagnosis, but while it is painful to endure, most victims are affected for a while before they are presented with the right diagnosis. "Ten years have passed since I was diagnosed, yet little has changed in the way medical schools, H.M.O.’s, private practitioners and insurance companies view the disease. It is still frequently misdiagnosed and patients with chronic suffering remain overlooked," said Tan.

Tan ended her NYT article with an emotional plea of sorts, "We need to revise the guidelines based on new research and the plight of those who have suffered from the disease, some of whom have lost their jobs, their homes, their marriages, and even their lives. I await the day when there is a new standard for diagnosis, treatment, and insurance coverage. Only then will I be able to confidently say to those desperate people who reach out to me: 'Don't worry. You'll soon be well again'," she said.

May is National Lyme Disease Awareness Month, and it brings an opportunity for Lyme patients, activists, and educators to share tips and open up about Lyme and tick-borne diseases. In this column, we highlight the struggles of celebrities and talk about preventive and cure measures.

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