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Photo project puts the toll of Lyme disease in focus

Jiatong Lu, who has chronic Lyme started "Nowhere Land" to raise awareness about patients who feel they are stuck

MAINE, Maine — All week we have been showing you the impact of deer ticks and the diseases they carry. 

For patients dealing with Lyme and tickborne diseases, healing can be challenging and painful.

Patients often feel misunderstood or even invisible because they may appear healthy but are suffering from symptoms ravaging the inside of their bodies. 

Jiatong Lu is a professional photographer who is capturing the realities of living with Lyme to focus on the human toll of the disease.

Lu was diagnosed with neurological Lyme disease and co-infections two years ago. After a difficult journey of healing, she is now photographing patients across the country to give them a voice after feeling their suffering was invisible to the rest of the world.  

 Lu said her nightmare with Lyme started in 2021. 

"I never found a tick bite or rash, but all of a sudden I got some symptoms like headaches and fatigue," Lu explained.

She also had a stiff neck, joint pain, and depression and couldn't function normally. Despite a negative test for Lyme, her doctor prescribed the standard treatment, a single dose of doxycycline, to reduce the risk of the disease. She started feeling better, but a few months later, her symptoms returned with a vengeance. Lu, who lives in Hudson Valley, New York, had to put her fine art photography business on hold. 

"I couldn't walk. I couldn't sleep. I had a very bad stiff neck. I couldn't even lie down," Lu said emotionally.

She also suffered from light sensitivity and neurological issues. Her symptoms started improving after she saw a doctor who focuses on treating Lyme disease patients. 

During this time, Lu also found support online from other patients suffering from what the U.S. Centers for Disease Control and Prevention calls "post-treatment-Lyme disease syndrome," also known as chronic Lyme. It's when symptoms of pain, fatigue, or difficulty thinking last for more than six months after they finish treatment. 

She wanted to tackle the stigma of chronic Lyme through her own unique lens. Last year, she launched a photography project called "Nowhere Land" through her website and Instagram. The photo exhibit displays images of Lyme patients who feel they aren't taken seriously by doctors when they test negative and are told their symptoms are "all in their head."

"Some of the people feel they are hiding too long. It's time to speak out," Lu explained. 

Her first subject was her neighbor, who suffers from vision issues from tick-related illness. Lu incorporated her friend's art into the photo.

"She has very bad Lyme vision; those are floaters she sees in her vision," Lu said.

From a frail 26-year woman who needs daily IV treatments to a young college graduate diagnosed in 2020 with Lyme and five other tickborne-related illnesses and still struggling with symptoms. 

There are also photos of doctors' bills, medical notes, and patients' personal stories visualizing the difficult path to healing for patients who feel they don't exist. Lu, who still has her good and bad days, hopes to turn the project into a traveling exhibit and a photo book available to the public.

"I really hope people who have this chronic illness, chronic Lyme disease can be seen, can be heard, can be understood," Lu declared.

Lu has photographed more than two dozen patients from across New England and other parts of the country and would love to include photos of Mainers suffering from chronic Lyme. You can contact Lu through email.

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