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Living With Chronic Lyme Disease: NJ Woman's Never-Ending Nightmare

It took four years for doctors to figure out what was wrong with Jasmin Perdomo. And still, that didn't solve her problem.

Jasmin Perdomo

Jasmin Perdomo

Photo Credit: Jasmin Perdomo

Perdomo was 27 and living in Puerto Rico when symptoms presented as headaches, body aches and extremely swollen joints in 2014.

All tests were coming back normal as the Elizabeth native was getting worse.

Symptoms progressed to vertigo, heart problems, and a laundry list of cognitive issues like memory loss, inability to balance, slow speech, and facial paralysis.

Sometimes, Perdomo would get in her car to go somewhere, only to find herself on the roads and completely forget where she was going.

In 2018, Perdomo got her diagnosis: Lyme disease, a tick-borne illness caused by bacteria typically treated with antibiotics.

The relief of a diagnosis came and went for Perdomo, who had been misdiagnosed multiple times as the disease wreaked havoc on her body. Doctors put her on antibiotics, and she's been on them ever since. They work for about six months before symptoms of Lyme creep up again.

Sidelined from her job because of her inability to function, Perdomo moved back home with her mom in Vernon last year and is focused on finding a treatment plan that works.

"I would call this a fight for my life," Perdomo said. "I’m willing to try whatever, but it’s hard when you don’t have the funds."

Perdomo's fiance, Jonathan Pietri, launched a GoFundMe that had raised more than $6,000 as of Tuesday, Nov. 1. It's something, but it's not enough.

Perdomo has completely depleted her savings in paying for doctors visits, which can cost upward of $2,000 for a consultation alone, she tells Daily Voice. The financial strain and physical symptoms are exhausting for Perdomo, who has started researching her own treatment plans.

"You get to a point you don't believe what the doctors tell you," she said. "It wasn't making sense that I was on this cycle. What they were doing obviously wasn't working."

She became obsessed with reading other people's stories, learning what they've done that's worked — desperate for a glimmer of hope.

She recently tried Supportive Oligonucleotide Technique (SOT), a  breakthrough therapy that utilizes short DNA or RNA to help stop the organism that causes the disease from replicating, according to the Infusion Clinic of Ocala.

It's too soon for Perdomo to say if it's been working, she said. But she isn't ready to give up yet.

"I have moments when I feel completely hopeless," she said, "but then I remember who I was before Lyme came into my world. I was full of life. I want that again. I have no choice but to keep pushing through and to continue being resilient."

Her message to others?

"Never, ever give up on yourself. Allow yourself to breakdown, but don’t stay stuck there. Pick yourself back up no matter how many times that takes."

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