By Stephanie Stahl
PHILADELPHIA (CBS) — A life gone haywire because of what the family says was a missed medical diagnosis. The Delaware County family wants to warn others as they fight to save their son. Doctors say it could happen to anyone. Health Reporter Stephanie Stahl has more on a grown man who has to be cared for like a baby.READ MORE: Police: 16-Year-Old Boy Shot Twice In Abdomen In West Philadelphia
Thirty-four-year-old Chris Valerio is a prisoner in his own body. Just standing up is an ordeal. He can’t feed himself or talk much, but his parents say his mind is fine, he understands everything.
“It’s very frustrating. Obviously it’s very disheartening. We’ve had our days of tears,” said John Valerio, Chris’ father.
For his parents, it’s heartbreaking to see Chris, who’d been such a free spirit. He loved to travel and try new restaurants. Now he can’t chew, or do anything for himself.
“It’s very difficult. It’s like you know every day we look for a little pinch of hope,” said Bev Valerio, Chris’ mother.
It’s a demanding job, taking care of Chris. That’s why John is working part time, overnights as an anchor at KYW Newsradio. He says five years ago, his family was living a normal life. Chris was healthy and working in landscaping. Then one day his finger started twitching.
“A couple months later it progressed to his hand shaking, and at that point I knew we had to start seeing doctors,” said John. He and his wife say they took their son to all kinds of specialists, but no one could explain what was happening.
“Doctor after doctor would say all his tests are fine. One doc even said he’s a young guy he’s just going to have to learn to live with it,” said John.
His family claims he was misdiagnosed several times, first with anxiety, then multiple sclerosis and Parkinson’s. A test for Lyme disease was negative, but then Chris developed several co-infections associated with Lyme, like Rocky Mountain spotted fever. Finally, after three years of searching a specialized blood test confirmed Lyme, caused by a tick bite.
“This is a real public health threat,” said Dr. Richard Horowitz, Chris’ doctor and a renowned Lyme expert in Hyde Park, New York. He wrote a book called “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. “
“We have to realize that this has spread. It’s imitating all of these different diseases. And people really need to understand the signs and symptoms and the unreliability of the blood test,” said Dr. Horowitz.
If caught early Lyme can usually be cured with antibiotics. But Chris is among a growing number of Dr. Horowitzs’ patients who were diagnosed late and developed chronic Lyme with serious complications. So alternative treatments are being tried, among them an infrared sauna.
“We get the vast majority of our patients better, but it’s not something yet that has been I would say widely adopted by the medical community,” said Dr. Horowitz. He thinks patients with chronic Lyme disease can’t filter toxins properly. So he also uses a variety of detox supplements in addition to antibiotics and antivirals to treat co-infections.
“He can’t swallow pills, so we crush them up,” said Bev.
Chris gets about 60 medications and supplements a day. They’re expensive and not completely covered by insurance, among many issues the family is confronting.READ MORE: Philadelphia Helping Kids Beat Heat By Opening 56 Spraygrounds Early
“At first we were just devastated by it, but that devastation has been replaced by a determination of fight,” said John.
Some doctors say Lyme disease has become an epidemic in our area, and it’s especially during the summer months. You’re at highest risk in areas where deer are prevalent.
Sometimes there is a bulls eye type rash, but not always. Other symptoms are flu-like. Chris’ case is rare. Most patients recover, but early diagnosis and treatment is critical.
There are tens of thousands of people who suffer with symptoms of chronic Lyme, which includes things like joint pain and fatigue.
WATCH: WEB EXTRA: Father Talks More About His Son’s Condition
John Valerio, Chris’ father, talks more about his son’s condition.
WATCH: WEB EXTRA: Doctor Talks More About Lyme Disease
Dr. Richard Horowitz, Chris’ doctor, talks more about Lyme disease.
Chris Valerio’s GoFundMe Information- http://www.gofundme.com/ChrisBattle
CDC Lyme Disease Information- http://www.cdc.gov/lyme/faq/index.html
Lyme Disease Association- http://lymedisease.org/
Dr. Richard Horowitz Information- http://www.cangetbetter.com/
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