Left Virtually Helpless as Disease Ravages Body: One Family's Nightmare of Lyme Disease Misdiagnosis
Updated: Tuesday, June 10 2014, 05:34 PM EDT
Lyme disease, often called "the great imitator," has symptoms which mimic those of other diseases, including fever, fatigue, headaches, joint pain, anxiety, depression, heart and nerve problems. For this reason it often goes misdiagnosed or undiagnosed.
For one family, a misdiagnosis of this disease has changed their lives forever.
Chris Valerio's symptoms started as a slight twitch of the finger. That symptom was overlooked by scores of specialists and today, a formerly active young man who just five years ago was working summers as a landscaper, is totally dependent on others for walking, eating, bathing and other everyday tasks.
Chris, 34, is now virtual helpless, though there's a very good change it could have been prevented.
"We saw 15 different neurologists," Chris's father John Valerio said. "And none of those doctors suggested Lyme disease at all."
Chris likely acquired a tick borne illness while landscaping but neurologists speculated it was an ailment like anxiety or depression that was the root cause of Chris's condition. He continued to worsen, unable to speak, his nervous system ravaged by years of misdiagnosis or no diagnosis.
"One doctor said, 'He's a young guy and he's going to have to learn to live with it,' and I said, 'Absolutely unacceptable,' and, 'I'm not accepting that,' and we didn't," John said.
The Valerios finally tracked down specialist number 17, Dr. Richard Horowitz, author of the bestseller "Why Can't I Get Better?" and a world renowned pioneer in Lyme disease research.
"Unfortunately by the time that he reached me he was already in a wheelchair," Horowitz said. "[He was] unable to stand unable to speak, tremors that were severely affecting his life."
According to Dr. Horowitz, it's not just one disease infecting Chris's system; with one ticket bite, multiple infections can be transferred. Chris has been infected with West Nile Virus, and tested high for mercury and lead, both of which can cause tremors.
Despite these heady days of modern medicine the great majority of medical specialists still look at Lyme disease through a very narrow diagnostic lens. Traditional medical education has always taught doctors to find one underpinning cause for all the patients' symptoms. But if a Lyme patient like Chris Valerio has 35 serious symptoms, all co-infections, eating away at the victim's body, most conventional specialists will try to explain all 35 away with one primary diagnosis, tragically assuring chronically ill patients like Chris to fall through the cracks.
"People think, 'Oh, I always get a bull's-eye rash,' but nothing could be farther from the truth," Dr. Horowitz said. "The only way you get better from Lyme is when you only get Lyme without co-associated infections."
For Chris's mother Beverly, her routine never changes from day to day. Medication and supplements to fight the relentless poison overpowering Chris's body are sorted and labeled, 40 pills and nearly 10-oils and liquids every day. Everything Chris swallows is ingested by a straw.
On the rare occasions that the Valerios can afford it Chris undergoes treatment in an infrared sauna, detoxifying dangerously high levels of mold and heavy metals like lead and mercury that the tick borne illness has rendered Chris's immune system too weak to flush them from the body.
"We'll be treating his heavy metals, his mold, detoxing him and helping him with physical therapy and rehab, to hopefully regain some of the functions that he lost," Dr. Horowitz said.
Chris's nightmarish physical and neurological journey has plagued those who are closest to him, loved-ones who would do anything possible to reclaim all that wasted time.
"A lot of times we'll think, you know, if the third doctor we had seen or the fifth doctor we saw would have suggested being tested for Lyme we wouldn't be here," John said. "Well we're here, we are here."
John added; "I'll say to the doctor, 'Get Chris well again and you'll be giving us back our lives.'"
Meantime, the Valerios have put all their money, all their energy, and above all, their hope, into creating an awareness of the cataclysmic effects of a simple infectious tick bite so that others do not have to endure similar hardships.
"I'd sell a kidney just to get him better," John said. "That's what it's all about; it's all about your kids. Anyone with kids knows that."
Dr. Horowitz says anyone who even has a gut feeling that they may have Lyme should see a specialist immediately, and should seek a second, third, or fourth opinion – until satisfied.
If you'd like to read more about Chris, or if you want to donate for Chris's recovery, CLICK HERE: http://www.gofundme.com/6erhq8