Robin Fiorese is a champion for her husband, Tony, who was finally diagnosed with Lyme disease after a misdiagnosis of ALS. In this installment of The Lyme Interview, she shares his story with the goal of spreading awareness of Lyme Disease and the many ways it imitates other illnesses. This is a family that will inspire you to never give up, traveling all the way form British Columbia to Florida for treatment. They went from hopelessness to hope. This is a picture of Tony taking a break from treatment to visit Epcot.
Tell us a little about who you are and what you do:
I'm in my late 40's, I don't have human children, but I have dogs. I have been involved in a volunteer parrot rescue for the last 16 years, and have a few adopted birds. I enjoy being outside and we have recently moved from our 2.5 acres in the City of Surrey to a property 3 hours away in the city of Peachland in the sunny Okanagan, British Columbia, with a lake view. Needing to downsize to pay for treatment and for a drier climate. Tony is a 50 year old craftsman of all trades, working in the movie industry building sets, as well as, a volunteer Fireman and presently a Paramedic, he is also an outdoorsman into hunting, fishing and outdoor sports.
Your husband was diagnosed with Lyme after a misdiagnosis of ALS. Please share your story:
Tony was in the best shape of his life and working out 6 days a week, but while at work, one of his patients adjusted herself on the cot as she was being carried out of her residence, and Tony, along with his partner, went to stop her from falling and he ripped his right rotator cuff. He started physical therapy and was only getting weaker, losing all his muscle mass on the entire right side of his body, including his leg.
He was then sent to a neurologist, and then a second neurologist, and they both said Tony had ALS, which as they said is "a death sentence." They said they had a drug they wanted Tony to take, but he refused and started to do his own research. He found that ALS and Lyme mirror each other very closely. Tony being a hunter thought it was quite possible he was bitten by a tick. We don't know when, it could've been 20 years ago. It was not until he had the trauma to his body (ripped rotator cuff) that it started to show its ugly face.
Then we found a Lyme Literate Natropathic Doctor about an hour from where we lived. Tony's blood was sent off to the United States for testing. He had enough markers to diagnose Lyme disease, so the year-long treatment started. Things were getting worse but we held onto hope that at some point he would turn the corner. Once all the so-called natural remedies we tried didn't work the doctor wanted to use heavy, high doses of IV antibiotics. We left and started treatment with a Chinese Medicine clinic only 5 minutes from our home for 8-9 months, again we were holding onto hope...
What was your family's lowest point and how did you find your way out of it?
After realizing the Chinese remedies were also not working and feeling we were at a dead end was probably the lowest point. More research on the internet brought Tony to the current treatment in Florida where he has been for the last 5 months.
What is the one thing your husband has found most helpful in treatment?
Finding a doctor that knows what he is talking about and knows the proper treatment for each individual case of Lyme.
What do you want people to know about Lyme disease?
It can can happen to anyone. Who hasn't been bit by a mosquito? Or flea, which are also carriers.
If you could take away one symptom, which symptom would you take away and why?
The deterioration of the myelin sheaths on the nerves. This has taken away Tony's ability to walk and do things with his arms and fingers. He had bad breathing issues as well, but that has been Improving.
Finish the following statement "I wish…":
There was funding available and the government would recognize that Lyme is an epidemic and needs to be addressed.
Please share a mantra or quote that inspires
Everything happens for a reason.
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.