It was a January day that hit the Slatner family hard and swift. After more than a year of watching his body fall apart, Matt and his wife Stephanie, of Henrico, were facing a long and painful death.
“They came and sat us down and said, ‘you have ALS. It’s definitive,'” Matt Slatner remembered.
The Slatners remember the line of doctors marching in and out of the room, explaining how Matt’s life would fade away and how he would eventually need assistance even to breathe.
“It was the welcome to the place that will help you die,” said Matt.
“All I could think about in my head every time I thought about it- was my oldest child, Caroline, who is so close to him,” Stephanie described, a tear streaming down her cheek. “Getting married and not having him there. I can’t even think about it.”
Sitting in that chair, hearing those words, it was a diagnosis Matt Slatner couldn’t accept. Matt said he wasn’t in denial. He was just so sure doctors were wrong about him. His problems started after an August hike in 2013 and several tick bites.
He couldn’t shake the idea that the reason for all of his suffering was Lyme Disease, something that was curable, but possibly deadly if left untreated.
Before they got here, life inside the Slatner home has always been busy – three kids, two entrepreneurs, and an active life until that hike in the summer of 2013. The problems all came after that.
“My right hand was bothering me,” remembered Slatner, his speech slow, and difficult. “And I said, ‘Man, I’m feeling horrible. Real tired. I can’t wake up.'”
Matt said he also had a rash, so he went to the doctor and mentioned the ticks, but said he was diagnosed with allergies and eczema. In the months that followed, he had headaches, lethargy and sinus pain. He also had to experience test after test after test. He had back and shoulder pain. He couldn’t lift his arm. After that, there were more tests, more doctors, more hospitals. Several of them.
“The whole time, everywhere we went, brought the ticks up,” said Matt, talking about multiple visits to multiple doctors and multiple hospitals. “Everyone said no. They won’t cause symptoms that manifest in this way.”
Months passed and the family still didn’t have answers about how to make Matt better.
He also had blood pressure problems, which were diagnosed as a panic attack. Then doctors thought, maybe he had a stroke. There were neurological scares, too.
There were more trips to the hospital, more tests, and more drugs but still no answers.
The healthy entrepreneur and avid hiker now needed help doing the most basic tasks. Even breathing was a chore.
“I was having trouble walking,” said Matt.
And then the biggest blow of all, an ALS diagnosis.
“I said, ‘yeah, but what about those ticks?'” Matt remembered. “He said, ‘enough’s enough. The reality is, you have ALS, and you know, you really need to embrace what I am telling you.'”
Matt’s family was told to help him come to terms with his death.
But inside their home, the Slatner family was doing its own research on Lyme symptoms, and everything kept pointing to those tick bites.
“Every single thing is Lyme symptoms,” Stephanie said, remembering the long days and nights of research, three busy kids, and a husband, slowly fading away. “No one would listen. I mean, they made us both feel like we were crazy.”
Then finally, an odd blessing. Matt’s whole family came down with strep.
Concerned, Matt went to an urgent care facility to get checked out. Any infection could be crippling given his health state. “She said, ‘Have you ever been bitten by a tick?'” said Matt.
Several days of penicillin later, Matt said he instantly felt better. Once again, it had the family wondering whether anyone would believe that he could actually be sick from Lyme Disease, which is often treated with antibiotics.
“That Friday, I called the ALS doctor. ‘Hey, guess what? I feel great!'”
Matt said he was reluctantly tested for Lyme, and this time there were undeniable signs — he had Lyme Disease.
After nearly two years of begging for antibiotics and Lyme Disease testing, Matt said he finally started rounds of antibiotics with a Lyme literate doctor.
He has to drive to Washington, D.C. for treatments, but doctors are hopeful he can fully recover.
The treatment requires intensive IV therapies that costs tens of thousands of dollars, not to mention home health support and therapy. Right now, the Slatners are hopeful Matt will be better within the year, but it could take longer.
However, they feel like their fight is not over. They say had he been treated for those tick bites from the start, with a standard round of antibiotics, his life wouldn’t have been on the line. He wouldn’t have lost years of his life, and they certainly would have saved more money. Matt has many months ahead, if not years of recovery.
Slatner’s story is not over, and he promised to let us watch his journey because they want his story to teach others about Lyme Disease.
They also plan to pursue legal action, in hopes it will prevent another Lyme Disease misdiagnosis.