Nashua Mom in the 'Lyme Light' on Katie Couric Show

Today at 3 p.m. Kelly Downing will tell her harrowing story of sudden paralysis and miraculous recovery to Katie Couric on national TV. It's a show featuring a segment about chronic Lyme disease. Producers of the "Katie" show found Downing after viewing a nine-minute YouTube video about her rehabilitation at Kindred Greenbriar in Nashua [uploaded below.]

And while it is truly an amazing story, Downing does not want to be defined by the battle her body has been waging against the tick-borne disease which has been threatening her health, it turns out, in one way or another for the past 15 years. 

Although she's currently winning, she knows her body is still at war with Lyme, a disease that doesn't fight fair.

She also knows that for every other person out there dealing with the disease, this moment in the televised "Lyme light" is a chance to give voice to those who have been down some of the same dark roads leading to the same dark places as she has been.

For Downing – and others suffering from baffling symptoms of the disease – the greatest hurdle remains the controversy within the mainstream medical community, which refuses to acknowledge the disease as a chronic debilitating ailment.

That's a fact Downing find difficult to understand, given that pet dogs are routinely vaccinated against and screened for Lyme disease by veterinarians who recognize that in canines Lyme disease can cause joint problems, lameness, organ disfunction and neurological disorders.

The short version of Downing's story begins in January of 2012, during  circle time in her classroom at Broad Street Elementary. As she read a story to her preschool students, Downing became aware that her right arm was swelling and tingling. Then it went numb. Hours later, her other arm was also numb and lifeless.

"I had just been home sick with the oddest flu bug," Downing said. "My joints were sore and I had a strange honeycomb rash all over my body. I had just returned to school, and so at first, my doctor thought I was just suffering from a potassium deficiency."

But a few days – and several helpings of bananas and Gatorade later – Downing's symptoms returned with a vengeance. She went to the Southern New Hampshire Medical Center ER, and from there, was MedFlighted to a Boston hospital, where she nearly died.

However her experience in Boston was medically and emotionally disheartening. She was discharged with no diagnosis, no plan, and a recommendation for a psychological evaluation.

"They agreed that I had no movement in my arms, and extreme weakness in lower half. They did spinal a tap, CTs, MRIs, took countless vials of blood, nerve conduction tests, and could not find anything wrong with me," Downing said. 

"I spent the next three months trying to find a doctor," Downing said. And by her 37th birthday on May 6, 2012, she was certain she was in a permanent decline.

"I felt more like I was 87," Downing said. "And that's when everything started to change. A friend said to me, 'Kelly, you need to see a Lyme literate doctor,' and that's what I did. This doctor did the appropriate blood work which showed my levels were that of someone with chronic Lyme, along with co-infections in my body."

That was a turning point, Downing said.

"When I got the news, it was the biggest relief to me to have the diagnosis. Not only that, but this doctor cared to look at my past history of symptoms, and she determined that I'd been living with this for at least 15 years," Downing said.

Downing grew up in the Massachusetts Berkshires, where farmland and meadows were her playground. 

"Could I have been bitten all the way back to my childhood? Who knows? But ever since college, I've had a series of odd, unrelated physical problems. I was a dancer and a gymnast for 16 years, and all of a sudden my knee popped out, twice. By the end of college, I was having chronic urinary tract infections, and pelvic inflammation. I'm lucky that I've known my husband since those days – he's seen me through good times and bad times," Downing said.

She and her husband, Josh Downing, a fifth-grade teacher at Bicentennial Middle School, married after college. Three months later she was diagnosed with endometriosis. 

"I started taking Lupron, to keep the endometriosis at bay. Come to find out all these years later, that Lupron is a medication that masks Lyme," Downing said.

They were fortunate to be able to have two children – although she suffered a miscarriage between the birth of her two sons, Ryan, 11 and Tyler, 12. 

In 2006 Downing had a total hysterectomy.

"After that, I describe what happened inside me as my immune system exploding," Downing said. 

She dealt with a variety of unrelated allergy symptoms, dizziness and shakes, at times she'd have trouble swallowing, or she'd develop laryngitis for weeks for no reason.

"Oh, and my bladder hemorrhaged, and I had a crazy sinus infection," said Downing, who theorizes that the untreated Lyme bacteria that had infiltrated her system at some point in her past, has been on a constant attack ever since.

So while getting a diagnosis of chronic Lyme was a relief, the six months that followed were perhaps the scariest.

"My doctor explained that things were going to get worse before they got better," Downing said. And that's exactly what happened, as she began a regimen of oral antibiotics, switching after four weeks to IV antibiotics, which included home care.

"Although my husband has insurance, with chronic Lyme, some of the things are covered – those that fall under the CDC guidelines – but all the IV antibiotics supplements and probitotics and vitamins to go along with the antibiotics, none of that is covered. It's all been out of pocket. This is what all chronic lyme patients go through," said Downing.

She continued with antibiotics and exercising at home to build her strength. Then, on December 23, 2012, Downing woke up with stabbing pain along her spine and in the base of her brain.

"My ears were ringing and there was a sizzling sound in my ears. The rest of my body didn't move. I was paralyzed from the neck down. That's really where the story starts, that I talked about with Katie Couric," Downing said.

After being rushed to Southern New Hampshire Medical Center again, where her condition stumped the specialists, again, arrangements were made to send Downing to Kindred Greenbriar Terrace, for rehabilitation. There she met occupational therapist Stacey Irek, physical therapists Steve Desaulniers and Julie Grant, speech therapist, Laura Beard. 

"All I can describe it as is a beautiful, rhythmic dance. They saved my physical body – they worked nonstop, head to toe, with selfless determination, until I was able to walk again," Downing said.

For now, Downing is unable to return to the classroom – she has lingering neurological deficits, and her vision is impaired to the point where she can't drive. Some days are better than others, although she says her spirit is stronger than ever. 

"Even though we've lost an income, I've been so sick off and on for the past 15 years that Josh and I have always tried to live within our means, because my body's been so unpredictable," Downing said.

"Downsizing and simplifying our life has helped. And while it's not easy, I have to go back to my faith – I trust that God's got our finances and my Lyme voyage. That's what's getting us through," Downing said.  

She has also benefitted from a strong community of supporters, who call themselves Kellys Heroes, a group of friends who continue to provide practical and financial assistance through various fundraisers and random acts of kindness.

Downing continues to be upbeat, despite some recent setbacks – exhaustion, vertigo, muscle fluttering, spine aches, muscle weakness in her neck. She has had two seizures triggered by sensory overload – once while in church – and the weakness in her arms and legs still comes and goes. 

"The CDC can claim chronic Lyme is unproven, but people all over the country are suffering. This is one of – if not the largest – epidemic of vector-borne infectious disease. So many millions suffer with it; so many people out there have it and are either misdiagnosed or manageing ailments but not knowing it's Lyme," Downing said.

"My goal is to go into remission and get back to the kids I love to teach. But if that's not meant to be, I will always be a warrior in this battle; I will do all that I can to educate others about chronic Lyme, and the importance of prevention and proper diagnosis," Downing said. 

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@katiecouric has invited the public to join a live lunchtime Twitter chat on the topic of Lyme disease Oct. 9 at noon, topic #LymeDisease. You can join in on Twitter @KatieShow.