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Living with Lyme disease

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BURLINGTON, Vt. - A family-farm in Hinesburg represents a dream come true for David Zuckerman and his wife, Rachel Nevitt, but the pair had to hire more help than they anticipated to compensate for Rachel's nightmarish health problems.

"I was sick for more than a decade before I knew what it was," Rachel said.

Rachel still works the fields, but temporary paralysis can strike at any time. When it does, her loved ones have moments to steer her to a comfortable resting place. Frequently, David has to carry her.

"And it's not an actual paralysis, it's a mental gap in my brain... I can think 'walk silly, walk, go move your leg,' and I'm just stuck in a position until David has to carry me away," said Rachel.

"Unfortunately it's become common enough that it doesn't really hit me emotionally anymore," said David.

Along with the waves of incapacitation, Rachel can experience flu-like symptoms, chills, extreme fatigue and joint pain. She can struggle with word retrieval and spatial awareness, but for years, she and her primary care doctor never considered the symptoms might be from Lyme disease.

"I have to say I'm luckier than most Lyme patients in that my doctor believed me. I had a long enough relationship with her, she knew I wasn't a hypochondriac," said Rachel.

Rachel tested negative on the standard test; she didn't remember a tick bite or an associated rash. Her doctor further concluded it couldn't be Lyme because the disease typically runs its course in weeks.

"So first I had to go through the medical gauntlet," said Rachel.

But more tests and a visit to an out-of-state doctor led to a Lyme diagnosis. David says the mystery of her health problem had strained an otherwise strong relationship.

"Really, I would say learning that she had Lyme has actually saved our marriage," said David.

"So of course you get the diagnosis and you think great, finally, now I can get better," said Rachel.

But Rachel hasn't gotten better, at least not completely, despite taking courses of oral and IV antibiotics. She carries a gene that some research has shown to be correlated with patients experiencing long-term effects from Lyme disease; she also tested positive for two other tick-borne illnesses.

"We're not out there saying everything is clearly defined by Lyme, but we know she has Lyme. The question is does she also have other things," said David.

Many in the medical community don't subscribe to theories that Lyme can linger for several months or years. They say long-term effects are permanent damage from a bygone disease.

A smaller community, who call themselves "Lyme literate" say they see success with long-term antibiotic treatment.

David, who also serves as a state senator, helped pass legislation this year that eliminates possible sanctions for Vermont doctors who consider that approach.

"Somewhere you've got to trust somebody," said David.

Rachel says she's lost faith in the medical establishment and doesn't know if she'll ever be her old self again.

"I was an incredibly energetic person; you'd have to shoot me to get me to sit still, and there are times I can't get out of bed for four days on end... That is not what I would like to be doing," said Rachel.

Reporter Kyle Midura: You've done all this research, what have you determined to be your chances of a full recovery?

Rachel Nevitt: I would like to think I have a chance of a full recovery. I have less of a chance of a full recovery because I was left undiagnosed for so long. It really does get into your brain and it really messes with you. I have seen the future and what my future was a glimpse of was Alzheimer’s, Parkinson’s and a husband who has to wait on me hand and foot including carry me up to the bed, carry me to the potty after I go pee, dress me sometimes and all that's completely unnecessary. Doctors really need to take this seriously.

David says he doesn't see Rachel as a burden and adds that one day, she may have to take care of him.

The couple have an 8-year-old daughter who they say handles her mother's illness well.

"I think that's the hardest part is seeing it, the physical side of what it's doing to her affect her psychologically in terms of her feeling that she's a burden that she's not able to do what she would like to do on the farm and as a mom and as a spouse, I think that's the most difficult part," said David.

The couple says their greatest indignity is being dismissed by much of the medical community at large.

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