ABC 13 News Anchor Noreen Turyn has Lyme Disease. She takes us through her journey and the long road for others in The Lyme Controversy.
It's a disease that's so distressing and often misunderstood, thousands are willing to travel great distances for help.
Even right here at home, people are driving hours, even flying to get diagnosed, and then treated for Lyme Disease, but that's usually that's after spending years searching for answers.
Many are finding answers in what are being called "Lyme Literate Medical Doctors" or LLMDs.
Noreen Turyn, who has a Lyme Disease, says her sister kept her from traveling too far down that long road to discovery.
Noreen's story begins with her sister Laury.
"It was in the summer of 1967 or early fall, and I was nine years old," Laureen "Laury" Peck said.
They lived on Long Island, the region of the country where the sisters later learned Lyme Disease first surfaced.
A mysterious bulls eye rash appeared on Laureen's back.
"About the time it faded away, I started getting really bad joint pains in my knees and they would travel, here a day or two and then the other knee, then neck was stiff, groin."
Noreen and Laureen's father Vic said, "You couldn't touch her she was in extreme pain, I'd have to pick her up to take her to the bathroom, and she'd just scream, that's how painful it was."
But at the time, no one had even heard of Lyme Disease so doctors didn't know what to do.
"Crutches one time, the cast another time, I remember being in a wheelchair for a week at one point... and then, the pain started to fade away and I seemed to be fine," Laureen said.
Flash forward 35 years and the pains returned, along with numbness, migraines, and tingling.
A neurologist diagnosed her with Multiple Sclerosis, but the medicine made her worse.
"It was horrible, and the doctor said well it can't be from the medicine, which it was Copaxone at the time, because it doesn't cause that. It's just your MS getting worse," Laureen said.
That's when Laury did her own research and learned the symptoms for Lyme can be similar.
"I sent this info to my doctor and he said you've got to stop looking at this internet stuff, you've gotta stop that."
But Laury didn't stop. She flew to New York to see a Lyme Literate Medical Doctor.
Turns out she was right and because her Lyme was neurological, the doctor prescribed 12 weeks of IV antibiotics. Laureen regained her health, but kept the sickness to herself.
Then about five years ago, Noreen started getting pain in her right hip muscles. It was intermittent, mainly annoying.
She said she often felt rundown and noticed a frequent low grade fever, but brushed it off. Within a few years, her right shoulder joined in. The pain became more frequent, steady.
She thought it was her mattress, so she bought a new bed. She thought her pocketbook must be too heavy or the way she sat at her desk or that she was just getting older.
In the last year and a half, the fever has been daily and the pain steadily increasing, more constant.
"Actually I'm having extreme high pain today and yesterday," Noreen said.
She described the pain as when "you hit your thumb with a hammer- imagine that lingering pain spread out in your body, and never, ever going away.
Massage was only providing immediate relief. She finally went to her doctor. She took numerous blood tests including Lyme, which tested negative. The doctor didn't know what was wrong and neither did the rheumatologist.
When Noreen finally did tell her sister of her symptoms, it set off an alarm.
"Constant pain, Hello! Tired all the time? Hello! Check it out, maybe they'll rule it out, but check it out!!!" was Laury's reaction.
She was insistent that Noreen see an LLMD. There were only four in Virginia.
In June, Noreen made the four hour drive to one in Chesapeake. Dr. Sabra Bellovin spent more than two hours on their first visit.
She looked at past tests and took a thorough list of symptoms and history.
Noreen says she hadn't realized that the constant sleep disruption, night sweats and fatigue were all clues as well. And lower vitamin levels.
"You were diagnosed with Scurvy, which is low vitamin C and I see that in a lot of patients with spirochetal illnesses," Dr. Sabra Bellovin said.
Despite negative test results, Dr. Bellovin diagnosed Noreen with Lyme Disease.
At that point, Noreen hadn't told her about a tick bite she had gotten about the time her symptoms started. She had forgotten about it, until she found it on some of her records.
Now Noreen is on a number of prescriptions- antibiotics for Lyme, several others for possible co-infections. And lots of vitamins.
Laury has had some residual hearing loss. Noreen says she still hurts and tires very easily, but thinks she's seeing some improvements.
This story first aired November 7, 2007.