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.
Lyme Disease is hard to diagnose, and many patients have spent years searching for answers.
Yet within the medical community, there's a battle raging over how to treat Lyme Disease The main players at battle in The Lyme Controversy are the International Lyme and Associated Diseases Society (ILADS) and The Infectious Diseases Society of America (IDSA).
One doctor says uncovering this war is more important than the whole Watergate scandal, because it is dealing with people's lives. Dr Norton Fishman is a member of ILADS.
He says Lyme Disease is being politicized, while thousands, maybe millions are suffering.
"We have something going on that needs to be addressed and is being fought, not only ignored, which would be bad enough, but being fought," he said.
Let's start with testing. No one disputes the tests for Lyme Disease are unreliable, but there are two labs ILADS members feel are more accurate.
"We use a special lab in California that is giving us better results. They're picking up 4/5 of what we think are the cases as opposed to 1/3 so it's much better," Dr. Fishman said.
The lab is IGeneX. It is more accurate, yet many insurance companies won't cover it because it's not in their network.
Noreen Turyn paid $715 out of pocket, but she chose to take it. Her doctor already had made her diagnosis. The results were positive, as they were for her sister Laury.
It is a certified lab, but Dr. Fishman says some Infectious Diseases doctors don't give it merit.
"They dismiss and say the lab's no good, because it's giving us a test we don't believe in," he said.
Meaning it could prove that there is something called Chronic Lyme Disease, which IDSA says doesn't exist. Their treatment guidelines say 2-4 weeks of antibiotics will cure you.
And if the symptoms come back down the road, they call it Post Lyme Syndrome.
Infectious Diseases Specialist Dr. Robert Brennan said, "We think it's more the immunologic response which is a non infectious process where they do need treatment- with anti-inflammatories, with whatever medicine you can use to decrease the inflammation."
ILADS adamantly disagrees.
"That's like telling someone they have post Alzheimers," Dr. Fishman said.
If your symptoms come back, they say you're not cured- it's Chronic Lyme.
ILADS guidelines say you may need months, even years of antibiotics to wipe it out. Dr. Fishman says the proof is in the 2/3 of his patients who've gotten better, which is the same case with Noreen doctor, Dr. Sabra Bellovin.
"I believe the other organization is more concerned about antibiotics resistance, and I'm concerned with the individual patient," Dr. Bellovin said.
And that makes for a fierce battle over treatment. Some doctors are being hauled before their medical boards for over-prescribing, especially for the risky IV antibiotics.
"They're expensive, they have side effects, there are other risks and there's no data to show that it does any good," Dr. Brennan said.
Dr. Brennan says 20 years of scientific studies back up their standards, but ILADS says their research is being ignored.
In fact, Connecticut's Attorney General has launched an investigation to see if the IDSA panel who wrote the guidelines did ignore it.
One of his concerns is something that's already happening: meds not getting covered long enough. Michele Spruce is still paying off about a $10,000 debt.
Noreen's sister Laury Peck had to borrow $8,000 from her parents to cover the rest of her IV antibiotics beyond the four week standard.
"I went before the insurance board begged them, with my doctor begged them to pay, and they refused," Laureen said.
Thanks to her parents help she is cured. But what about the thousands maybe millions, caught up in this medical melee?
"We're missing the opportunity to help people get better. I'm seeing we can do something for most of them. Not all of them, but most of them. And I don't want to be the only one. I'm not Don Quixote," Dr. Fishman said.
Dr. Brennan says he's seen a large number of patients who have gotten better without long-term antibiotics. Another problem with this disease is that it's grossly under-reported. The CDC admits there are at least 10 times as many cases out there, but they only count those with the bullseye rash.
This story first aired November 8, 2007.