Sarah Gallander uses an infrared sauna to help with her pain from Lyme disease. She went to eight doctors for help with her symptoms.
"Fevers, chills, night sweats. I mean, I was falling apart," Gallander said.
She suspected Lyme because she'd had tick bites as a child. She took antibiotics for and got better.
"We're done with Lyme disease and then all of a sudden, the symptoms started coming back," she said. "No doctor would take me because I had the Lyme diagnosis, it was like I was branded with the Scarlet Letter of Lyme disease."
Gallander now goes to a doctor in Minnesota and is back on antibiotics.
Craig and Lisa Wilson have spent $15,000 seeing a Lyme doctor in California. Now he's on antibiotics.
"Being one of the greatest medical cities in the world and the idea that I have to fly to California to deal with this is insane," Craig said.
"I have at least 400 children who are from Texas who could not get treatment here," Connecticut Dr. Charles Ray Jones said.
Dr. Jones is considered a pioneer Lyme physician by patient groups.
One of the first symptoms is a rash that often looks like a bull's eye rash. Doctors agree that a few weeks of antibiotics can cure it. The controversy is over whether there is "chronic "Lyme with weakness, joint pain, and sometimes neurological problems that can come much later; and whether it's right to give months of antibiotics to treat it.
"The treatment should depend on response to therapy, as it should with most diseases," Dr. Jones said.
Dr. Jones typically gives antibiotics for one to three years but gave them to one patient for 16 years, to kill Lyme that he says mutated.
"The danger is not in treating long term, the danger is in treating and stopping prematurely," Dr. Jones said.
"Prolonged antibiotics have been studied by four national institute trials and have not been shown to prove any benefit compared to the four-week treatment," said Baylor infectious disease professor Dr. Carol Baker.
But Dr. Baker empathizes with desperate patients.
"I understand that you're looking for answers. There aren't answers. But don't go bankrupt because some doctor tells you I'll treat you with a year of antibiotics and this will make you well," he said.
Craig still takes antibiotics and says that's why he's back at work.
"I'm only better because I've been on three months of super heavy antibiotics," he said.
Lisa was told she needs antibiotics, too.
"I'm going to try this herbal approach first just because I know the antibiotics bring on a whole other set of problems," she said.
"Could Lyme, could this bacteria set off all these other symptoms? There's just no evidence and people have looked hard but we need to keep looking," Dr. Baker said.
Gallander, who works in the medical industry, is hoping those answers come soon.
"I'm waiting for the day where I can feel good again," Gallander said.