Man rebounds after ALS diagnosis replaced by Lyme treatments
By KRISTI L. NELSON, nelsonk@knews.com
August 28, 2006


TODAY: Claire Culver hugs her husband, Michael, in their Sevier County home as their dog Chance fights for attention and their other dog, Mae, looks on. Four years ago, Michael, now 38, was diagnosed with ALS and told his muscles would slowly atrophy and he would die. Then, two years ago, a different doctor told Michael he suspected Lyme disease. After several courses of antibiotics, Michael no longer uses a wheelchair and has regained some of his physical losses.

In August 2002, Michael Culver got a death sentence.
The clinical term was ALS, or amyotropic lateral sclerosis. Better known as "Lou Gehrig's disease," for the baseball player who died of it at age 42, the progressive neuromuscular disease destroys motor cells, cutting off communication between the brain and muscles. The result: eventual near-paralysis of the body with difficulty speaking or breathing, all while the mind stays intact.





"I spent all of 2003 just getting worse," said Michael, 38. At that point, barely able to move at all, he spent his time in a wheelchair in the former garage of his house, which had been converted into a bedroom and bathroom because it was the only part of the house that was wheelchair-accessible. While his doctor prepared to put him on a respirator and give him a feeding tube, Michael said, "I'd pretty much come to terms" with the idea of death.

Then he got a second chance, from a controversial treatment for a disease doctors had told him he couldn't have.


A colleague at Michael's employer, Phoenix Data Systems, had a "friend of a friend" diagnosed with ALS who turned out to have Lyme disease instead. The colleague insisted Michael had nothing to lose by seeing the friend's Anderson County doctor.

THREE YEARS AGO: In this photo from April 2003, Michael Culver, diagnosed with ALS and having lost much of his physical abilities, sits in a wheelchair in the former garage of his house.

Michael wasn't sure. After he and his wife, Claire, had been featured in a News Sentinel article in spring 2003, calls came in from around the country promising him cures for a cost. Skeptical by nature, he didn't fall for any of them.

But he agreed to see this doctor, in part because Michael, formerly an avid hiker and backpacker, knew he had been bitten by ticks in 1999 and 2002 and had had the trademark "bull's-eye rash" associated with tick bites. (Lyme disease is carried by the deer tick.) Yet the test he was given to measure antibodies to Lyme after he was bitten in 2002 came back "negative."

Though the incidence of Lyme disease nationwide has risen more than 20 percent over the past 10 years, reported cases in Tennessee haven't risen significantly. Whether that's because Lyme disease is uncommon here or because it's often overlooked is a source of debate in the medical community.

"I'd had a Lyme disease test," Michael said, and doctors had told him "you can't get (Lyme) around here."

Then, he thought, "What have I got to lose?"

The Western Blot test again found Michael "negative" for Lyme; for such a diagnosis, at least five antibodies need to top a certain level.

But "I had seven that were 'this close,' " Michael said. So the doctor, who declined to be interviewed for this article, determined Michael had been exposed and started him on heavy-duty oral antibiotics.

"There was a method to (not warning me about the side effects in advance), because when I started taking the antibiotics, I got A LOT worse," Michael said.

But that reaction was what the doctor had expected. He said that indicated the bacteria that cause Lyme were present in Michael's body, giving off toxins in reaction to dying from the antibiotics. He wanted Michael to visit a specialist in Philadelphia, doctor of osteopathy Gregory Bach, who was better equipped to deal with advanced Lyme.

It was an expensive trip, in addition to the visit not being covered by insurance. The Culvers and their parents covered what they could, and Phoenix Data Systems picked up the rest.

Still, "we were prepared to hear a quack story," said Michael, laughing. After all, his ALS diagnosis came from both a local neurologist and at the ALS Center of the Carolinas.

"Hope becomes a dangerous thing," Claire said, and they were afraid to hope for the best.

Bach did his own tests and agreed with Michael's doctor. His plan: Keep Michael on heavy-duty antibiotics until his antibody levels rose enough to net him a positive Lyme test. Then, armed with that clear diagnosis, Michael's treatment would be covered by his insurance policy.

"I was like, 'You mean he's not going to die?' " Claire said. "I just couldn't believe it. (Bach) was so un-morbid, like, 'Oh, yeah - we can fix that.'"


Prolonged antibiotic therapy as a treatment for Lyme disease is a source of conflict between medical academics and insurance companies (who say the costly treatments have no benefits and are hard on the body) and doctors who utilize the aggressive antibiotic therapy, pioneered by Lyme specialist Joseph Burrascano. Burrascano's treatments drew praise from his patients but criticism from the medical establishment.

Michael took three months of "massive" doses of antibiotics, oral and injectable. For several weeks, he was so sensitive to light, "I literally lived in the dark," he said. With Claire losing both parents - her father to myriad health problems and her mother to ovarian cancer - he was often alone.

"I was sitting quietly in a dark room listening to books on tape," he said. "I had to put on sunglasses to watch television in the dark."

But his antibody levels increased, and he was able to get a Lyme diagnosis. Then Bach referred him to New Jersey neurologist Richard Rhee, also a clinical professor of neurology for Robert Wood Johnson Medical School. The Culvers' insurance policy covered that visit.

Rhee had Michael get a port in his chest so he could more easily receive strong doses of IV antibiotics at the same time he was taking oral antibiotics. He took six months of that particular therapy, followed by another "aggressive" course of antibiotics.

"I got really, really sick," he said. "Then I started to get better."

The first thing he noticed improving was his manual dexterity. At one point, he'd completely lost use of his right hand. "When he started doing magic tricks (a favorite hobby) again, I knew he was back," Claire said.

By this time, the Culvers had sold their own home and moved into her late parents' Sevier County "retirement" cabin, which was built to be wheelchair-accessible. Michael had grown accustomed to transferring himself from the bed to the wheelchair, from the chair to a shower bench, and so on. One morning, he said, "I was feeling confident. I thought maybe I'd get my cane and try to walk to the bathroom."

And he found he could. "I was all over that!" Michael said. He began walking a little each day.

"I was over the moon!" Claire said.


Michael last used his wheelchair in June 2005. Gradually, he's made progress, lifting weights and continuing antibiotic treatment under Rhee's supervision, though he's currently taking a break to let his body heal from a car accident.

He is afraid he may never recover some things he's lost, like short-term memory and reading comprehension - both necessary to do his old job as system administrator. But, oddly, though he loses information quickly after reading it, he can retain it if it is read to him. These cognitive symptoms are consistent with Lyme disease, he said.

"If I read it to him, even if it's an incredibly technical manual and I have no idea what I'm even saying, he remembers it," Claire said.

Recently, Michael was approved to get Social Security disability payments, which he appreciates but finds "depressing."

All his doctors "are saying I have a great chance for recovery," he said, "and then a government doctor says I am going to (need disability payments) for at least five to seven more years" because he won't be able to do his job.

Thinking about it too much upsets him, but Michael's found something to keep him occupied: the restoration of a 1987 Fiero GT, the car he "aspired to" in high school, when he had an '84 Fiero. He calls the car, which now is almost completely restored, a "community project," with people from as far away as Georgia contributing help.

"They knew I was looking for something to occupy me," he said.

Michael also still has a lot of joint and soft-tissue pain, especially after days he exerts himself. He's hoping that will improve, along with his cognitive skills, after treatment clears more of the Lyme bacteria from his body, and time heals his body from the treatment.

"I just want to continue to improve," he said, "but if I never get any better, I'm not in a terrible place right now. This is certainly better than the alternative."


Kristi L. Nelson may be reached at 865-342-6434. She is health writer for the News Sentinel.

Copyright 2006, Knoxville News Sentinel Co.
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