Putnam: Pen is Holt man's sword in Lyme disease battle
Most likely he was bitten by a tick while camping up North but he never felt the insect attack nor saw the classic bull’s-eye rash that appears after a bite.
- To vote: www.bxprotocol.com/contest/
A Holt man suffering from Lyme disease is competing in an unusual — you might even call it bizarre — essay contest, hoping to win a controversial course of treatment for the symptoms that have all but taken his life away.
Phil Moldenhauer, 61, a retired sports editor, is one of 20 writers hoping to win a year’s worth of home-based treatment from the Hong Kong-based Delta Institute. Many of the contestants have Lyme disease while others are fighting cancer.
An online vote on the best essay — selected from about 1,000 entries — ends Sunday. Popular votes and an advisory council will decide the winner.
Moldenhauer penned a four-page essay about his life since Lyme symptoms began to surface 16 years ago when he was working as the Lansing-based sports editor for Newhouse Newspapers, now known as MLive. Most likely he was bitten by a tick while camping up North but he never felt the insect attack nor saw the classic bull’s-eye rash that appears after a bite.
An intensely private man, Moldenhauer opens up in his essay where he describes the debilitating symptoms, the long road to diagnosis and the cure that eludes him.
“Misdiagnosed – not uncommon for chronic Lyme patients – by a variety of more than two dozen doctors and specialists from 2003 to 2006, I was completely bedridden for a year (2007-2008) when I struggled just to get out of bed every day…” he wrote.
He frequently prayed to die, he revealed.
“Chronic Lyme is a horrific, misunderstood and often crippling infectious illness in which victims receive little or no support from the U.S. government…” and establishment medical groups. Insurance covers few of the services he has sought, he wrote.
Before moving to Michigan, Moldenhauer was a sports editor for the Houston Chronicle and USA Today. I worked with him for years at the MLive bureau and knew he had some unexplained symptoms that started to surface around 2002. Back then he was a strapping 6-foot 3-inch former college athlete who chopped his own wood to heat his home.
The disease hit him hard in 2007, and he left his job and eventually received Social Security disability benefits.
“Words cannot do justice to the incredibly debilitating condition I was in during the bedridden year of 2007-08 when my quality of life was totally taken away from me – the constant pain, exhaustion, weakness, lethargy, despair and cognitive dysfunction as the Lyme bacteria (Spirochetes, which are, literally, infectious tiny bugs) buried their way into my muscles, joints, bones, brain cells and other soft mucous-like tissue (including my eyeballs).”
His symptoms subsided in the fall of 2008 when he tried oxygen treatments at a nonprofit facility in northern Ohio. It’s the only treatment that’s worked out of dozens he’s attempted.
“Miraculously, the treatments worked and I was given my life back – not 100 percent, but varying degrees of improvement physically, mentally and emotionally,” he wrote.
He took his then 8-year-old son to his "old stomping grounds" in Austin where he had attended the University of Texas and they enjoyed his son’s first college football game. There were other family trips, too.
“It was one of those periods in life I will be eternally grateful for and blessed to have had.”
Then he relapsed in January 2009 and more oxygen treatments failed to work.
He also tried a course of treatment in New York City that originated in Germany. While the doctor saw benefits for other Lyme patients, it didn’t help him.
Moldenhauer estimates he has spent $150,000 seeking various treatments. So many have failed that he’s skeptical about new ones.
"I do believe there are plenty of scams out there,” he told me Tuesday. “You do get to the point where you’re skeptical about anything.”
Still, he wants to attempt the Delta Institute’s plan. He attended a two-hour webinar and read testimonials. The treatment is described as “bioelectric” with a strict diet and daily feedback.
Winning the essay contest will let him try the treatment without compromising his family’s security. Delta estimates the value at nearly $17,000. It’s clear that it is controversial as the website has a blog that addresses critics who claim the treatment is useless.
Moldenhauer said the U.S. lags behind Europe and Asia for Lyme treatment though he says there's growing attention and awareness.
He credits his wife, Lisa, who works for the state retirement system and son, Michael, 15, a sophomore at Lansing Christian High School, for keeping him going. He’s the son of a minister, and church and faith are part and parcel of his life. He’s a member of Our Savior Lutheran Church in Delta Township.
Having a child later in life has been a blessing, he said, and he describes his relationship with his son as incredibly close. Each day he tries to push through his extreme fatigue to be there for his son.
“I used to say Michael, his presence has saved my life. Really the accurate part is that God has saved my life through Michael,’’ he said.
He wants to win the contest for the glimmer of hope that it will give him but he will accept it if he doesn’t. And, he’s moved, he said, by the stories of the other 19 contestants.
“If I don’t win it, it just means somebody else needs it more than I do,” he said.
Judy Putnam is a columnist with the Lansing State Journal. Contact her at (517) 267-1304 or at jputnam@lsj.com. Write to her at 120 E. Lenawee St., Lansing, MI, 48919. Follow her on Twitter @JudyPutnam.
To vote
Moldenhauer's essay is No. 9 on the list: http://www.bxprotocol.com/contest/