Digg it del.icio.us AIM DIANE STAFFORD AT WORK
Wrong diagnosis leads to years of ‘bad days’
By DIANE STAFFORD
Here’s how your work life can be changed by something so small you can barely see it.
In May, Lenexa resident John Erickson was fired from Atronic Alarms Inc., where he’d worked since 1985. After he missed months of work, the letter from his Overland Park employer said he was being let go because of “undue hardship” on the company.
Erickson had hoped that his decade-long ordeal with undiagnosed and untreated Lyme disease — acquired from a tiny tick bite — had finally turned the corner.
For years, Erickson said, he struggled to work with excruciating headaches, back and joint pain, debilitating fatigue and kidney problems. Admittedly, he said, he was hard to get along with. A hard-driving, results-oriented person by nature, his personality changed for the worse as the chronic physical condition took its toll.
But since December, Erickson has been getting aggressive treatment that caused him to miss work completely. Now he feels better than he has in years. He’s gung-ho for a job search. But first, he wants to share what happened to him in hopes of helping others get earlier diagnosis.
“Nobody mentioned Lyme. Nobody checked for it,” said Erickson, who never imagined that the tick bite he got on his back 11 years ago would affect him so profoundly.
“It drained my family emotionally and financially — and I was fortunate in that I had employer-based health insurance. Plus, I’d had a good income, I’d always lived below my means, and had a six-month savings cushion to draw on. But that’s gone now.”
Erickson finally was referred to Carol Ann Ryser, a physician who specializes in chronic illnesses with emphasis on their emotional and stress components.
Lyme, Ryser said, “is a disease that fools people. Many physicians aren’t testing for it because they’re not thinking of it.”
Sometimes its symptoms mimic syphilis. It’s caused by a similar spirochete, this one a tick-borne corkscrew-shaped bacteria. It may be diagnosed as fibromyalgia, or rheumatoid arthritis, or lupus, or multiple sclerosis, or amyotrophic lateral sclerosis, or Parkinson’s.
Patients can be labeled with chronic fatigue syndrome. Others are told they have early Alzheimer’s. Often there are manifestations of psychiatric disorders.
Ryser said that even with correct diagnosis, chronic Lyme patients deal with devastating effects on their central nervous systems. Those effects often cause changes in personality and cognitive ability.
Kathy White concurs. A former teacher living in Overland Park, White is active in the Greater Kansas City Lyme Disease Association, which has had about 500 members.
Nine years after getting a tick bite that led to Lyme, White said she’s barely able to spend half of each day out of bed. In addition to fatigue and nerve pain, she found that one of her early symptoms was the inability to call her students and co-workers by their correct names.
“I just couldn’t think. And I was so cranky,” White said.
Many of the Lyme association members have lost their jobs due to similar cognitive problems, lack of energy or frequent absences, White said.
For Lyme victims who quit and seek Social Security disability payments, the road can be long and bumpy.
There is no specific listing for Lyme under the Social Security Administration’s list of impairments that would qualify one for disability benefits. Lyme sufferers must be evaluated and have their conditions compared to listed impairments, such as those for lupus, for example.
Many sufferers try to keep working through the disease. Some take part-time jobs in an effort to keep a paycheck, effectively reducing the size of their eventual disability benefits, which are based on most-recent earnings.
Earners who didn’t work in jobs covered by Social Security, or who haven’t tallied enough years of work to be eligible for Social Security disability payments, can only get smaller Supplemental Security Income payments.
“We have members who have to go to food pantries for food because they can’t afford to buy it,” White said “Many of our members are unable to buy the pills that they need, causing them to be bedridden with fatigue and pain.”
Erickson, who says he’s hurt and angry at what happened to him, is trying to channel his experience toward a positive end: educating others about the little-understood disease.
“I went to specialist after specialist. I traveled to get second opinions. I ate meds like crazy,” Erickson said. “It was hard for me and hard for my family, and I’m sure it was hard for others around me.”
Now, he’s on a months-long treatment program that includes intravenous antibiotics. He said he still has an occasional “bad day,” but except for battling insurance companies about coverage, he’s hoping his fight is winding down. His doctor thinks that’s possible.
“When you find the diagnosis and stay with the long-term treatment … if you follow the protocol … most of my patients will get well and get back to functioning,” Ryser said.
Erickson can hardly wait. He wants to work again.
For information or assistance about Lyme disease, contact:
•American Lyme Disease Foundation Inc.:www.aldf.com
•Lyme Disease Association: 888-366-6611, http://lymediseaseassociation.org
•Lyme Disease Foundation: www.lyme.org
•International Lyme and Associated Disease Society: 301-263-1080, www.ilads.org
•Greater Kansas City Lyme Disease Association:www.lymefight.info
•Lyme Disease Network:www.lymenet.org
•Time for Lyme: 203-969-1333, www.timeforlyme.org
To reach Diane Stafford, call 816-234-4359 or send e-mail to firstname.lastname@example.org
. Read her past columns and Workspace blog at KansasCity.com.