Topic: Ohio: A Running Success- Young Runner Runs despite AS & Lyme+
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I hope someone else feels inclined to write this writer because BOY do I think she has Lyme!! She tested positive but they told her it was because she had it as a kid!! AGH!!!! We had guy in local group with AS diagnosis- all went away with abx!!!!!!!!!!!!!!!!!!!!!!!!!! ********************************************
Hilary Petersen, 22, of Mentor finishes the 31st annual Johnnycake Jog with a time of 56:30.
Despite suffering with painful AS, Mentor woman finishes the Johnnycake Jog
For Hilary Petersen, 22, running five miles was the easy part.
The hard parts were the doctor visits, uncertain diagnoses, varying medications and most of all, the pain. The pain that would wake her up at night and make it hard for her to even leave her bed some days.
Petersen, of Mentor, one of Sunday's Johnnycake Jog runners, has ankylosing spondylitis - AS, for short - an auto-immune disease similar to juvenile rheumatoid arthritis.
The pain left her practically bed-ridden, but with treatment she's reclaimed her life.
As recently as April last year, Petersen was in the best shape of her life. She ate healthy, ran three to four miles a day to train for the Johnnycake Jog, and had just been hired as an instructor at Curves.
Petersen was also studying to be a physician's assistant at Gannon University in Erie, Pa., so between her schooling and status as a bona fide health nut, she was in tune with her body. So she couldn't understand why her joints were starting to hurt.
"I noticed in May of last year that I was feeling a lot more tired and achy, like I had the flu," Petersen said. "At that point it wasn't painful, but it was annoying."
On June 4, 2006 - Petersen remembers the exact day because it is also her father's birthday - her left ankle and foot had swollen to the size of a football.
"I couldn't put any weight on the foot at all." Petersen's parents were concerned she had contracted something during a recent archaeological trip to Belize and Guatemala, she said.
"I was down there to look at Mayan ruins, and I was bitten by everything. My parents were convinced it was a byproduct of that."
Thus began a cycle of swollen joints, pain, doctors, tests and false-alarm diagnoses that took most of the summer. Before Petersen was diagnosed with AS, doctors said she could have anything from lupus to Hepatitis B.
"They really thought it was lupus, because one of the symptoms is this red, butterfly rash under your eyes. It kind of looks like a raccoon," Petersen said.
And while Petersen did have the telltale red mask, doctors later decided it was a sunburn. Tests yielded a litany of false positives. She tested positive for Hepatitis B because she received too many inoculations when she was younger. She tested positive for parvovirus and Lyme disease because she had them as a child. "I thought I had all these things at one point, then I'd get a call a few days later and it would be negative," she said.
Rheumatoid arthritis is one of the few things for which she tested negative.
Meanwhile, Peterson's life was thrown into a blender. She had to quit her job at Curves because she could hardly stand, let alone help someone train. The pain had become so intense that it only was dulled by a regiment of anti-inflammatories, like Ibuprofen, and painkillers. "It was very frustrating, and I was so scared because I didn't know what was going on with my body," Petersen said.
She had trouble sleeping because the pain would wake her every night. She became so used to having to take her pills at night that she created a ritual. She would have her Vicodin and Ibuprofen waiting on the bedstand, and some saltines and a juice box because she could not take the medication on an empty stomach.
"I had to take the straw off the Juicy Juice before I went to sleep, because when I woke up at 3 or 4 a.m., I'd be in too much pain to do it," she said.
This continued until Petersen saw a rheumatologist in late July. He discovered Petersen had the HLA/B27 gene, which is present in 8 percent of whites and puts someone at higher risk for ankylosing spondylitis. (HLA stands for human leukocyte antigen.) Realizing that Petersen's symptoms were consistent with AS, the doctor prescribed sulfa drugs that normally help.
"And I started feeling better for about two weeks. Then I came down with horrible, horrible chills. I had a fever of 102."
That was how Petersen learned she was allergic to sulfa.
Doctors switched her prescription to methotrexate, a drug that is often given to people going through chemotherapy. It helped enough that Petersen could return to a semblance of her former life.
"At that point, I felt like I could start school again," she said.
At first, Petersen did not mention her AS to classmates. She only told her close friends. It flared around Christmas and again in March, but she was able to cope otherwise. By the end of the school year, however, she was comfortable enough with her AS that she gave a presentation on it.
AS is not contagious, but it's also not curable. Petersen acknowledged that she will never be entirely rid of the disease, though it can go into remission.
Petersen takes a TNF inhibitor that stifles the immune reflex that exacerbates her pain. She takes a shot once a week and pills twice a day to manage the symptoms.
"It was like a miracle drug," Petersen said of the inhibitor. "I started feeling a million times better."
The drug, while effective, is not cheap. If Petersen did not have her parents' health insurance, it would cost $20,000 a year. Petersen's coverage ends when she turns 23 in January, and she is terrified of what health insurance might cost her.
Her parents are researching the Consolidated Omnibus Budget Reconciliation Act (COBRA) to see if they can continue her coverage after she is 23, but there is no guarantee.
"What they hope is (the inhibitor) will put my disease in to remission, so I won't need it anymore," Petersen said.
While the inhibitor has been known to put AS into remission, there is still no promise that would happen before her 23rd birthday.
Meanwhile, Petersen is content to enjoy the things she loved before AS derailed her. She started running again. She admits she is not as fast as she used to be, but just to complete Johnnycake's five miles on Sunday was a victory for her.
Petersen said her knees were sore and swollen after completing the course in slightly more than 56 minutes, but she felt good.
"I can't say I feel 100 percent. I'd say I feel about 90."
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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