Hage: Lyme disease touches many readers
For months I had wondered what happened to Robin Suhsen, the branch librarian at the Princeton Area Library.
Each Friday I would get an e-mail from Robin, keeping me up to date on all the events at the library, and I would then share them with you, our readers, through the weekly Library Notes column.
But the e-mails stopped in late summer. All calls to the library informed me that Robin was out sick.
I later learned that Robin had contracted Lyme disease. I didn’t know a lot about Lyme disease, other than it comes at the hands of a tick bite and sometimes shows the same signs as the flu.
We caught up with Robin a few weeks ago, after she agreed to bare her soul and share with our readers how she was afflicted by, what I learned to be, a terrible disease. What I also learned through the “Reader Comments” section of our website at www.unioneagle.com was how many of our readers had similar, painful and debilitating bouts with Lyme disease.
I honestly had no idea what an awful ordeal people can suffer at the hands of Lyme disease.
It isn’t always easy putting one’s story out front and center in a small community like Princeton. But I’m thankful Robin and her husband Scott did so. It was an important story to share.
As a result of Robin’s story, I became familiar with another woman with local ties who suffered at the hands of Lyme disease. Her name is Jean Davids. She lives in Big Lake now but grew up in Princeton. Her parents are Betty and Ernest Mathison of Princeton.
Betty passed our story on Robin along to Jean. Jean then shared with me her story because Robin’s story reminded Jean so much of what she had gone through.
Jean went to a clinic in Monticello with a pain in her back and a strange looking bug bite behind her right knee.
A physician’s assistant saw Jean that day and diagnosed her as having a spider bite and prescribed an antibiotic cream.
“No tests were done. She said if it got worse, to go to the ER,” Jean said.
Later in the day, Jean’s pain became unbearable. That night she made that trip to the emergency room.
She was in severe pain and had a fever that at times reached 104 degrees. Her pain mounted. She was hospitalized for days, at which time she says she was put on heavy-duty pain medication.
“The drugs put me to sleep for two hours and then I had to endure two hours of sheer pain,” Jean said.
She pleaded with her medical team to do something. Anything.
They switched me to once every two hours with a different dose.
“This meant I got one hour of relief and one hour of sheer pain. That was an improvement, at least, because I only had to endure one-hour increments of pain,” she said.
During her hospital stay, Jean pointed out that the “bug bite” had gotten larger after being on the antibiotics and not smaller. The doctor looked at it and once again Jean says it was discounted as a spider bite. She said she felt this was ridiculous but was in no condition to argue the point. Her situation didn’t get better from there.
Finally, after three months of this routine, Jean’s husband, his sister (an RN) and a friend (also an RN) concluded she suffered from Lyme disease and insisted the doctor test her for it. Her doctor said she doubted that was it, but two tests they ran came up positive. Finally she was treated for Lyme disease. Doctors also tested her for Polymyalgia Rheumatica, which was positive as well.
Because of the incorrect treatment, Jean was to be treated with prednisone for over 1 1/2 years, and because of the long-term misdiagnosis of Lyme disease she was on antibiotics for at least three months, ensuring it would kill the second round of the Lyme disease that comes about from having it so long.
The long-term side effects of being on prednisone were horrible for Jean.
Prior to this whole incident, she had lost 30 pounds through working out. The Lyme disease caused her to lose another 30 pounds.
Due to the side effects of prednisone, she gained back every ounce of that total weight. In addition, she was continuously sweating and had to carry towels with her everywhere she went, just to mop up. This side effect lasted for around four years because it took so long for it to get out of her system, Jean said. “Finally, about four years after first getting Lyme disease, I am feeling normal again,” she said.
Jean’s ordeal started back in 2006. She went down a long road that she says would have been unnecessary if medical teams would have known better and just done the test for Lyme disease or had put her on the correct antibiotics right away.
“Fortunately, I don’t seem to have any real after effects that I can tell. But, it was pure hell going through it,” Jean said.
Jean wrote me after reading Robin Suhsen’s story in the Princeton Union-Eagle and said she has told her story whenever she can.
She says she has helped prevent at least 3-5 other cases of Lyme disease from going undiagnosed.
She recalls when a friend told her she was having some back pain and assumed it was because of her bed. But she said she had found a deer tick as well.
Jean recalled how she had no rash, no swelling of joints, just the “bug bite” behind her knee and the severe back pain.
“I told her to get in and get treated for Lyme,” Jean said.
She was put on the usual treatment for Lyme disease and was able to be better within the standard 10-day treatment and was able to get relief from the back pain the second day after being on antibiotics.
Like Robin Suhsen’s story, Jean Davids has an important story to share.
Through the sharing of these stories by two women willing to put their personal horror stories out there for all to read, maybe other cases of Lyme disease can keep from going undiagnosed.
Jeff Hage is the editor of the Princeton Union-Eagle. Reach him by e-mail at email@example.com.