Portrait of Karen, April 2009

I recently interviewed Karen about her experience with Lyme and her story of hope. Here is what she had to share with us.

First signs of Lyme

As a school teacher, about one year prior to the diagnosis of Lyme (May 2007), she noticed she was constantly tired and continually getting sick, going from one cold to another, one flu to another. She started to suffer shortness of breath and thought she might be developing asthma. Her heart then starting missing beats, which brought her to her doctor who ran all the tests for this type of ailment but found nothing at all. She then went to the ER after a frightening episode and again nothing wrong was found. She was given diagnoses of anxiety. Her doctor prescribed Lexipro for the “anxiety” and when she took the first dose, experienced the first of many severe paradoxical reactions drugs and medications. She had to take a month off work to recover and, and then started back teaching part time, but by this time symptoms of cardiac and neurologic Lyme had developed and she had to stop working again.

The Lyme Diagnosis

In May of 2008 a clinical diagnosis of Lyme was made by a naturopathic doctor who referred her to a Lyme literate doctor in Southern Maine for treatment. After further testing, she was put on antibiotics and the Zhang Protocol, but after several months, she was taken off the antibiotics, and remained on the Chinese herbal medicines. After about 4 months she started to feel better.

Hope in frightening times.

Throughout all of this, it was hard to maintain hope and during the first months she felt she would never recover. However, her husband was a greatest giver of inspiration and motivation. She’d ask him if he thought she was getting any better and he would say, “Yes, you’re up and moving more and you’re able to do more, I think you are a lot better, it is just going to take time.” Over and over again, she needed to hear that.

Two people in particular, both familiar with Lyme and willing to talk with her at any hour of the day helped her through countless frightening episodes. One was her naturopathic Dr. and the other a local support group coordinator who has Lyme herself. Their availability during the first bewildering months was a gift she feels she can never repay.

Her friends and prayer partners were wonderful. And as she went through her battle with Lyme she drew closer to God and found in Him the strongest source of comfort and encouragement.

Words of inspiration from a friend

During one memorable visit from friends, she was encouraged by a mother whose son also had Lyme. She told Karen, “Your life isn’t wasted, God never wastes a life. Find the joy in each day. This is just a season of life you are going through and it will pass. Anything that hits us comes through God’s hand - let him work his plan for you. This isn’t a bump in the road that got you off course, it is the course. Live it! Some really important things are happening to you right now.” She said, “Don’t make this illness your job. Don’t dwell on it - reach out and connect with other people.”

Final thoughts

Throughout the darkest times dealing with the disease, Karen feels it would be helpful to have a Lyme buddy system so that you could speak with someone who has had the same symptoms you are experiencing and has been where you’re at and could give advice and encouragement. (I’m working on that one, Karen!)

Although expensive, she feels that there should be some kind of hospice care for people with severe Lyme symptoms or perhaps creating some type of home support for people who are alone with severe Lyme. Even a daily phone check would be extremely helpful and reassuring to homebound cases.

Karen feels that awareness of the unique problems of dealing with Lyme needs to be raised. People with Lyme do not recover overnight and it is often taxing and frightening to care for someone with Lyme. The best encouragers and supporters are those who have experienced Lyme themselves. She would like to put her experience with Lyme to use by working with Lyme support groups.

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This entry was posted on Wednesday, May 6th, 2009 at 4:33 AM and is filed under Living with Lyme. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.