“When I used to look out the window and see my children playing Frisbee, I became inspired to get well enough to be able to just throw a Frisbee back to them, even if I could not run to catch it myself.” Portrait of Amie, April 2009

I interviewed Amie about her experience with Lyme and this is what she told me.

Early Symptoms

Amie started having symptoms in the summer of 2006. The symptoms started with feeling tired and old, having an extremely hard time going up the stairs, aching knees, and being continually out of breathe. These initial symptoms led to others; cognitive problems such as remembering things were becoming increasingly more noticeable. She had just started a new job working on a computer and severe pain in her wrists and arms ensued. She then saw a doctor and was told her she had carpal tunnel. The pain started traveling into her other arm. Next came numbness and tingling that started on her right side, then traveled to the left side, then spread to all her extremities. Getting out of bed she would have the sensation of stepping on glass. She began shuffling like an old person or like a person with ALS. She then started having vision problems, floaters, and blurriness along with severe headache and neck pain. At that point she went to the emergency room thinking the blurry vision and tingling etc, was perhaps a stroke. There, the hospital thought it best that she to follow up with a neurologist because they suspected she might have MS.

At this stage in the story, it bears pointing out that she didn’t even had a primary care physician (PCP) as she was so healthy: she was always outdoors, biking, camping, hiking, etc. She made an appointment with her new PCP, who took a wait-and-see approach, put her on pain killers and recommended she see a rheumatologist and neurologist. She didn’t mention her cognitive problems because she didn’t think they were related. While she waited for the appointments with the specialists, she called the PCP several times and told him that she couldn’t carry on with painkillers alone as the pain was too intense and she had young children to look after.

The Lyme Diagnosis

Carrying out her own research online, she then thought about Lyme disease as a possibility to what was ailing her. There were many symptoms that seemed “non-specific”and unrelated to one disease, but when you put them all together it kept coming back to Lyme Disease. She told her PCP what she thought only to be told by him that there was no Lyme in her area as no deer ticks lived in that area.

In October of 2006, as the pain and weakness grew more and more intense, she was forced to go back to the ER. There a doctor told her that there were so many things she could have that it would be unlikely they could test for them all or find out what was wrong and that it was pointless to test as it was too expensive. Though they tried to send her home, she insisted on being treated and getting tested for Lyme Disease. At this point in time, she had no feeling in her feet and was in so much pain that the doctors at the hospital found a neurologist, who, lucky for her, took her seriously. The neurologist ordered an Epstein Barr Virus test as well as a Western Blot both of which came back positive.

Going back to her PCP, she was put on oral doxycycline. Having been on doxycycline for one day, she started to have a severe herxheimer reaction (known as herx). She had to go back to the hospital yet again, this time waiting to see an infectious disease (ID) doctor. Whilst waiting, she began having increasing involuntary muscle spasms all over her body. The ID doctor sent her to the lab for more tests. Here she collapsed and couldn’t feel her legs at all. Amie said this was possibly one of the most terrifying moments of her life. After begging for help, she was finally admitted to hospital and put on IV antibiotics for Neuro-Lyme Disease. She was there for a week herxing the whole time. The twitching was so intense they thought she was having an aneurysm. In her heart she thought they were wrong, with a MRI proving there was no aneurysm but the doctors were surprised at how sick she was and how intense her symptoms were. (the doctors did not acknowledge what she was experiencing as a herx reaction) She tried to walk after a week, finding that extremely challenging. Despite this, she was sent home remaining on an IV for 28 days. After coming off the IV, she was well enough to not be in hospital, but was still very weak and suffering from daily headaches, muscle weakness, balance problems and dizziness. For months she was unable to drive and walked with a cane. When she went shopping she had to use a wheelchair or scooter to get around. Even though her symptoms persisted, she was told at the follow up with the Infectious Disease doctor that she should be 100% better after 28 days of antibiotics, and if she was still having symptoms it must be from something else other than Lyme Disease. She felt lost, scared, and had no direction to go in.

Relief at last

Through word of mouth she was able to find a doctor in Boston who was familiar with Lyme Disease and the persistence of infection if not caught early. It was a relief to find a doctor who knew what questions to ask and understood what she was going through. He put her on oral antibiotics and spoke to her PCP back at home about continuing care for her at home. That’s pretty much where she is today. She has continued to improve significantly while being treated.

“When I became pregnant I had great hope my body had healed and could produce life and could function as a nurturer.” Portrait of Amie, April 2009

Hope throughout bleak times

There were several things that gave her hope occurring at different stages of the illness. During the most severe symptoms of the disease, her mind was in a body that didn’t work at all. Her faith in God grew very strong and she developed a much stronger relationship with Him, which gave her comfort and peace when she began to feel scared. When she started to get better, music became a healing power for her. Listening to Ray Lamontagne was like a lullaby and created peace and hope that her body was slowly healing and she could see light at the end of a long tunnel. Then, over a year later she became pregnant and had great hope that her body had healed and could produce life and could function as a nurturer.

Inspiration from family

As she lay on the couch when she was sick, she would look out the window and watch her children playing. She vowed to play Frisbee and tag with her children again and be able to play an active role in their lives, volunteer at their schools, and take part in their activities.

It wasn’t just the idea of her family that inspired her, though. The idea of getting well enough to be able to help other people was a huge motivation. She feels that no one should have to go through this, and more especially go through it alone, and the idea of being part of an outreach group began to inspire her. Now she is working on providing resources, support, and hope to others and helping them navigate through this without having to start from scratch like she did.

Her family continues to inspire her every day as she deals with the chronic pain and muscle weakness. She refuses to let it stop her from living her life or affecting the lives of her husband and children. They are her biggest supporters in helping others battle this disease and raising awareness about it.

Other thoughts

Amie told me that this is a tough question, because there’s so much to say!

She doesn’t look at having Lyme Disease as being a victim, but as a gift because she never appreciated the little things she was able to do; to get up and be with her children, to go into their classes at school to help out, even to lift a glass of water to her mouth. Having Lyme has given her deeper compassion, and helped put things into perspective and not take anything for granted. She said that although having Lyme Disease makes life much harder, in some ways it also makes it much sweeter. Focusing on all that she has to be grateful for and trying to prevent others from going through this is what helps to give her hope.

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This entry was posted on Sunday, May 17th, 2009 at 8:10 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.