Portrait of Connie, May 2009

EARLY SYMPTOMS

In 1992 I was involved in a motorcycle accident where I suffered a neck injury, which left me with a host of neck, back and nervous system issues. I suddenly was suffering from migraines and constant pain in many parts of my body. Month after month I went to an osteopathic doctor for treatment, seeing only moderate improvement. I continued to do so with a new DO after moving to New Hampshire to start a job with the US Postal Service in 1995. I had recently gone through a divorce and the added stress of a new job plus the move overloaded me. I developed an anxiety disorder and ulcerative colitis, which complicated my physical ailments.

After remarrying in 1999 and moving to a rural town in southwestern NH, I started to feel worse instead of better. There were a lot of stressful things going on in my life at the time and the fact that I worked nights didn’t seem to help. In 2001 I had complained to my primary care physician about a number of symptoms that I thought could be anemia, but all tests were negative. My stress and anxiety levels were high, and since I had a history of PTSD, he put me on depression medication. After nearly a year, things had settled out enough in my life that I was able to stop that medication. I was still having headaches and chronic pain so I continued to see my DO every month. My husband began to question his competency, wondering why I had been seeing him for so long without getting better. I chalked it up to the nature of a neck injury, the fact that colitis is an autoimmune disease and the poor sleep from working nights. There were so many reasons why I just couldn’t get better. All I could do was live day to day and hope tomorrow wouldn’t be as bad.

LYME DIAGNOSIS

Fast forward to early 2007. We had moved to southeastern NH to shorten my drive to Maine where my daughter was still going to school (at my alma Mata) and where my family lived. I began to experience bouts of vertigo and decided to see my PCP for help. During the exam the doctor noticed I had an irregular heartbeat. Being a good patient, I passed this information on to my DO at my next visit. He paused for a moment and said, “I want to have you tested for Lyme.” Then he explained that the vertigo and irregular heartbeat together were symptoms of Lyme and he thought he had been “feeling” something in my nervous system consistent with his other Lyme patients. He was sure I had Lyme and insisted I get tested through a lab in California that specializes in Lyme.

Positive. By IGeneX standards, I had Lyme. By CDC standards, out of a necessary five positive markers I had four, plus one indeterminate (not negative, but not quite positive enough): as close as possible. I wanted to believe it. I wanted to deny it. I wanted it to be someone else, but not me. My DO was persistent yet understanding. He wanted to get my treatment started right away. After a weekend of discussing it with my husband and mourning the diagnosis, I started treatment. In the following months I went through tough days and horrible days. There were not many good days. I ached, I felt sick, I herxed (short for Herxheimer reaction when the bacteria die off and dump their toxins into your system all at once) at which time I would sleep for 16 hours. My husband had to lift me out of bed and walk me downstairs to go to the bathroom or eat and then help me back into bed. I don’t’ know how I managed to continue working nights full time.

Between the onset of my vertigo and my Lyme diagnosis, I developed severe brain fog. I couldn’t finish a sentence or remember what someone had said to me five minutes before. I was nauseous from the vertigo and its treatment and I had no energy. My body ached all over. I couldn’t stand in one place for long because my feet hurt too much. If I sat for very long, I would be stiff and sore when I tried to get up. How could I feel so old when I was only 42? The neurological symptoms piled up…eyelid and face twitches, tingling and numbness in my hands, stiff neck, knee pain, back pain, worsening eyesight as well as the vertigo and irregular heartbeat…all of the classic symptoms of Lyme, yet I still hesitated to fully accept the diagnosis. That happened gradually and as I educated myself about Lyme, I began to see Lyme everywhere, including in myself.

At my next visit to my PCP, he referred me to their resident infectious disease specialist. After meeting with him for less than 10 minutes, telling my story and showing him my test results, I got a dose of reality that I had only read about. He didn’t believe I had Lyme. He tried to explain away my symptoms because of all the other health problems I had. When I asked him what he thought I had, he said, “I’d sooner diagnose you with MS than with Lyme.” MS? I was in disbelief and I started to question it myself until he made a statement that shocked me back to reality. He said instead of Lyme, he thought I had a neurological disease. I was speechless (and not just from the brain fog). My head was screaming “Lyme IS a neurological disease!” Suddenly I realized that he was among the group of doctors who don’t believe Lyme is as prevalent as WE know it is. I decided an argument would be futile so I thanked him for his time and left.

For the past two years I have been on a number of different combinations of medications. Some have worked better than others, but that is the nature of Lyme treatment. What works for one person may not work for another. I have slowly regained my mind and body, though at a cost. Like others, I have had to modify how I live. I still work nights, but I take time off when I feel I need to recharge. I try not to push myself beyond my limits unless I know I can make up for it soon afterwards. My family has grown to understand how I cope with my limitations and have made accommodations to help me. For that I am ever grateful.

HOPE

I don’t know what to say about what gives me hope; I just wanted to feel better. I was sick and tired of being sick and tired (cliché, but it fits). I needed to keep going for my daughter (who graduates from high school this year) and my husband, whom I love traveling with. He was my rock through the toughest times. After his long days at work, he would do all the household stuff I just couldn’t handle so I could sleep more. He held me when I needed to feel safe, cried with me when I was having a particularly hard day and encouraged me when I wanted to give up. Most days he would come home, cook dinner, and then ask, “Which meds do you need?” and go get them for me so I could just relax on the couch. He took care of me and made me feel like I really could get through it all. For that I can never thank him enough.

Outside of my family, I found hope in an online support group who helped spread ideas and information as well as chare stories and encourage each other. Oddly enough, my hope came in reading of someone else’s hardship. It made me realize that no matter how bad I thought I had it, I was really one of the lucky ones. I could still work full time and managed to have a relatively normal life. If these people could soldier on, so could I. My thanks to them for sharing their lives with strangers that they may never even know they helped. Through them I discovered a website created by a woman who has Lupus. www.butyoudontlooksick.com Lyme and Lupus have many similar symptoms, like a lot of other autoimmune diseases. Her Spoon Theory summed up my life with Lyme and I have used the story to help explain to friends & coworkers how I deal with Lyme day to day. Many thanks to her for sharing her hope.

INSPIRATIONS

Besides my family, I am inspired by my hobbies of photography and traveling. Photography lets me experience beauty and emotion and shows me that there is a great overall plan to the world. It makes me want to get up and out to enjoy nature and take part in life rather than fade away on the sidelines. The thought of traveling to somewhere new excites me. I feel like a new person when I’m in a new place. If I’m traveling with others and having a bad day, I will often put on a brave face to make sure those around me don’t get bogged down feeling bad for me. Oddly enough, that has helped me get through some tough days. It’s amazing how much strength you can have for another’s sake when you don’t have the strength for yourself!

FINAL THOUGHTS

Everything happens for a reason. I have always believed this and have tried to see the greater good that comes from adversity. Though my battle with Lyme disease has come at a personal cost, I have already seen some good come from it. While on a business trip for the Postal Service, I was discussing the effects of one medication with a man who worked in the Trenton, NJ postal facility that was shut down because of the anthrax mailings. As a precaution, everyone who worked there was put on Cipro, which I had recently been on. I explained that I was taking it for Lyme disease when the man sitting behind me from Albany, GA suddenly said, “You have Lyme? What are your symptoms?” The intensity in his voice was overwhelming. He had been bitten by a tick six months prior and had since developed serious cognitive issues and vertigo. When he heard that vertigo was one of my main symptoms, he said, “I think I’ve got it!” That afternoon he went to the local hospital and insisted on being tested. As it turned out, he did have Lyme. He immediately began treatment and has since recovered well. If not for that chance meeting and the discussion about anthrax and Cipro, he might not have been diagnosed soon enough to recover so well.

The bottom line is that I have Lyme. It is personal to me, but I choose to share my story in the hopes that someone will be helped by the experience I have to offer. I feel that I will never be totally free of Lyme because of the length of time it ran unchecked in my body. Today I alter how I do certain things in order to maintain some semblance of normalcy. I have been off all Lyme medications for only a month so I can get a better understanding of how well I am. Maybe I’ll stay off them, maybe I won’t. That remains to be seen. I don’t know what tomorrow will bring, but I’m doing what I can to enjoy today.

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“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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After reading about my Lyme blog on Twitter, Pam agreed to share her story of hope and her experience with Lyme. Here is Pam’s story.

I’ve probably had Lyme since the 1960’s.  I found out I had Lyme in a chance meeting in 2005 with a Russian-trained physician and medical researcher who connected many seemingly unrelated dots in my health history.

Along with brain fog, vertigo, lack of verbal fluency, sinusitis, and joint tenderness, my most serious Lyme issue has been the loss of my left hand and lower arm.  One cold winter day in 1983, I went to put my left hand into a glove and couldn’t move my thumb. By the next day my wrist had dropped and I lost the use of the whole hand. Numbness, tingling, and no strength. Just like that. No warning.

Like many others with Lyme, I trooped from specialist to specialist, but no one knew for sure what my problem was. Even a week in the hospital turned up nothing definitive.  I was sent home on high doses of Prednisone. When I learned how dangerous steroids are, I stopped taking it after five months. No one ever tested me for Lyme.  In the back of my mind, however, I thought the cause might be a virus. Guess I wasn’t too far off.

Enduring Hope

Lucky for me I trusted my instincts and never pursued further diagnosis and treatment until my chance meeting in 2005.  Yes, I might have gotten a Lyme diagnosis sooner.  But more likely I would have spent large amounts of time and money on multiple misdiagnoses with multiple treatments that didn’t work. Trusting in my innate intuition has always been my hope. It’s never once let me down, even if no one else agrees with me.

I’d love to be able to report that after 3 1/2 years of treatment, my Lyme is cured.  It isn’t, but I am a lot better.  The brain fog has lifted. I can find appropriate words. My hand is still weak but I have much greater range of motion.  The battle isn’t over, but I so appreciate that I know who the enemy is.

Inspiration

My inspiration through all the ups and downs of this frustrating disease has come from my husband (who probably got Lyme from me), my dedicated doctors, my friends and acquaintances with Lyme, and the greater Lyme community.  It’s very comforting to know that others understand and care about what I’m experiencing.

Also, once I stopped fighting the disease and the medical establishment that doesn’t want to admit it’s a big problem, the more at peace I’ve become in my own skin. My wishing things were different doesn’t change them.  It is what it is and I’m still learning to live as best I can knowing that.

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