The Crucible of Lyme Disease
“You have Lyme Disease.” I sat there stunned staring across the table at the doctor. He slid the report in front of me while explaining that the blood test showed that I not only had Lyme Disease but that it was very active. How could that be? I had not had contact with a tick in fifty years! Thus began a journey into the weird and difficult world of Lyme.
The beginning of this journey actually goes back to my 18th summer, the wonderful, romantic, promising summer between high school and nursing school--my life long dream. That summer was spent at our home in Chautauqua, New York, where I worked at one of the hotels during the day. The Bell Hop liked me, but I would not date him two nights in a row so he set up dates for me with different guys. What fun! In August the employees of the hotel had a cook out at “The Gorge” which was a steep hike in and out. I had no problem with the hike but several days later I became very ill with “the flu” --chills, high fever, aching muscles and joints, deep fatigue. No one else was sick. It took me several weeks to recover but even so I could not shake the exhaustion it left behind. I saw my doctor for a B-12 shot then I was off to school. All seemed well.
During my Senior Year of Nursing School I developed chest pain with a high fever and was admitted to the hospital in the middle of the night. The diagnosis: Pericarditis of unknown origin. (Inflammation of the sack around the heart) The disease was treated with Aspirin and bed rest and I was back on my feet in a couple of weeks.
Three year later found me at the University of Colorado in Boulder working on my Bachelor of Science Degree. On a lovely spring day I was sitting outside enjoying the sun with some friends when all of a sudden it felt like one of them had kicked me in the ribs--and busted a couple of them. In the next few days the pain migrated to the entire rib cage and was echoed by pain in joints all over my body. But, all the blood tests came back normal except the Epstein Bar virus test which was highly positive. I looked good, my painful joints looked good, and the doctor condescendingly assured me that all of my symptoms would magically disappear when I turned forty. He gave me Aspirin and told me to rest. Well, Amen.
Two years later I was pain free, living in New York City, and teaching nursing students to recognize and support patients with spiritual needs. But, I could not shake the fatigue and found myself wanting to go back to bed by 9AM even after a good nights sleep. During this time I met and married my husband. I was 28 years old.
I had two children, two years apart, in my early thirties. When I woke in the morning I planned our naps--theirs and mine. When I got up from my nap I thought longingly of evening when I could go back to bed. I was told that all young Moms are perpetually tired.
Well, I celebrated my 40th birthday, then my 50th, then I turned 60 and still I struggled with fatigue and chronic pain. I honestly thought I had been cursed with pain and low energy. I come from a family where it is uncool to be sick. I stopped mentioning these things to doctors because I knew I would be labeled a hypochondriac. Then in 2004 a very dear friend died of ALS (Lou Gehrig’s Disease) but the underlying cause turned out to be undiagnosed, untreated Lyme Disease. I didn’t think much about this until 2006 when I developed a butterfly rash and came up with a positive test for Connective Tissue Disease. I was tentatively diagnosed with Lupus. I went to my friend’s doctor to find out whether or not I might have Lyme Disease since my family had no history of Lupus or other Connective Tissue Diseases. By now the fatigue, malaise, and general body pain were making it difficult to function, but getting a diagnosis of Lyme was devastating! I began to research the disease and it was not pretty, but I still had no idea how long and difficult the road ahead would become.
Lyme Disease was named for Lyme, Connecticut where the disease was first recognized back in the 1980‘s as a tick borne infection. It was identified as a spirochete that bores into tissue such as the brain, heart and other organs as well as into muscle and joints. It then sets up house. The official name is Borrelia Burgdorferi after the name of the man who isolated the spirochete.( http://www.lymediseaseblog.com/how-lyme-disease-affects-immune-system) is an informative site with a clear description of how Lyme Disease takes hold and spreads throughout the body by stealth.) The organism is a cousin of syphilis and the disease can go underground for years only to resurface and cause extensive damage later. The Lyme organism can change shape, go into a cyst form when threatened by antibiotics. The cyst is not affected by antibiotics which is one reason it takes so long to heal from Lyme Disease.
So, I am diagnosed with a chronic disease that is almost impossible to eradicate in its chronic form, but which can affect the brain and nervous system as well as the heart and is considered a primary suspect for ALS, Parkinson’s Disease, Multiple Sclerosis and Alzheimer's Disease. I have carried the organism for over 50 years. Well, Amen!
The treatment to kill the little buggers produces negative effects on the body which is called a “herx,”or the die off of the organisms. I found the herx worse than the disease adding brain fog, memory loss, and balance issues to the mix. Because the Medical Guidelines for treating the disease do not include chronic Lyme Disease it is difficult to find a doctor who will treat Lyme and if he does accept patients with Lyme, he cannot take insurance. One year we spent almost $18,000.
Just after my diagnosis we moved out of Washington DC to a Town House on a lake in Northern Virginia. For the next two years I spent most of my time reading mystery stories in the recliner overlooking the lake. Within a few months I could read them again without remembering who did it! Our little Aussie pup kept me moving as I made an effort to walk regularly. Medical appointments contributed to a very small social life. I think that the worst part of the disease for me was being misunderstood. “You look so good,” they said. If I had cancer or heart disease people could relate, but Lyme Disease? Life became narrow and physically challenging. It was easy to become self-centered and to descend into depression--which is also something the disease itself can produce. The brain fog, or seeing everything through “fog covered glasses” was hard because things seemed slightly off balance. “Clear days” are stunningly beautiful to me.
I have been fortunate to have a caring Lyme (literate) doctor who was and is supportive of me moving into new treatments. By the end of two years I began to focus on treatments that were “out of the box medically,” and began to get better. It is now six years since I was first diagnosed. I still have set backs now and again but the tests for Connective Tissue Disease are negative, the Lyme Disease is under control, my mind is clear and my memory is so much better. Well, Amen!
In John 12:24, Jesus speaks about life coming out of death. He says that if a seed falls into the ground, and dies, that it will produce much fruit. One of the major outcomes of “the crucible” in my life is a greater ability to surrender my rights, my desires to the One who loves me best. I can give up what I want and enter into rest through that surrender. I believe that nothing can enter my life without His permission, that “bad” things come through the hand of a “good” God. I have found that my personal resources, my coping mechanisms are inadequate to handle life when things go wrong, but when I choose to live out of His abundance, I find life, His Life. I find it easier to see things from the perspective of eternity rather than the perspective of time. And He has given me something I enjoy doing: this website and blog! I will yet see fruit coming out of the crucible of Lyme Disease. Well, Amen.
Jane Corwin Reeves