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by Kimberly and James Lewis
Overcoming the Downward Spiral by Kimberly Lewis
You may not even see it, but it can kill you. I never would have thought that a pin head sized tick could change my life so radically but it did.
I was a very active and healthy 28 year old woman the first time I encountered Lyme Disease. Like many, I didn’t even notice the embedded tick until the skin around it swelled and was irritated and because it was so small, I couldn’t even tell what it was.
My husband removed it with tweezers and I applied peroxide. I don’t recall how many days it was later that I noticed a rash in that area but I assumed it was due to an allergic reaction to the bite since I’d been more sensitive to other insect bites in the past. At this time, I’d never heard of Lyme Disease.
The rash grew larger over a period of weeks…expanding about 15 inches and was more oval than round. The center seemed to clear as it grew outwards. The reddest part was the outer edge and it was rough to the touch. It didn’t hurt, though it did itch some. I finally showed it to my mother who went to get her latest edition of some ladies magazine. She showed me an article she’d just read on Lyme Disease and its symptoms and signs.
I was still not alarmed as the article didn’t really make it out like it was that serious of an issue. The doctor informed me that I was the first CDC positive case of Lyme Disease in the State of Georgia that year and gave me a seven-day prescription for doxycycline. I took the antibiotics and went on with my life.
Within three months, I was having episodes of extreme fatigue and joint pain in my knees and hips. That summer, my husband, who is a self-employed home remodeler, had an extensive remodel job that I was helping him with. I remember days where I would go but be so weak and tired that I just laid on the hardwood floor, too weak to do anything else. I would have days of this and then seem fine for a few weeks only to repeat the cycle.
Over the next several years, I developed many different medical conditions: hypothyroidism, IBS, chronic back and leg pain, twitches and jerks, neck pain, muscle spasms, repeated miscarriages, migraines and probably other things I don’t remember that seemed to come and go like phantoms.
In August of 2006, our family moved to Brookfield. We were so happy to be in Missouri once again. That spring we put in a nice garden. In late April I found two embedded ticks.
Knowing about Lyme Disease, I watched for a rash but didn’t get one. What I did develop within a short period of time was very bad lymph node swelling which lasted about six weeks. All over my body, my lymph nodes were swollen and painful. I knew my body was fighting something but wasn’t sure what it was. I took vitamins and tried to support my immune system with "green" drinks and herbs.
By the end of the summer, I had developed crippling arthritis in my hands and feet. It was awful. Doing simple tasks like cooking or even my favorite hobby, crocheting, became impossible. My husband was very concerned. I was only 35 years old! Even though I had given up hope of a doctor being able to help me, I made an appointment with a rheumatologist.
A few weeks before my appointment, I began having episodes where the left side of my face, neck and left arm would go numb and I would have trouble speaking. They didn’t last long but they scared me and my family. When we saw Dr. Jackson, he tested me for MS, Rheumatoid Arthritis, Lupus and a few other conditions.
Several weeks later, we found out the tests were negative for Autoimmune Disorders. It was Lyme Disease! I was shocked and told him that not only had I had Lyme before but that I never got a rash this time. That was the beginning of my re-education concerning Lyme Disease. Fewer than 50% of people with Lyme Disease even get the rash.
I continued to get worse. I started having different kinds of seizures and began falling all the time. The infection caused inflammation in my brain and caused so many different manifestations in my nervous system that it’s difficult to even put it all down in words. I lost muscle coordination and motor skills. I had horrible tremors and twitching. Walking became difficult and then impossible.
The pain itself was sometimes so unbearable that I prayed that God would just allow me to die. I spent nearly six months in a wheelchair. My weight dropped until I was less than 80 pounds. I saw two different Lyme specialists during this time and was on an aggressive antibiotic therapy in conjunction with many natural therapies. I can’t say what exactly helped me to pull out of the downward spiral, I only know that by the end of 2009, I was walking with assistance and then on my own. The seizures finally stopped, the pain gradually lessened and my life began again. Last year, we even put in a garden.
The hardest part to bear is knowing how difficult this was for my husband and children, but I am so thankful for a loving family. It was not easy and having people say that there’s no Lyme Disease in Missouri doesn’t help.
There is Lyme here.
The doctor who diagnosed me in 2007 had diagnosed 30 other cases in Northeast Missouri in 2007 alone. I met a nurse in the emergency room over in Chillicothe whose sister was so ill with Lyme that she could no longer run the support group she started. A lady in the Brookfield emergency room has a father with Lyme and was at Mayo Clinic with nearly the same symptoms that I had.
In the online Lyme community, many of our members have died due to Lyme complications, several of them younger than I am. So many Lyme Disease sufferers never get well. Or, those who do relapse into illness again after several years. I don’t know why I’ve been given this second chance, I only know that I am grateful to God to have it.
If you think you or someone you love might have Lyme Disease please visit:
http://drcharlescrist.com/; http://lymenet.org; http://ilads.org/lyme_disease/about_lyme.; html www.ilads.org.
A Return to the Days of Health by James Lewis
I’m so grateful for the days of health we are now enjoying.
Words will fall short in describing the fullness of the experience, as anyone who has faced a life threatening illness can attest. Though it’s been many months since my wife exhibited manifestations of Lyme, after battling it for 10+ years, I think I am still in a state of hesitant hope, kind of like, "Is it really gone, or is it just laying low for a while?" I am grateful the illness did not take her from me, for as many people have said openly, now that she is shining with life and health once more, "We didn’t think you were going to make it…"
Our encounter with Lyme disease challenged all aspects of our existence, physical, mental, and spiritual. It was complicated, of course, by the "mystery" which surrounds Lyme disease. It destroyed any previous naïve attitudes of "O.K., you’re sick, so we’ll take you to the doctor, and they’ll give you some medicine, and that’s that…"
When a doctor did finally diagnose and issue the standard course of antibiotics to kill the invading bacteria, it was too late for that countermeasure, though we were unaware of that fact for a long time. We thought it was defeated, but the whole time the bacteria was infiltrating and digging in as it were for a siege warfare against my wife’s very life.
She was always an inquisitive soul, and she turned to the Internet to try to find answers to her increasing ailments. I kidded her in the beginning, because I never knew what grievous potential disease/affliction might match the symptoms she was experiencing. (We eventually learned that Lyme is called among other things, "the great imitator" of many supposedly identified and treatable illnesses.) Her energy levels sank lower and lower. She began to be afflicted with intense pain throughout her body, at first sporadically, like violent storms which shook things up then moved on, but gradually the pain would settle in for longer periods. It was awful.
After my wife was re-diagnosed as still having Lyme disease, the specialist responded to my concern to his prescribing pain medications of addictive potential with "You don‘t know what you‘re dealing with, I’ve had patients commit suicide because of the pain…"
It was the absolute worst when the bacteria invaded her brain and nervous system. She had seizures which forcefully threw her to the ground without warning, or made her look as if she was being electrocuted. She lost the ability to walk for at least six months. Her speech became slurred and at times incoherent. I remember one day she began desperately weeping when she came out of a month long period of amnesia like consciousness. It was awful…
I’m so grateful for the days of health we are now enjoying. Words fall short in describing the fullness of the experience…