How is it that a child can sense something is not quite right when she seems to be the picture of health to all who observe? It was the little things, you know? Frequent stiff necks – one so severe I had to wear a neck brace for weeks. Cluster headaches that were diagnosed as allergy-induced sinus headaches. Fatigued and feeling so cold all the time that some thought I must be anemic, but my iron count couldn’t have been more perfect.
I can’t remember a time in my life when I didn’t bruise easily. And my eyes would get tired easily; the more I read the more they hurt and the blurrier my vision would become. But it wasn’t a vision problem. An eye doctor finally diagnosed me with weak eye muscles and gave me a prescription strong enough to be considered reading glasses by today’s standards.
My muscles would get sore as naturally as any other child’s when doing things the body wasn’t used to, but it always took me days longer to overcome the soreness than it did other children. My comprehension level was low. Explain something while showing me and I could get it. Expect me to read or follow along while reading and it was gibberish.
There were times when I’d get the flu and nobody else would. But the strangest thing was every now and then I would wake in the middle of the night with this uncontrollable need to continually swallow. I would inevitably vomit. Though sometimes I had night sweats, there was no fever and no extended illness. Usually after I vomited I was fine by morning.
After a waterslide accident at the age of twelve in which I injured my spine, I began to have chronic pain down my right side. My sacrum was - and still is - constantly swollen, and I developed Irritable Bowel Syndrome. I always had problems with the inability to gain weight, but this made it worse.
I don’t know what the norm was, but I do know I developed later than most girls my age. When it did happen, mild hot flashes accompanied it. After mentioning it to a nurse friend, I learned that this was not normal for a teenage girl.
Doctors didn’t know what to do with me, so they ignored my symptoms for the most part. I was still able to function like normal children, so why worry? Only they couldn’t comprehend the daily struggles for me to keep up and act like a normal child.
While attending college in Texas, I was quarantined to sick bay for well over a month when I came down with some sort of “flu.” I had a high fever and the disease poured uncontrollably out both ends at the same time. Why I wasn’t sent to the ER puzzles me to this day. I had found lone star ticks crawling on me and I’m sure I was infected at that point with Ehrlichiosis and no telling what other bacteria, compounding my already unknown chronic Lyme disease.
It wasn’t until years later after I was married and had my third son that I realized just how terribly sick I was. I was bed-ridden for about 75% of my life for the next couple years. A chiropractor diagnosed me with Fibromyalgia and my MD was quick to agree. I told my husband at one point that I felt as if something had invaded every cell of my body and would explode me into a gazillion pieces - only it would rather torture me than let me die. Little did I know how close I was to the truth!
My chiropractor and my MD treated me for four+ years and got me functioning about 80% of normal. I lived this way for a few years until I started experiencing chronic migraines and anorexic-type weight loss again.
In God’s providence, I became pregnant with my fourth son and started regaining a portion of my strength. I honestly believe I would have died if God had not given me my fourth son when he did. However, within the first three months after delivering him, I was losing ground fast. It was then that my doctor diagnosed me with chronic Lyme disease.
I’ve been undergoing chronic Lyme treatment for five years now. My lovely co-infectors being the infamous Bartonella, Babesia, and Ehrlichiosis have made the ride quite the challenge. I am currently being treated for the Bartonella and my doctor is hoping that this will be the end of it. I pray it is so.
I haven’t covered the emotional and psychological effects this disease has had on me or on other patients. I’m not sure I have time and energy to go into it all. Suffice it to say that my family has been to hell and back many times due to the stress and strain, financial burden, and mysteriousness of this illness. Any family who survives this illness does so by the grace of God alone, whether they believe it or not.
Illnesses such as cancer are different in that they can be seen. Lyme is invisible. It’s under the skin and in the nerves. It burrows into your soft tissue causing pain that cannot be detected by anybody other than the one suffering. It is a chameleon, causing the body to attack its own cells in an effort to annihilate the intruder.
And the pain? It is unimaginable! It is chronic. Constant. Unrelenting. It starts at the top of the head and extends to the tips of fingers and toes. I once tried to list all my pain – every type of pain in every location of the body, starting at the top of my head and working my way down. I reached the tops of my shoulders and had to quit because it was too mentally, physically, and emotionally exhausting. I was in tears. You see, we work hard to forget our pain in order to cope with it. We shut it out as best we can. When we stop to think about our pain, we become aware of the intolerable level we suffer. It’s too much. You just cannot begin to imagine the torture if you’ve never experienced it.
Chronic Lyme disease affects the whole person: body, soul, spirit, psyche, and emotions, because there is so little you can do about it. There is no escape! You live a slow, agonizing, torturous life and so many times you want to give up and die. For me, there would be no hope without God. It is he who is my rock and refuge. It is he who keeps me from sinking into the pit of despair. It is Jesus who gives me the ability to put one foot in front of the other and believe that even this kind of life can be worth living.
Having said that, I do have the hope that my treatment is nearing its end. Three more months and my doctor thinks that, though I have no guarantee of a cure, I will be symptom-free. I pray it is so.
If you would like to read more about my life with Lyme disease, I have a blog where I post updates from time to time: http://linnetteslymelife.blogspot.com/. Feel free to visit and leave comments. I always enjoy meeting people and answering questions as I am able. I have an on-line Christian support group for Lymies and their loved ones. You’ll find the link for it on my blog as well as other links at my website. (Click on my name below.)
Please educate yourself! Lyme is no respecter persons. Even President George W. Bush was treated for Lyme disease during his presidency. http://www.washingtonpost.com/wp-dyn/content/article/2007/08/08/AR2007080802268.html
Daryl Hall of the popular ‘80’s group Hall and Oats has his own story of how Lyme disease nearly ended his career. http://vodpod.com/watch/719144-daryl-hall-lyme-disease-interview. And there are others.
My doctor has found that it usually affects whole families since it can be transmitted through bodily fluids. All four of my boys have Congenital Lyme disease which crosses the placenta. It can cause Fibromyalgia, Chronic Fatigue, MS, Parkinson’s, Rheumatoid Arthritis, Alzheimer’s, and many other neurological syndromes. So do your homework and do what you can to learn about and prevent this disease.
If you get a tick bite or even find a tick crawling on you, don’t mess around. There’s protocol to follow once you’ve been bit, including but not limited to how to remove a tick. Do NOT cause any trauma to the tick such as applying alcohol or other chemicals to the tick, and if you pull it out you want to do it slowly so the tick will release on its own and you’re less likely to leave tick parts behind.
The two most helpful sites to start with are: http://www.lymediseaseassociation.org/ and http://www.lymedisease.org/.
Keep in mind that most doctors are still not Lyme literate and may not know how to treat you correctly or for the necessary length of time to eradicate the infection. God bless you and may he see fit to keep you healthy and whole!
Linnette R Mullin, South Carolina