I have thought for a long time about writing my Lyme story, but something
kept holding me back. I thought for certain the first major attack was over
and that surely I would stay well. Unfortunately that's not how it
happened. Hopefully by all of us sharing our stories, someone who is
searching for answers will find them like we (the Lymies) did, and take
heart that they are not alone.
I don't have dizzy spells, yet. I can still drive but most days don't want to go out of the house. Usually I'm in too much pain or feel too depressed or tired to do much of anything. I wasn't able to do anything in my garden last year and allowed the weeds to take over. Of course, I got nothing out of it.
I had the "bull's eye" rash they say is the first initial symptom of the disease, but ignored it. When the rash appeared about a week after the "bulls eye" disappeared I went to see my doctor who misdiagnosed it and treated me for ringworm. He insisted it itched even after I told him it did not. Of course, the prescribed treatment didn't work.
The rash only got worse until it finally went away on its' own. I was covered all over with the exceptions of my head, hands and feet. I felt like a leper!
A couple of years later I developed "Bell's Palsy." Again it was misdiagnosed. Nothing was done. Some of the muscles in my face never came back. A couple of years after that I started to have severe pain. I suffered from irritability, loss of attention span and suffered from the inability to complete sentences.
I also found my emotions going from one extreme to another. I was climbing the walls.
I found a different doctor and he took a Lyme Titer test almost as a lark. We were both surprised. He immediately had em start the IV treatments. At first, I got worse. About 3/4 of the way through the treatment I finally started to feel better, but the pain never stopped.
It was too late. I had had it for so long, permanent damage had been done. Since then it has only gotten worse. I have had severe visual problems and everytime symptoms reappear in my brain I lose more memory. I wonder what kind of a vegetable I will be 10 years from now.
I have suffered from migraine headaches that will last as long as two months at a time and had to leave work because of them.
I have a sensitivity to noise and have resorted to stuffing cotton in my ears to do dishes.
I have numbness along the outside of my left hand, along the pinkie and numbness on the outside of both my knees. It is difficult for the doctor to get a reflex response in the knees. This indicates nerve damage.
My doctor told me my loss of insight was also a symptom of MS. As I'm sure you realize by now, Lyme disease mimics many other diseases. I was also told the joint pain mimics RA and I have also been diagnosed with fibromyalgia.
I get some OK days but they are few and far between and getting less so. I used to enjoy doing crafts but can no longer due to the pain in my hands. Housework is very difficult to do. Last summer I hired a housekeeper. I felt so guilty that I couldn't do it on my own. Now, I can't afford a housekeeper and my house looks it. Being a perfectionist with a messy house is like living in a nightmare.
At times, I find nothing on TV interests me. That's usually a red flag for me to go back to the doctors for more antibiotics, for which I will take for two to three months at a time. It will be back into my brain again.
My husband and son are living in denial of my illness. They still expect me to do all the things I used to do when I was well.
My husband will occasionally cook a meal, when I can't, but I think it's only because he knows if he doesn't he won't eat.
I talked to my doctor about disability and he was more than willing to fill out the forms for me. When he told me he could do nothing more to "cure" me of this illness, I cried for a week. He then started giving me medication for the pain.
He is very understanding and sympathetic of what I am going through and is now changing my medication because the other pain killer no longer works for me. I know I can depend on him to help me in whatever way he can.
Lyme disease has destroyed my life.
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