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Lynn's Story

About 15 years ago, I started to feel strange; my hands and feet were always cold, doctors said it was Reynaud's Syndrome. My moods would change, I would get lots of headaches and sore throats and fevers. Then I felt sick one day and said to my husband "I feel like I am going somehwere," and within a few seconds, I had fallen to the ground unconscious. I guess I did go somewhere, but I can't remember where I went, and if I had a good time or not.

Anyway, a few minutes later I came too and the emergency technician was taking my blood pressure, which was very low. The EMT's wanted to take me to the Emergency Room but I would not go, and fought them. I knew they would not have a clue as to what to do with me and if I was going to die, it was going to be in my own bed. Well, I didn't die, but I was sick with a "viral" like illness for three weeks and then got better and went about my business. I of course had started going to doctors, but none of them had a clue.

One had the decency to say I know there is something wrong with you, but I don't think it is in the realm of medical science right now. I started going from doctor to doctor and kept having viral type illnesses, with remissions and sick periods, for many years. As the years went on, more and more symptoms came on me. I started to get strange body pain, stomach aches, worse headaches, sleep problems, and strange depression and brain swelling. About l0 years ago I was diagnosed with chronic fatigue syndrome. I did all the treatments for chronic fatigue syndrome that were available and never got one bit better.

This summer, I was on vacation and came back real sick with a flu and the Lyme rash. I had a urine PCR done and it showed high titers to Lyme, and then I had it done a month later and the titers were still high. The doctor told me that I probably had Lyme for a long time. Surprise, surprise! I didn't know whether to be happy because I finally had an answer, or kill someone because of all the years of suffering I'd gone through having been undiagnosed and untreated. I didn't stay with that doctor long. I moved on to a Lyme specialist, who is treating me now, and says that I most likely never had chronic fatigue syndrome, and it was always Lyme. He is hopeful that I am going to make some kind of recovery after several months of IV antibiotics. I hope he is right.

How can we live in a country that has a Lyme epidemic going on, yet no one knows what to look for, and very few know how to treat long term Lyme? Why are doctors so afraid of saying you have Lyme disease even if your tests are negative? Why can't they just treat your symptoms? I never tested positive to any blood tests and probably never will. I will be happy to have a life again with minor symptoms as compared to what I have lived with in the past.

I will never be the same physically or emotionally. Having an illness like this has turned me against doctors to the point of paranoia. I don't trust anyone. It has also made me see that when you are sick you are in it alone except for your family, close friends and other sufferers. No one else really cares and they are glad it is not them. I hope there is a good ending for all of us suffering with Lyme. We have had enough and need to go on with the rest of our lives, and know we can live them in relative health and peace.


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