In the summer of 1976 (I was 30yrs. old), I had a weird looking rash on my back that didn’t bother me, so I disregarded it. I had blurred vision shortly after that, then numbness of the thigh (which since has spread over my entire body), twitching of muscles all over and on the left side of my face, impaired balance, extreme fatigue, left knee pain, other joint pains which would come and go, inner feelings of dread (this is hard to explain), paranoia, scalp feeling numb, sensitivity to touch (the bed sheet resting lightly on my toe would make the toe ache, like a toothache), dizziness, very foggy headed, and couldn’t think clearly.
There were also other symptoms, i.e. couldn’t stand noise or even someone having a conversation, I wanted to run away from the noise. This all happened over a period of 2 years or so.
I went to countless doctors with these symptoms and I’m sure many of you know their answers. “You’re stressed out,” “You’re bored,” “You need a shrink.” I made a mistake of using the word "cope" once, as in coping with pain -- boy!! I erased that word from my vocabulary.
In 1981, I went to a neurologist -- head of Brooklyn Hospital. He took a spinal tap -- thought it was M.S. - negative. My spinal “initial pressure” was 270mm. Anything over 200 is a flag for something being wrong. I also had a CAT scan at that time...normal. Everything “normal.” Why do I feel like this???
I started doing my own research at the library and diagnosed myself as having syphilis. The spirochete and symptoms are very much alike. I returned to the neuro doc and made him give me a second spinal tap to check for it as it also “hides.” He thought I was completely bonko” by this time. But, he did it...negative. Back to square one. His discharge paper at that time Feb. 1984 stated: Diagnosis: Possible demyelinating disease of the central or peripheral nervous system. He told me face to face that he thought I had “something” but he didn’t know what it was. He was the only doctor that told the truth.
In 1985, we moved to Long Island and I just continued to suffer. Reading a local paper one day, I read the symptoms of Lyme disease and was sure this is it!!! I went to 8 different doctors and each time I tested negative. In 1990 I went to Stony Brook Hospital to see the so-called “specialists in Lyme.” Three “pros” stood there and told my husband & I that “Maybe I should get a job.” I cried and my husband took me by the hand and giving them all a “looks can kill“ look, led me out of there. Prior to our move I quit my job.
I was bouncing around the train station and was unable to concentrate. I dealt with a lot of money (stock market) and although I didn’t make mistakes, I was not sure of what I was doing anymore. I left there in 1984 making $35,000.00 a year. If I didn’t have Lyme I would really be in the money by now. I could not file for SS disability; I had no diagnosis. It took me 13 months and much fighting to finally get SS. A little advice: keep trying, and lastly, retain a lawyer; you’ll eventually win.
Because of the extreme dizziness, I went to another Neuro doctor. I had an E.E.G., E.N.G.(this was a horrid test where they stick hoses in your ears and fill them with water - you feel like you’re on the round-up ride). I also had an M.R.I. of the brain and neck; normal, except for possible vestibular nerve damage in the ear. He gave me Antivert which raced my heart so bad, I threw them out after I realized they did nothing for the dizziness anyway.
In March 1994, I saw an article in Newsday, about a woman who was suing her insurance company for non-payment of I.V. therapy for Lyme. It mentioned her symptoms and I thought ..This is it.. again!!! The doctor’s name was in the ad and I made an appointment to see him. He took lots of blood and had 4 different Lyme tests sent to different labs. All came back..positive. I cried the whole day; I was going to get better, finally. My husband of 33 years, cried too. He knows me and I am not a complainer.
I was put on I.V. for 6 months, using Rocephin, Claforan, Primaxin and Doxyclicline; in that order. Once again the old heart was racing to 114, just sitting there with the I.V. flowing in. After many calls from me the doc removed the PICC line and said I'd had enough. That was the end of October ‘94. I have since been ill. Being that I’ve had this dreaded disease for 22 years now it has taken hold of my nervous system, brain and body.
Some doctor says that Malaria is a cure. I can see my obituary now:
Sprague, Patricia, 52 years young of malaria after a long bout of Lyme Disease. Let him get malaria -- 108* fever or higher is deadly to the germ, yes, but to the person as well.
Second opinion time. Back to the “specialists” at Stony Brook. O.K. I thought, they must know more now, then they did when I was there before. I brought copies of all my records, Lyme results and everything I had. “She” the “specialist” looked at them and said, “I don’t think you had Lyme,” looked again and said “You may have had it but don’t anymore” (Because of the long term I.V.). Stony Brook does not believe in it. When I asked her why I felt worse, she said .."It’s like bumping your arm on a door and you still have pain from it afterward." She looked at the results again and said that I never had Lyme. I asked her what did she think I had... answer...”I don’t know.” Some specialist.
I truly believe that I have chronic Lyme and will never be completely well. I do get some O.K. days, which I make the most of. I no longer can drive, because of the dizziness -- that’s what I miss most. I do all sorts of crafts, and love to cook and keep myself busy. I have nervous energy and can go all day long. Some of you get tired and have that fatigue, which has left me. But, I feel wired.. most of the time, not a good feeling.
I have written letters to many government officials and to our own Govenor Pataki (he also has Lyme). We have to keep on bugging them so that they will recognize Lyme as the fastest spreading disease in the country. AIDS is #2 as far as the rapid spread in 1998. They just found a new drug to help Aids, which is a virus and harder to control. Why can’t they find something for our bacteria? They do not fully understand what Lyme can do to a person and their families. Please write to the Govenor of your state telling how Lyme has affected you. Maybe, if it gets more and more publicity they will appropriate more funds for research and a possible cure in our lifetime. Does our government want a generation of disabled people due to Lyme?
Although Lyme is seldom a fatal disease, I have and I’m sure you have, been walking around "dead." I want some quality years not quantity!
We KNOW we are not "nuts" and we are certainly NOT alone.
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God Bless you all.
Pat
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