Priscilla's Story
Hello, my name is Priscilla Horne and I am 58 years old. I live in Las Vegas, Nevada which is not a common place to find your everyday common Lyme carrying tick. But here I am after 3 years with this disease. I probably got the tick after my husband had been to the mountains in California, because several weeks after his return home I found a tick in my neck that I carried around for over a week. The problem is I did not know much about this disease.
I did not even know it was a tick I was carrying around in my neck. I thought is was mole. OK, quit laughing, that is exactly what I thought it was. That is until the thing started dying and I thought my newly formed mole was turning cancerous. Maybe I should not let all you people out there know how truly ignorant I was regarding this disease. But that is exactly why I am sharing my story, so others can learn from my mistake.
That was in October of 1995. By November I'd developed a very weird looking lesion that looked like a small white lump with a red ring around the outside and a black center. My doctor called it a button lesion (If anyone out there knows anything about this kind of lesion, I would like to know more about it). I had no rash at that time. The Dr. diagnosed it as Lyme disease and gave me antibiotics, but not the right kind. During this time I had flu, sinus infection and high fevers. Then my doctor died suddenly of a heart attack and no other doctor believed I had Lyme.
I went to about 12 different doctors. They would treat the various symptoms with drugs but never the right kind of drugs. My own doctor I had gone to for almost two decades asked me to leave his office when I mentioned Lyme. He told me he would treat me for other things if I needed him, but not Lyme. The doctors said I did not have Lyme disease nor did I ever have Lyme disease, and that was before they took a medical history or discussed my symptoms.
During this time I developed joint pain, soft tissue pain including stabbing pain that felt like electrical shocks, numbness in my legs, hands, arms and face, pink eye, Bell's palsy, blurred vision, eyes that watered constantly, and very heavy drenching sweats, more high fevers (104-105 degrees). I also would break out in ulcer-like sores on my body, arms and legs; some were quite large. I then developed ear infections, sore throats, severe itching, giant hives and a lots of fatigue.
Fatigue all the time, so bad that I called it crashing whenever it would hit me. My body felt like it was being crushed and my joints would lock up on me, and just moving anything in or on my body was very painful. My blood pressure would go from very high to very low all in the same day. I was given medication for the hives and itching and as long as I take it, I don't have problems with the hives, which have been constant since last July. I have had problems with my kidneys and gall bladder. I was referred to specialists in each area. I had all the regular tests done on the kidney and they did not find anything wrong.
The specialist determined, from a clinical diagnosis, that I had passed a kidney stone. Within a day or two of that, I had a severe gall bladder attack that has left me in ongoing pain, from my right shoulder blade down that side and across my lower back. This gets worse when I eat but the pain is there all the time, since last November. I have had a catscan and ultrasound but that only showed everything is in perfect condition, so my doctor released me and so here I am in perfect health(?).
Somehow, I can't help but suspect the Lyme bacteria are having a rip-roaring time in my body. I am still working but not sure how I make it to work each day. I think I am going on pure stubbornness.
Now the good news. I recently found a doctor to treat the Lyme; a very good and highly recommended one. He also happens to believe that my gall bladder needs to be removed (ugh!) so he referred me to a surgeon. My doctor put me on doxycycline and I have had some improvement.
Oh yes, one more thing. Because I could not get a doctor to believe I had Lyme disease, I have not been tested for it. The doctor (a rhuematologist) I go to now has not tested me for it. He said he believes I have Lyme disease and said he will take it one step at a time. First the doxycycline and see how that does. I think I am improving although I did get sicker for a short time, but understand that may have been the "herx." I thought I was going to die as all my symptoms got so severe, that I was out of my head for days with fever, sweats, and joint pain. Anyway that is over and I am improving, for now.
Thank you for reading this and I hope it does someone some good. I know the stories I read on the Lyme Quilt page helped me.
Sincerely,
Priscilla
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