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Kathy's Story

My nightmare began in 1993 when I was diagnosed with Lyme Disease. Approximately 3 wks. after having 2very tiny ticks removed, I developed reddish circular rings behind my knees, the sites of the bites. Subsequently I developed a rash on my torso, which lasted for a few weeks, along with low grade fevers, severe aches and pains, and the most intense fatigue I have ever known.

My physician at the time said he did not want to wait for results of the lyme test, and started me on Tetracycline for 7 days. Some of the symptoms resolved, although the fatigue and headaches did not. Also, my WBC has remained elevated ever since. I later developed horrendous "jolts" in my right leg and foot, as well as a numbness of the skin on my thigh.

I was placed on more oral antibiotics, which seemed to help for awhile, although I had to keep switching from one kind to another. When I started to develop a skin rash from Zithromax, it was decided that I could best benefit from IV rocephin. This was after I had seen a neurologist, and an infectious disease doctor. After a 6wk. course of treatment, I felt fantastic, although over the course of several months my symptoms reappared.

Another trip to the neurologist, and this time a spinal tap to rule out MS was done. The results showed Lyme disease, even though all boodwork l had done was negative. A 4 wk. course of IV rocephin was finally approved by my ins. co. Again, I showed improvement, only to relapse after several months. This time my symptoms included memory loss, difficulty with speech at times, and severe pain in my hands, not to mention dizziness. Treatment with heavy-duty pain medications and antispasmodics helps somewhat, on a limited basis. As an RN, I could no longer function in my work, and was put on temp. disability.

My physican ordered an 8-10 week coure of IV Rocephin. A picc line was put in and treatment started, only to be abruptly stopped by my health ins. which claimed there is no such thing as chronic neurological lyme dis. After threatening my physician and questioning his medical competency, they sent me a list of doctors that they said would properly diagnose and treat me. I made an appointment, confirmed the appointment, and kept the appointment.

I waited in the doctor's waiting room, filled out the necessary forms, was taken into another room where I was weighed and had my vital signs taken. After a short time, I was told the doctor refusedto see me because I never made an appointment. I was told that I would have to make another appt. and that I could not be seen for at least a month. I went home, and decided to try a physician at the second hospital on the list.

I made an appt. and was seen by an infectious disease doctor who sent me to another neurologist, who again required me to have another spinal tap. After having to wait for over a month to have the proceedure scheduled, it was finally done, and I was told to return to the doctor's office in 2 wks. to review the results and plan a course of treatment. That appointment was yesterday.

Instead of results, the receptionist asked me why I did not have the spinal tap done! I told her it was done, and she could check with the doctor, who verified that he himself had done it. After an hour of making many phon calls, I was told that the hospital where the proceedure was done had no records of my ever being there for any proceedure.

The doctor sent me home, stated he did no know what was going on, but he would check into things and get backto me. When I called his office this morning, his receptionist said it was not their fault things were lost, and she would try to look into the matter when she had time. The doctor was unavailable to speak to me. It has now been 4 mo. since I have had antibiotics, and every symptom has returned with a vengence.

I have just started my application for social security disability, and don't know how I am going to be able to afford health insurance after a few more months. I feel like I am getting worse on a daily basis, and am scared to death of what the future holds. At the time of my life when I felt that my children were on their own, and I would be able to work and save for my retirement years, I find that not only am I not able to work, I am getting deeper in debt than ever before.

My husband is trying to be as supportive as possible, but this is taking a toll on my entire famly. I never know from one day to the next how I am going to feel, or even if I will be able to stay awake long enough to do anything. Short of the grave, does this ever stop? Also, what can I do to get the proper care that my attending physician and I agree that I need? Any ideas would be gratefully appreciated.


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