The first time I knew something was really wrong.
I woke up a few years ago, and I couldn’t move any part of my body. I was frozen in my bed. I went to the doctor and was told I had anxiety, and sent home with some xanax.
Then the burning started first in my legs, then hands, and last the face. I went back to the doctor; my primary care was on medical leave so I saw her partner. She took down what I said and had me see a neurologist. The first time I saw the neurologist his demeanor was disturbing to me. I felt like I was wasting his time. He ran some test, and told me I had anxiety.
Then the exhaustion set in. I was so tired I felt like I couldn’t sleep enough. I had slept like 16 hours straight, and when I woke up I was really sick. I was throwing up, and my legs were very wobbly. I went back to my primary doctor at first she thought I had a virus, and then when I couldn’t walk she ran some more test. I showed vitamin b and vitamin D were very low. She ran a west Niles virus, and a Lyme test. It came back negative for west Niles and a positive 23 brand for Lyme. I was started on two weeks of doxy. I did not get better, soon the seizures started. I did three more months of doxy. I was losing my thought process, I couldn’t spell my name. I was having nerouolgical issues. I would fall, and the pain in my legs, are arms became horrible.
I had my family all tested for Lyme, My son, and husband both had one positive band, my daughter was negative. They both did two weeks of medication and seemed to be okay. I began to get worse; I was missing a few days of work a week. The seizures were happening daily, and afterwards I couldn’t walk. It got so bad I have to use a cane off and on.
At this time, my primary care doctor called me at home, and told me she could not help me any longer. She could not risk losing her practice, she knew I had Lyme, and that should see someone in Wisconsin. I just cried I did not know what to do. I found an infectious disease doctor who put me in the hospital for three days, they ran lots of tests. I was told I did not have Lyme anymore I cured myself , and that I had ebstein barr, and herpes 1 & 2. They brought in a couple of specialist one did not even watch me try to cross the room, and he wrote on his report I needed mental help. His reason because I thought I had Lyme, and I did not. Finally the Infectious disease doctor sent me to a big hospital for more tests. The doctors said I had high inflammation in my body, and told me to follow up with my primary doctor.
My health just continued to go downhill, I could no longer take my son to the park, or drive my car. At times I feel like I am going to lose my mind. I was working full-time and going to class three to four nights a week. Now I can barely make it out of bed. I am working part-time, but due to having another seizure at work today, I am thinking to try short-term disability. The seizures get so bad, that at times I fall, and I have hit the floor more times than I can remember.
I did see a LLMD; he was very smart, and very expensive. Not just that he would prefer I buy all the medication from him. At this time I can’t afford it. So I continue to look for a doctor to help me. In the meantime I am doing as much research as I can on Lyme disease. I never had a bull eye rash, and the only thing I remember getting bit by is a mosquito. The doctors here will not treat Lyme disease; I was told I may have MS, Nerve damage, anxiety, but not Lyme.
I am trying to treat myself, I have bad days, and really bad days. I will not give up, I have two kids and a husband that love me, and support me. I have sisters that even though they don’t understand what Lyme does to me, they support me. I will continue to fight, even if I have to use a cane. I won’t give up.
36, in Illinois.