I was diagnosed with lyme disease when I was 12. I woke up one morning and couldn't walk, my hip ached, my head pounded, and I was always tired. The doctor tested me, just in case, for lyme and the results were positive. I was treated with 3 weeks of antibiotics and when the pain didn't go away, I repeated the treatment, the pain didn't go away and they decided that the lyme disease wasn't the cause of my symptoms, just a red herring. The pain got worse and I started having similar symptoms in my big toe and lower back, which led them to diagnose me with rheumatoid arthritis, then they said it was fibromyalgia. In the end, I started taking pain pills and stimulants for the fatigue.
For the next 10 years, I had bouts of the same pain, nothing to bad. I should also note that during this time I was diagnosed with manic depression, then just regular depression, add..etc.etc. I also had neuropsych testing that showed I had a really weak grip and poor motor skills, and that the difference between my verbal and spatial reasoning skills was so great that I needed to see a neurologist. The neurologist said thats who i was, i was born that way, and there was nothing wrong. Also, I had bouts of extreme weakness, but nothing so debilatating.
Then, a few months ago, my symptoms flared up again with a vengeance, I was bed-ridden, so tired I called home and asked my parents to come to NY and take me to the doctor. I also started having visual hallucinations, not full blown, but blotches of light, black specs. The area AROUND my heart aches and my stomach is so messed up that the pain often delibitates me. I ended up going back home and going to see my phsyical therapist, who remembered that my hip pain etc. mimicked when i had lyme disease. My regular Dr. didn't think so, but, because my mom was so pushy, she agreed to do the labs.
The labs came back positive. I was so relieved, I thought finally an end to all of this may be in sight. But my Dr., who is great and admitted she wasn't sure what to make of the results, contacted several other physicians, and they concluded that it was a false positive. WHAT? how does this make any sense. I have the symptoms, my test came back positive. Now I have to wait two weeks, and get my blood tested again just to make sure and then wait two weeks to get the results back. And if they come back positive again, I'll be given oral antibiotics again for 3 weeks. If it didn't work the first time, why would it work 10 years later.
I get not wanting to give me antibiotics if i don't really neeed them, but now I have to suffer another month until they even will consider the possibility that I still have Lyme disease.
Maybe they are right and I don't, I'm not a doctor. But i know I'm sick and I'm just so confused!!!! please help