omgbbq said...
Back in the early 90s, I found a bump behind my ear. At the time, I thought it was a bump resulting from biting my nails (long story) and so, in my 6-7 year old shame, I didn't tell my mother about it. Some time later I started to get sick, suffering muscle weakness, fevers, and other symptoms. I was so weak I couldn't wash my own hair, so my mother was helping me in the shower when she found the bump behind my ear. She pulled my hair aside and got good lighting on it, then promptly freaked out - there was a large tick engorged with blood attached to my head behind my ear. She removed it with tweezers, making sure to get the head, popped it in a baby food jar, and rushed me to my pediatrician. He diagnosed me with Lyme on the spot, sent the tick off for testing (don't know what the result was), and prescribed me antibiotics (doxy? maybe? I'm allergic to penicillins and have since had a severe anaphylactic response to doxy).
Much of the next week is pretty much a big blur in my head. I know that I was basically bed-ridden for several days because my knees swelled up to the size of grapefruits (which on my skinny frame was a big deal) and I had to be carried around the house. I know that one day I was thirsty and my mom had stepped away, so I used my great big dog as a crutch/walker to help me get to the kitchen to get some water, and by the time my mom found me I was curled up on the kitchen floor clutching my water cup crying in pain as that good dog curled around me protectively. It was just overall not a good scene.
Cut to 30 years later and I'm suffering from a lot of scattered neurological symptoms, generalized pain, migraines, occasional drop-foot, vertigo, Bipolar Disorder, shooting tingling/pain in my arms occasionally, and so far my neurologist has ruled out probably half a dozen diagnoses over the last year. In the past five years I've had a false positive screen for syphilis, which was weird, and I've been tested for Lyme, repeatedly, but I've been doing some reading today and some of the current tests actually look for antibodies, which I likely don't have 30 years after the fact? It's so helpful I could absolutely scream. I have some questions.
I was referred here to try and find an LLMD in my area. ELISA testing is negative and therefore none of my current doctors will look further.
Am I just completely alone/blowing this out of proportion? I'm freaked the **** out now :-(
Welcome to our community!
The ELISA test isn't a good test. If you do end up retesting - do the Western Blot IgM and IgG - still lots of false negatives...but it's better than the ELISA.
Also, you want to test with a lab that specializes in tick-borne disease testing: Igenex (california) is one of the best ones.
Looks like Dahlias has an option in Fairfax for you. Click on her screen name to get her email address.