Posted 9/11/2014 1:08 PM (GMT -7)
New member so sorry its so long. Wondering if anyone else had similar starting symptoms or lesion's.
Four months ago out of the blue I had chest pain and a vasovagal episode that sent me to the hospital (both new for me). Released and felt good, but soon found resting chest pain in my future. All tests came back great (blood, EKG, Echo, nuclear treadmill stress test), but a odd fogginess and unexplained anxiety added itself to the picture. Soon: insomnia, heart palpitations, adrenal type rushes/racing heart, odd fatigue, weakness. I went from being able to run 15 minutes on the treadmill for their test to barely being able to walk around the yard without getting out of breath and weak (within 1-2 months).
Eventually the fatigue and weakness became so pronounced, my limbs always feel tired and heavy even after sleep and I cant do much right now. I have had off and on eye strain, head pressure, occasional itching hot skin, tremors, migrating joint pain (fingers and toes), and dizziness. I had NONE of these symptoms prior to the first chest pain and no medical problems my whole life (so far I was lucky I guess).
Tests for RA and Lyme came back negative through Quest labs about half way through. Within the same month I had another Quest labs western blot come back ALL negative in every band for both IGG and IGM, but I chose to have a third test drawn the same week through IGENEX (western blot). The Igenex IGM bands came back positive for 31, 39, 41, and 83-93 (IND for 23-25 & 34). The kicker was at the same time I had a head MRI come back showing a bunch of white matter lesions which were non specific but could be due to such things as MS, Vasculitis, Lyme, or other etiologies, etc. That's when Dr's started taking my symptoms seriously. A follow up Lumbar came back negative for Lyme by PCR and negative for bands for MS (still some tests to go though for MS).
I did find a LLMD in my area suggested from ILADS and after over a month so far of oral (Doxy 400mg), I continue to decline. I have started the second month using Doxy and Zithromax, waiting to start a week of Flagyl, but so far feeling a steady decline (not feeling any herx I believe). I had an incident where my knees got weak and ended up going to the hospital this week where my Neurologist (referred from the MRI) gave me cortisone steroids for one day which had no effect on me. I'm now stuck between being treated for LYME by the LLMD and my other Dr's who think Steroids is the better treatment for what sounds like some undiagnosed autoimmune disease. I was also told that my positive Igenex test could be from cross reactivity by the NON LLMD. More MRI's, and a Lyme test by the University of Michigan pending.. I'm particularly concerned about the unknown lesions and if any other confirmed Lyme cases have them. Any thoughts?
IGM Igenex Positive
23-25 kda: IND, 31 kda: +, 34 kda: IND, 39 kda: +, 41 kda: +, 83-93 kda +