I just found this website/board and I am in desperate need of some opinions and help with a dx. I am seeing a bunch of doctors but no one can pinpoint what exactly is going on. This will be long but please read and bare with me. Jan 24 I woke up and couldn't move. DH helped me out of bed and him touching my body felt like i was covered in blisters and was extremely painful so much that i fell to the floor. He helped me up as i was beyond weak and could barely move any part of my body and rushed me to the ER. there my b/p dropped to 60/30 and i was in and out of consciousness. My CPK (heart muscle levels) were 60,000 instead of the normal 200 which meant my muscles were deteriorating at a rapid pace. i was put on abx, o2, prednisone, IV fluids and pain meds. They did a million tests including CT and MRI of my head (for the abnormal weakness/partial paralysis) and NO MS was seen, an MRI of my thigh to look for lesions (negative), pulmonary testing for embolisms (normal/negative), and after a bunch of blood tests (all normal) and 7 days they felt i had rhabdomyolysis (muscle deterioration) and d/c me. When i was d/c i was partially paralyzed and weak in my legs, arms, had gained 40 lbs from all the fluid, had pneumonia from all the fluid, and was very fatigued. The doctors hoped this was just a fluke thing. Over the next 4-5 weeks my fatigue got better and i started to feel more like myself, just weaker than i was before. 10 wks later on April 7 the EXACT same thing happened! I was fine going to sleep and woke up and this time it was much worse. I called my DH and he rushed home to take me to the ER. Upon arrival again my B/p dropped and i was unconscious. I dont remember much about this stay. They again hooked me up to abx, o2, fluid, pain meds and started tests. They repeated the same tests as before and nothing had changed. I continued to worsen this time as it affected my brain too (i couldnt as much as articulate a sentence) and on night 2 i was admitted to the ICU with a central arterial line into my heart placed as well as an arterial line in my neck to monitor my b/p internally (which blew and they placed in my left arm). I was here 18 hrs and then taken back to the floor. I was pretty out of it still and ran in and out of consciousness. They did a muscle biopsy on my right thigh (which im still healing from) which was neg. Again everything looked "normal" I was d/c on day 7 and again it took 4-5 weeks to fully start to recover. Now i feel ok but im nervous every night that the next day this will happen. They told DH both times i wouldnt make it out of the hospital. Im afraid a 3rd episode will kill me. Anyone have anything like this? Lyme disease was suggested and i go today for the bloodwork but other than that there are NO LEADS by any dr i am seeing. Im hoping by some small chance of fate someone will read this and can relate.