Posted 3/2/2018 9:17 AM (GMT -6)
Longish story started last september with walking wobbles, slurred speech, face droop, tremors, and trip to the emergency room. Of course thought it was a stroke, but after three MRI's, CT Scans, more bloodwork than blood, standard lyme test (neg), heart monitor for a month, there is no answers and only getting worse, brain fog, bad memory are new. By ruling out everything you get to the point of a diagnosis for MSA-C or SCA-? to be determined, both are fatal, non curable/treatable, horrible end games.
I know all my symptoms could be lyme (and some symptoms of msa-c i dont have), but i had a negative test, and doing research i saw how many false negatives there are, so i looked up a lyme specialist in bridgeport ct, took a test he sent to igenex in cal, and guess what, i am positive for lyme on igenex, but not cdc. +23, +31, I41, not strong but positive, i got those results the same day i was to get my nero diagnosis.....This is great news right?
Then i do research, and see igenex tests to make more people positive, could lead to more money for treatments, etc. etc. and now I feel bamboozled. Please tell me some stories and give me hope that you were treated based on igenex tests and its real, its my only real hope.
I go to see the lyme guy tomorrow, and want to have a positive not cautious attitude, but the internet has me off track. i'm ready to take iv treatments for a month or more, and not sure if insurance will pay, but at this point, its the only treatment option i have.