And what symptoms did you have with exception of bulls eye rash and were you ever diagnosed incorrectly because you did not have the rash? I have had an MRI with a lot wrong (like white matter changes ect) but no lesions and report said "suspected MS but no active enhancement at this time) If anyone has a story that could help me know more I would greatly appreciate it. FYI I have also been tested other mimicing diseases such Lupus, HIV, hepatitis a, b & c, syphillis, and they were all negative. Only thing to confirm M.S. would be lumbar puncture to rule other diseases out... I have no insurance so am self pay with my neurologist... any info would be greatly appreciated! Thank you!
I don't know if this will help you at all !! But I was tested for Lyme years ago.
It was very expensive (even with good insurance!) I did not have the bullseye rash either, yet I got tested nonetheless. I saw an Infectious Disease Specialist who was just positive it was Lyme. He took so many vials of blood I thought the dude was embalming me! They must test your blood three separate times. Were you tested 3 times?
I'm so sorry you are having such a difficult time being diagnosed. What, in your secret heart, do you think you have? What do your instincts tell you?
It turned out I did NOT have Lyme by the way.
MS can be detected through an MRI or so I was told by a neuro, but that was ten years ago, so I could be wrong, I am frequently wrong!
Best wishes Christie!!
Well you had me at "expensive even with good insurance" lol. Oh my gosh why so much blood was taken? LOL. I don't know whats wrong with me. All I do know it is neurological and affects my brain and body, I have symptoms of autoimmune disease and like I said on MRI said suspect MS but when my RPR kept coming back reactive but confirmatory always negative I thought in my heart of hearts it was lupus. With the achey muscles and all. But that test for the antibodies was negative. So I don't know what to think. I wish my doctor put as much time and effort and concern as I do. LOL. Yeah right! lol. Thank you for your input though. :)
I tested positive for Lyme disease in 2005. I was not told nor treated. I went thru the wringer and developed severe joint pain, back & neck pain, hip pain, and a severe case of uvetis/iritis (inflammation of the iris due to abnormal cells in the eye), severe headaches and a general sense of being unwell. I ended up in a methadone clinic for pain control. I did not like this but could not find a Dr. to help me with the chronic pain. Lo & behold the Dr. at that clinic knew a lot about Lyme disease and said I can almost guarantee that you have untreated Lyme disease. He ordered the kit from Igenix labs who specialize in diagnostic test for Lyme. I came back positive including meeting the CDC standards which are high. He found me a Lyme specialist 200 miles from where I live. I got treatment from him but have lingering affect because I went untreated for so long , About 6 yrs.
Because you are self pay I would look into a community based health service that charges you a portion (sliding scale fee) of what u pay now. Also I never had any rash, think I was bit in the scalp & did not discover the tick until he gorged on my blood for a couple of days. Whay would it hurt to have a Lyme test?? Also Igenix labs are very good with diagnostic blood tests I highly recommend them. Good Luck, Jan
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