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Revisiting ...
Oct 16, 2015
I'm not sure where to begin but I'll jump in looking for advice, obviously I'm aware that true medical advice cannot be given over a forum... maybe I'm looking more for opinions, or if anyone has dealt with something similar...

I'm 31 years old. Female. From Rhode Island originally. In 2003 I had a sudden severe migraine, had never had one before. It passed after a whole day. Couple days later, had another. At that point went to see my Dr. He did blood work, and urinalysis and came back and told me I was positive for Lyme Disease. I was sent for an MRI, and was told that judging by brain lesions, I'd had the disease for a very long time (he said 10+ years) and it had been dormant or no one caught subtle symptoms, etc. Suddenly symptoms came on like gang busters and I was VERY ill. At one point we were contemplating a wheelchair. I was treated with a round of antibiotics. Tested negative. Few weeks went by, symptoms returned. Tested again. Tested positive. Treated again, different antibiotics. Tested negative. Symptoms returned. Tested positive. Treated again. and so on and so forth for about 5 rounds until I was taking 3 antibiotics orally at the same time. Tested negative. Was told I also tested positive for Bartonella (by a Lyme Literate Dr.), nothing was done about that. I was tested a couple more times and kept testing negative. This was by blood test. I was also sent to a Cardiologist and put through testing and ultrasounds. Everything was normal there. Time passed and I accepted that I would have some lingering symptoms (migraines, joint pain, etc.). They stopped testing me. I moved out of state and sort of put it behind me.
Now it's been 10 years since treatment and I've got some things cropping up and my current Dr. just sort of brushed it off when I told her my history (she's great with everything else but doesn't seem to know her bum from her elbow about LD). Most notable is the headaches returning, fatigue, and facial twitching, prolonged spacing out. I recently saw a NeuroPsychologist for applying for SSI (for mental reasons) and he witnessed two episodes of me "spacing out" in person and told me that I should be checked for partial seizures. I brought this up to my own Dr. and she basically said "Well... we could send you for an EEG but it would take a couple days, you'd have to go to OSU, and most times the EEG doesn't even show partial seizures but lets revisit that next time you come in..." that's in 3 months from now. These "things" are happening more and more frequently in the last week or so. One night last week I had about 20 of these incidents where I'd suddenly space out for 8-10 seconds, like totally unblinking, glazed over, dead stare and then snap to again. Some time later that same evening I started having eye, mouth, and muscle twitching around my cheekbone area, all on the left side of my face.
Tonight I'm having the same thing. Not as many episodes of spacing out (which until now I'd thought was linked to mental issues, PTSD, etc.) but for about 6 hours my left eye has been twitching, occasionally the left side of my mouth/lip, and the cheekbone area again. Having a hard time staying focused and also having some odd "twitches" elsewhere, like suddenly my neck might jerk, or my left knee, etc. Obviously something is going on here and I sort of put two and two together that I've been having these episodes from the time I was a little kid (but nothing like this now), and the first Dr. did say I'd had the disease in my system for a very long time. I was diagnosed with LD at 18 years old, it stands to reason that these could have been LD related and were one of the only symptoms presenting from early onset.
I haven't done a whole lot of research on this in years and just poking around a little tonight I'm seeing all sorts of new things that weren't talked about back then, like strains, etc. I also had no idea what Bartonella was, I wasn't told and I was told I was positive for that the last time I saw my LLD 2004 when he deemed me "cured". So nothing was done about that. Not sure if that's important or not.

I'm concerned I might be positive again but I kinda know that I need to find a new Dr. I just don't know where to begin. Is it still true that blood tests aren't great and urine tests are the way to go?

Has anyone here had issues like this? Where there was a large gap of time between testing and treatment?

I'm tempted to hit the ER with these episodes of spacing out and facial twitching. I almost feel like I'd get taken a little more seriously...

Would love to hear from anyone. Sorry for rambling.





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