I had an extremely scary episode earlier this week and wanted to see if anyone had experienced a similar situation or had any thoughts. It was so bad that the only three things I can imagine it being were a herx, a seizure or a stroke.
For context, I've been on abx treatment for seven months for chronic neuro-lyme but have been feeling OK up until this episode. I'm currently on Ceftin (as of two weeks ago) and Mepron (for the last two months).
While laying in bed, a very sudden feeling of intense electricity came over my entire body. From there, I started to feel numb/paralyzed and flushed with heat. I started bracing myself for what was happening and felt like I couldn't move or speak or it would agitate whatever was happening beyond what I could tolerate.
As it got worse, I felt like I had to consciously breathe for myself or I would stop breathing. I felt paralyzed (the way I explained it to my wife was that if our apartment caught on fire at that moment she would have had to carry me out because I wasn't going to be able to move). One side of my mouth was dropping slightly. My nerves seemed like they were firing at 10x their normal rate making my muscles twitch and jerk constantly. My speech was slurred at times. It felt like I was slipping in and out of consciousness but never did really lose consciousness. I was fully aware of what was happening but my thinking was extremely delayed and slow.
This came in waves where at the best point, I was alert
and able to communicate to my wife and let her know what was happening and how I was feeling. In these moments, the symptoms weren't unbearable. At the worst points though I truly thought my body was going to shut down and I was going to die. These waves came and went for over an hour until I finally pulled out of it.
Once it was over, I was completely exhausted and went straight to sleep. The next day I felt like I had been hit by a truck and didn't get out of bed the entire day (note: I had been feeling just fine in the days previous).
Today I went to see my LLMD neurologist and he did not think that this was a stroke or seizure (which surprised me). His POV was that this could be an allergic reaction to the abx. I asked him about
a Herx and he said 'could be' and moved on to recommending that I see an allergist tomorrow to test for a reaction to the Ceftin.
Finally, my questions....
Has anyone experienced or heard of similar situations that they believe are herxes? Or seizures/strokes?
Can herxes come on weeks after beginning a new abx rather than within a few days?
Has anyone experienced or heard of similar situations where a herx was 100% neurological with no flu-like feeling, pain etc?
Thanks to everyone in advance. Pretty shaken up over here as I'm scheduled to begin IV Rocephin treatment this Friday but am terrified of what that Herx could be like.