cerebral water retention / cerebral edema from Lyme/co-infection

Hi, has anyone experienced this?  If so, how was it handled (or by whom)? 

Can you ever feel the swelling? The very top of my head gets very hot and then swells and you can actually feel the swelling on the outside. Do you ever have that?? I posted here awhile back about it but no one knew. Obviously some sort of inflammation but I was concerned it was my brain. Did a neurologist diagnose the cerebral edema or LLMD? Scarey stuff huh? Thanks D

Hi Dowa,

You have seen / felt swelling directly?  Hmm... I get sore spots on my head, but haven't noticed any bumps, external swelling.  Has your doctor seen or felt them?  I'm curious, have you had a SPECT scan?  I know that just shows perfusion (blood flow), but I'm wondering if it is indicative of other (related) abnormalities. Do you get any headaches?  Have any issues with lying down or sleeping?

I haven't been diagnosed with cerebral edema, but had a doctor tell me I need to be checked out for it.  I have water collecting around my eyes, and severe dry eye. 

Yes, scary stuff, most definitely.

Tracu

Yes I had the spect scan, showed moderate neuro-toxicity with severe shunting in the tissues. (leakage) Not good. The swelling is not like a small swollen spot, but my whole head (top) will swell and you can feel it. No one is sure what is causing it but I also have small seizures from time to time with exposures to severe fragrance. Weird I know. My nervous system has suffered the most, I am recovering from toxic mold toxicity as well as the Lyme. Yes headaches are a problem and vision problems come and go but are severe when they are present and I am unable to read anything. Sleep, you never know. It varies between being absolutely sleepless to sleeping like I am drugged. Very unpredictalbe also.