Brain Inflammation

Hey Guys,

Thanks for taking the time to read this post. I'm struggling with some major brain inflammation and have been for over a year now. In the thick of it, which was about 6-8 months ago, I was mostly unaware of how bad it really was. I was only awake for a couple hours at a time to work eat and have my once a week shower. I was SICK. I didn't understand what people were saying to me. I couldn't drive myself. The cognitive deficits were all pointing at encephalitis. I knew it was that because a family member of mine lost his memory from it. I felt my ability to remember simple personal facts slipping away from me. Forgetting my phone number, thinking I was going insane but not having the cell energy to dedicate towards worrying or crying- all I could do at that point when I became upset or the wind hit me the wrong way was manage my rage and sleep.

Waking up from sleeping made me feel tired. I could go on, as this is one small aspect of the bigger picture that I and most of us have experienced. Anyways- now I'm on a new protocol (self made) that seems to be working a bit for me.

I keep eating gluten and sugar after being Paleo-on and off Keto for months.
I know its because of stress, depression, and stepping up my antibiotic game.
I know the lyme craves sugar. Lol, so do I pre-lyme. I have a sweet tooth but even more so I find that when the herx sets in (they used to last hours, i would howl, seizures landed me in hospital, were talking all images or video you've seen of herx's, im textbook) Herx's have gotten easier. Less painful. They've moved to my skull.

For the past 2 months, when I herx, I can feel my brain moving around. I can feel it tighten, like I'm flexing it. Like I'm doing slow brain squats. Only those who understand will understand. Nothing like feeling your brain flexing spirochetes and toxins out. Anyway, when the herx spreads to the body and is in my bones, with every cell feeling toxic and a nerve chill going down my entire CNS.. joints aching, joints cracking just from lifting my phone or moving my leg in bed, hearing my jaw pop multiple times, etc. etc.

Yes, detox methods help but nothing ends it all like sugar or gluten. It makes it better and then makes it a lot worse. When I'm in horrible pain, sometimes a lot of the time lately I use this method. I'm yo-yo ing with my treatment.

I can clean this bad habit up. I guess this is a post to express how traumatic the encephalitis really is. I'm scared that if and when I actually start to get better, to beat this, that I'm either A. going to have some major PTSD from this whole experience and or B. I'm not going to know myself anymore or know how to jump back into the world.

I know myself healthy and I know myself sick.. but I don't yet know what lies beyond this. I'm struggling with the tricky aspects of healing mode and am fearing back to health mode thereafter.

Anyway,

thanks for listening.

I feel we will definitely be a different person than we were before. What many have been through is traumatic to say the least.
We have had to face the unknown directly in the face and swallow a big dose of fear and suffering along with it all.
The question that we all have to answer is...will I let this illness, even after I am healed still consume me in a negative way, or will I rise above and away from it and turn this experience into something beneficial and positive in our lives.

It could simply just be the act of treating others with care, love and understanding in our daily lives... or we could pursue our dreams that have not been fulfilled as of yet.

Being this ill, sure does make you see what the most important things in life are.

Take care and I wish you all continued healing. Jo

Thank you two so much. Very thought-driven answers, indeed.

I know that the future holds as much promise and the past did. I know that this will make me stronger.. I understand the power of positive thinking. I also know that when dealing with the brain - it has caused some personality changes.

I'm just hoping that in the future, I will find a way to navigate my now broken brain better. I'm hoping that the inflammation will melt away and whatever damage is left will repair quickly.

I know the future holds hope with stem cell research and oxygen therapy..

I think the problem is that Lyme has made my brain start to function differently and it scares me.

I slip into places unknown, constantly. When I go to sleep at night (or whenever my body shuts off usually 3, 4, 5 am) .. I never know who I'm going to be when I wake up in the morning.

When I'm herxing and the meds are working, I feel my brain "flex" and suddenly slam into familiar song lyrics, smells, memories, images of being on a school bus or the smell of my grandmothers house. Moments back in time. I think thats a good thing.. things are starting to come back to me.. but its fragmented and can slip away again.

What I'm saying is.. its traumatic on a daily basis because I'm always so scared to lose pieces of myself.
To have them yanked away or suddenly come swimming back to me.. its freaking overwhelming.

Its constant.

Purrrsiankitty said...
I'm certainly not encouraging you to eat poorly, but in the event you do eat gluten, there is a product called glutenflam. It breaks down gluten and keeps it from being absorbed.

I see it has some digestive enzymes in it but if you have gluten intolerance (celiac) it won't work for that.
I guess for accidental ingesting of gluten...it might help somewhat.

I have so many neuro symptoms too. I've lost so many memories ( short and long term). I am afraid of loosing my mind completely. I started Lexipro for anxiety a few months ago and that offered instant relief for the anxiety. Now, I feel it creeping back. The doctor has put me on neuroflam and neuro mag. Anyone have any experience with these? If so, what were your resuts? Has anyone's memory bounced back from a similar state?

Hey guys,

Also just wondering how I reply to certain people privately and how I post replies that TAG people?

I may be a millennial but the Lyme Brain is real, haha! Thanks!

Herestobeingme said...
Hey guys,

Also just wondering how I reply to certain people privately and how I post replies that TAG people?

I may be a millennial but the Lyme Brain is real, haha! Thanks!

You mean like what I just did?

You go to their post and click on the icon on the upper right corner of their post - that looks like a cartoon bubble with an exclamation mark in it. Then their post will come up in a new post and you can type something below it.

Thank You!

Girlie said...

Herestobeingme said...
Hey guys,

Also just wondering how I reply to certain people privately and how I post replies that TAG people?

I may be a millennial but the Lyme Brain is real, haha! Thanks!

You mean like what I just did?

You go to their post and click on the icon on the upper right corner of their post - that looks like a cartoon bubble with an exclamation mark in it. Then their post will come up in a new post and you can type something below it.