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Posted 8/17/2019 10:32 PM (GMT 0)
Any one have any ideas on how to help this. I’m down to just sitting in a dark room with no sound or light now. My brain always feels extremely fatigued and on fire at times.

Anyone know how to help this?


Thanks in advance
Posted 8/17/2019 10:52 PM (GMT 0)
What have you tried?

Maybe some brain detox? I bought LOLA for my head/brain - it’s supposed to reduce ammonia - not sure if it worked because my symptoms are all over the map.
Also I wasn’t taking it regularly - it is expensive .

I’m thinking of buying another bottle and using it consistently to see if it does help.

Have you tried Nutramedix Pinella and Burbur?

Or Jernigan Anti-tox II CNS/PNS?

Worth a try.
Posted 8/17/2019 11:37 PM (GMT 0)
Sure am... I can only go for around one errand per day, maybe one store because I have hyper-acuity to noises, creaking doors, loud sounds, just people working, and talking normally in grocery stores, I can hear talking very sharply and that along with neuropsychiatric manifestations, and a low tolerance for frustration. And most of the time I do prefer low light, a dark room or night time to work, it's quieter, darker and cooler which is what I like. I use ear plugs and headphones sometimes both because sound is sometimes too sharp for me. Put me in a room with very low light and quiet and I am best left alone, but if there's commotion just in the next room I get very annoyed and irritable, can't concentrate on working, which is why this is debilitating to where I can't get a normal type of job, people just assume I'm nuts. I went to a large thrift store today and it was mostly unpleasant, and driving there I was disoriented and in a fog to where I just didn't feel like myself most of the time and felt like my attention blanked out at times. When it really flares up, this can take on another level of misery, discomfort, physical, psychological, it's hard to describe when most stimuli irrationally startles fear and your body just hurts beyond what a normal level of exertion should...
Posted 8/18/2019 12:43 AM (GMT 0)
Ugh, I have experienced this hypersensitivity to stimuli, too, and it's maddening. I'm so sorry you are dealing with it. I do my best to limit stimuli to only what is most necessary, and I control for things I might not perceive as stimulating but might contribute to the overall load: smells, white noise, light, movement, activity, fabric textures, visual patterns, etc. I think that Jernigan's Neuro Antitox Basic has been helpful for me, as well as removing an old root canal tooth, acupuncture, and addressing MCAS. Most of all, though, retraining my limbic system has made the most difference. I hope you find something helpful very soon!
Posted 8/18/2019 1:34 AM (GMT 0)
Sounds like an overactive sympathetic nervous system. Have you tried any GABA-ergic supplements? GABA but also l-theanine, magnolia bark, valerian root, all work on GABA receptors. Wish I could help. I personally have never had a big issue in this regard but I imagine it's extremely inconvenient to say the least.
Posted 8/18/2019 3:35 AM (GMT 0)
Thanks for all the input everyone.

Ya I’ve tried all the gaba and similar supplements/ pharmaceuticals. I’ve honestly tried about 4 large trash bag full of supplements over the past decade, not one of them has helped. And usually can’t stay on any long because they all just irritate my brain.

Tried the Jernigan Anti Tox and the Pinella and burber along with every other Lyme detox method. None came close to helping. Often making me wonder if Lyme is the culprit.

I’m honestly stuck in my room 23.5 hours a day and anything I’ve tried has just made my brain symptoms worse.

Working on mast cell stuff since I am so sensitive to everything but I have yet to find something that helps. A lot of trial and error is what I’ve been told so hopefully something there.

Even avoiding the stimuli, I still feel terrible. The stimuli makes me feel worse and avoiding it I still feel terrible. And then anything I try to do to help makes me feel worse. No clue what to do anymore.
Posted 8/18/2019 4:32 PM (GMT 0)

borrelioburgdorferii said...
Sure am... I can only go for around one errand per day, maybe one store because I have hyper-acuity to noises, creaking doors, loud sounds, just people working, and talking normally in grocery stores, I can hear talking very sharply and that along with neuropsychiatric manifestations, and a low tolerance for frustration. And most of the time I do prefer low light, a dark room or night time to work, it's quieter, darker and cooler which is what I like. I use ear plugs and headphones sometimes both because sound is sometimes too sharp for me. Put me in a room with very low light and quiet and I am best left alone, but if there's commotion just in the next room I get very annoyed and irritable, can't concentrate on working, which is why this is debilitating to where I can't get a normal type of job, people just assume I'm nuts. I went to a large thrift store today and it was mostly unpleasant, and driving there I was disoriented and in a fog to where I just didn't feel like myself most of the time and felt like my attention blanked out at times. When it really flares up, this can take on another level of misery, discomfort, physical, psychological, it's hard to describe when most stimuli irrationally startles fear and your body just hurts beyond what a normal level of exertion should...

I live this along with extremely thick derealization & depersonalization on top of it 24 hrs/day. Overexertion may cause serious symptom progression long term or permanently.

Brab8878, "brain on fire" also echoes closely for me, too. I spent nearly two years fully psychotic- terrified of the rain. I have also failed with all antimicrobial treatment and am now pursuing autoimmune encephalitis much more intensely. Have you ever had a SPECT, EEG or Cunningham panel done?I have

Post Edited (Aerose91) : 8/18/2019 10:36:49 AM (GMT-6)

Posted 8/18/2019 7:36 PM (GMT 0)

Aerose91 said...

borrelioburgdorferii said...
Sure am... I can only go for around one errand per day, maybe one store because I have hyper-acuity to noises, creaking doors, loud sounds, just people working, and talking normally in grocery stores, I can hear talking very sharply and that along with neuropsychiatric manifestations, and a low tolerance for frustration. And most of the time I do prefer low light, a dark room or night time to work, it's quieter, darker and cooler which is what I like. I use ear plugs and headphones sometimes both because sound is sometimes too sharp for me. Put me in a room with very low light and quiet and I am best left alone, but if there's commotion just in the next room I get very annoyed and irritable, can't concentrate on working, which is why this is debilitating to where I can't get a normal type of job, people just assume I'm nuts. I went to a large thrift store today and it was mostly unpleasant, and driving there I was disoriented and in a fog to where I just didn't feel like myself most of the time and felt like my attention blanked out at times. When it really flares up, this can take on another level of misery, discomfort, physical, psychological, it's hard to describe when most stimuli irrationally startles fear and your body just hurts beyond what a normal level of exertion should...

I live this along with extremely thick derealization & depersonalization on top of it 24 hrs/day. Overexertion may cause serious symptom progression long term or permanently.

Brab8878, "brain on fire" also echoes closely for me, too. I spent nearly two years fully psychotic- terrified of the rain. I have also failed with all antimicrobial treatment and am now pursuing autoimmune encephalitis much more intensely. Have you ever had a SPECT, EEG or Cunningham panel done?I have

I had a spect scan done. Showed history of brain injury with hypoperfusion in prefrontal cortex and temporal lobe. Thinking I should have EEG or NeuroQuant done now.
Posted 8/19/2019 1:23 AM (GMT 0)
I can't remember, did you ever look into multiple chemical sensitivities? Wish I could be of help as this sounds incredibly frustrating, I can't say I relate but I really empathize, being stuck bored for all but a half hour of the day sounds like a living nightmare
Posted 8/19/2019 1:54 AM (GMT 0)
When i get the results back from my new doctor I'll report back. I rarely if ever have met others with brain issues this bad and lately im leaning heavily toward autoimmune. Curious what thiddoc reports back
Posted 8/19/2019 3:12 AM (GMT 0)

jb1994 said...
I can't remember, did you ever look into multiple chemical sensitivities? Wish I could be of help as this sounds incredibly frustrating, I can't say I relate but I really empathize, being stuck bored for all but a half hour of the day sounds like a living nightmare

Thanks for the kind words. I honestly don’t react to anything like perfumes, shampoos etc like MCS patients do. I mostly react to medications/ supplements etc.

And when I avoid all supplements and medications I still feel brain dead and horrible and not able to leave my room.

Have some upcoming appointments with different doctors ( Neil Nathan and someone good with Lyme effects on brain) so will report back if I figure out anything that could help others.

Thanks for the support everyone
Posted 8/19/2019 3:14 AM (GMT 0)

Aerose91 said...
When i get the results back from my new doctor I'll report back. I rarely if ever have met others with brain issues this bad and lately im leaning heavily toward autoimmune. Curious what thiddoc reports back

Good luck. Let us know how it goes.

I was able to stay on LDN for awhile, which on paper should be great for brain auto immune stuff as it helps calm down brain inflammation/ glial stuff but it never helped me.
Posted 8/19/2019 3:17 AM (GMT 0)
This article explains my brain fatigue very well. I feel like I’m at 1%. The only problem is I’ve never had a brain injury. I did play hockey my whole life and symptoms started while I was playing but never lost consciousness or anything once.

https://www.braininjury-explanation.com/consequences/invisible-consequences/neurofatigue
Posted 8/19/2019 12:53 PM (GMT 0)

Brab8878 said...


Good luck. Let us know how it goes.

I was able to stay on LDN for awhile, which on paper should be great for brain auto immune stuff as it helps calm down brain inflammation/ glial stuff but it never helped me.

I took LDN for a while, too- a couple times. It never helped me at all
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