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Posted 6/29/2018 11:12 AM (GMT 0)
hello every time i start abx i start to have brain on fire and migrane feeling and get worse when talking have somebody tryed that and when i stop i am much more sick for about 1-2 weeks am i destroying something in my central nervous system since my nerves in my brain starts to burn?
Posted 6/29/2018 2:09 PM (GMT 0)
The name of this post and your description is interesting because of a new Netflix movie that is out (true story) called Brain on fire.

The woman was diagnosed with an "autoimmune encephalitis". Basically a fancy way of saying CNS/Spine inflammation but we don't know what is causing it so let's use the word "autoimmune".

I see the trailer and I'm thinking that chick had/has lyme disease.
Posted 6/29/2018 2:23 PM (GMT 0)
hi dacarte i have watched that movie for some month agosmile
Posted 6/30/2018 2:12 AM (GMT 0)
Interesting fact- you don't have pain receptors in your brain so any percieved pain is just your nervous system being overstimulated. I've had it. It felt like my brain was burning and being pressed in a vice.

If it's coorelated with the times you take antibiotics it definitely sounds like die-off to me. As uncomfortable as it is, it's a good sign! A step closer to healing
Posted 6/30/2018 2:45 AM (GMT 0)
I've had burning scalp and feeling like I had brain inflammation. Had surges of what felt like swelling in spots in my head. Would last a few seconds and go away and then move to another spot. The way it felt reminded me of a pot of stew cooking on the stove on a very low boil with bubbles slowly rising and sinking. That's what my brain felt like it was doing. Wasn't terribly painful, but quite disconcerting. I don't like any symptoms that mess with my head. I think I had anxiety with it, too.

I would back off on the treatment or call the doctor about it. Brain inflammation can lead to permanent damage. Definitely discuss with LLMD.

I didn't treat with antibiotics. I've been using Buhner's herbal protocol. I think most of my head symptoms happened after I started Sida acuta. I later added kudzu root tincture, 15-20 drops, and that seemed to ease my head symptoms.
Posted 6/30/2018 2:51 AM (GMT 0)
Dr. Mary Ackerley wrote an article entitled, " Brain on Fire." You can read it here: paradigmchange.me/wp/fire/
Posted 6/30/2018 3:45 AM (GMT 0)
I have been hospitalized for brain encephalopathy twice. My brain swelled so much I could not put on a hat.It felt like you could cook an egg on my brain for quite a while. There are only a few abx that cross the blood brain barrier.

It’s been a long road finding the right combinations and protocols. I have been actively treating for babesia, which lives on red blood cells. I have been doing ultraviolet therapy (among many other things) which I feel has lessened the brain swelling.

Apple cider vinegar, serrapeptase x’s 3, b12, parasite cleansing, healthy fats, deep breathing, moderate walking, cold showers, yoga.

I got to a decent place then a little bit of gluten and sugar sent me into a month long downward spiral. No more gluten smile
Posted 6/30/2018 4:56 AM (GMT 0)

Aerose91 said...
Interesting fact- you don't have pain receptors in your brain so any percieved pain is just your nervous system being overstimulated. I've had it. It felt like my brain was burning and being pressed in a vice.

If it's coorelated with the times you take antibiotics it definitely sounds like die-off to me. As uncomfortable as it is, it's a good sign! A step closer to healing

Also - the scalp, blood vessels, meninges have pain receptors that could feel like brain pain.
Posted 6/30/2018 4:59 AM (GMT 0)

Mind body spirit said...
I have been hospitalized for brain encephalopathy twice. My brain swelled so much I could not put on a hat.It felt like you could cook an egg on my brain for quite a while.

That sounds horrible!

Did minocycline help?
Posted 7/1/2018 1:18 PM (GMT 0)

dacarte3 said...
The name of this post and your description is interesting because of a new Netflix movie that is out (true story) called Brain on fire.

The woman was diagnosed with an "autoimmune encephalitis". Basically a fancy way of saying CNS/Spine inflammation but we don't know what is causing it so let's use the word "autoimmune".

I see the trailer and I'm thinking that chick had/has lyme disease.

As someone who seems to only get minimal treatment when I mention the phrase "encephalomyelitis" I believe this complex disease is interchangeable with "ME, CFS, MSIDS" and the gumming up of the (neural) works is the more complicated damage to assess. (Anti-NMDA,GABA, you name it).

I think that stealth infections (bed bugs, mosquito, tick with hidden or no rash) are at the root, and they bring in opportunistic latent infections (CMV, HSV).

Anyway thanks dacarte3, I just watched Brain on Fire to see what's what and I think it was 100% Lyme n Co and/or stealth infection pathogen related.

Anyone here had a brain biopsy during one of their episodes? I hear Dx accuracy of diagnoses in CSF is about 50/50, same as blood IgG for Lyme.

Not such a rare disease after all if you just put them under the umbrella of Lyme and co and friends.

Post Edited (borrelioburgdorferii) : 7/1/2018 7:23:10 AM (GMT-6)

Posted 7/1/2018 1:40 PM (GMT 0)
Def a symptom I've experienced, especially when I was early on in treatment. I'm a broken record on this, but if you are getting constant, intense, unyielding herxes you may want to explore lowering dosages or meds. Could also look at pulsing as well. I'd talk to your doctor about that. Otherwise it's too easy to burn out on treatments if one is a constant high intensity herx-state. Some meds I'll have a very nasty herx but it tapers after about a week, and other meds it is unrelenting, it just depends...

And I don't consider herxing per se to be bad, generally consider it to be a sign of med effectiveness, but one should try to keep it under control. So best strategy imo is finding a pace of the treatments that works for you and do as much detox as possible.
Posted 7/1/2018 2:44 PM (GMT 0)
What treatment is helping,I have none as no tests positive but am crumbling
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