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Community Love for Hannah’s Brain Recovery
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$947 raised of
29 donations
My name is Hannah. I am 29 years old. I have not been truly "healthy" since I was 18.
At 22, I was diagnosed with Lyme disease. That opened the door to finding Bartonella, Babesia, Epstein-Barr, and Mycoplasma, a collection of chronic infections that can ravage the nervous system. Around the same time, I was also diagnosed with Functional Neurological Disorder (FND), which explained some of the seizures, tics, and movement issues I was already having.
For years, I managed with nervous system retraining, psychiatric intervention, and working with a specialist out of state who helped me make progress with my Lyme and coinfections. I tried to believe that if I just worked hard enough at regulating my nervous system, I could get better. Mindset and nervous system work can only go so far when it comes to chronic illness, and I am not getting better. I am getting much worse.
What Is Happening Now (The Crisis)
Over the last 6–7 months, my brain has begun to fail me in ways I cannot control or explain.
- Cognitive Decline: I cannot remember things that happened three months ago. I struggle to spell words I once knew. My brain feels like it is "lagging behind" my own vision.
- Seizures: I have five distinct types of seizure-like episodes. One type (Type E), which began in Fall 2025, involves overwhelming fear, an electric surge in my head, flushing, vision blacking out, internal dialogue halting, and a post-seizure headache so severe I cannot function. I have had to lie on my stomach to keep it from worsening.
- Psychiatric Episodes (Daily): Every single day, I experience episodes of severe paranoia, emotional dysregulation, and OCD-type compulsions that I have never had before. Then, hours later, I return to "lucidity" exhausted, afraid, and knowing another episode will come.
- Physical Sensation of Brain Inflammation: This is not a metaphor. My brain feels physically inflamed, like it is being deep-fried. Like it is fighting something I cannot see. I can feel the burning, the pressure, the "buzzing."
- Tremors: This week, for the first time in years, my tremors have become constant instead of occasional.
I have been told this is "just anxiety." I have been told to try harder at nervous system retraining. I have been told that because I have an FND diagnosis, all of this must be psychological.
But I know my body. This is not my FND. This is something new. Something aggressive. Something that feels inflammatory, infectious, or autoimmune.
What I Am Trying to Figure Out
I do not have the answers. I wish I did.
But after months of tracking my symptoms, researching medical literature, and working with whatever doctors will listen, I have a list of possibilities that need to be ruled in or ruled out.
My greatest fear is encephalitis, which is inflammation of the brain itself. This can be caused by autoimmune encephalitis (where the immune system attacks the brain), or infectious encephalitis (a lingering viral or bacterial infection, possibly triggered by my history of Lyme, EBV, or the shingles I had in February 2026).
Encephalitis would explain almost everything: the daily psychiatric episodes, the cognitive collapse, the seizure-like events, the physical sensation of brain inflammation, and the rapid progression.
But there are other possibilities too:
Craniocervical instability (instability in the upper neck that can compress the brainstem and cause seizures, brain fog, and autonomic failure)
Mitochondrial dysfunction (already suggested by a genetic variation I have and severe blood sugar crashes)
Ehlers-Danlos syndrome (EDS) — a genetic connective tissue disorder that I have many clinical features of. EDS is not the answer itself, but it could be the underlying vulnerability that makes my body prone to dysautonomia, MCAS, medication reactions, and possibly craniocervical instability. I need genetic testing to know if this is part of my picture.
Cerebral folate deficiency or other metabolic issues related to another genetic variation I have (MTHFR).
I do not know which, if any, of these is the primary driver. That is why I need testing. I need to rule things out systematically, not chase one theory.
What Medicaid Will Not Cover
I am on Medicaid. I am grateful for it. But Medicaid will not cover the tests I urgently need to figure out what is happening to my brain.
The following tests will help to narrow down what could be causing the increase in symptoms:
- Autoimmune encephalitis panel (blood + spinal fluid) $1,800
This is my greatest concern. Could explain the daily psychiatric episodes, brain inflammation, and seizures.
- CSF analysis (lumbar puncture) $1,000
To check for infection, inflammation, or autoimmune markers in my spinal fluid.
- Long-term EEG (48–72 hours) $800
Could capture seizure activity that standard EEGs miss — especially for the new seizure type (Type E).
- Cervical MRI with flexion/extension $1,200
To rule out craniocervical instability — a potentially treatable cause of seizures, brain fog, and autonomic collapse.
- Genetic testing for EDS (full panel) $2,500
To determine if EDS is part of my underlying picture. Not the answer itself, but crucial context for my doctors.
- Brain MRI with contrast $1,500
To look for signs of encephalitis, demyelination, or other structural problems.
- Out-of-state specialist $4,000
The specialist who helped me make progress with my Lyme and coinfections in the past is not covered by Medicaid. I need to return to them to coordinate this complex workup.
- Medications and supplements $1,000
To cover the costs of whatever treatments come out of these tests — plus the supplements I already need to stay functional (uncovered by Medicaid).
Total Goal: $14,150
If I exceed the goal, the extra funds will go toward follow-up care and any ongoing treatments that come out of these tests (IVIG, steroids, physical therapy, etc.).
What I Am Asking For
I am not asking for pity. I am not claiming to have the answers. I am asking for help finding them.
I have done the research. I have built a detailed medical timeline. I have connected dots that multiple doctors have missed. I know which tests I need and why.
But I cannot afford them. And Medicaid will not cover them because they are considered "not medically necessary" by a system that does not understand complex, invisible illness.
If I had cancer, people would understand. They would see the urgency. But because my symptoms are invisible (brain fog, internal tremors, seizures that look like staring spells, daily psychiatric episodes) I am often dismissed as "anxious" or "dramatic."
I am neither. I am a person whose brain is under attack, and I am trying to figure out why.
The Bottom Line
I do not know if I have autoimmune encephalitis. I do not know if I have craniocervical instability. I do not know if EDS is part of this. I do not know what is attacking my brain.
But I know that my brain is getting worse. I know that the daily psychiatric episodes are becoming dire. I know that the seizures are changing. And I know that without these tests, I will continue to be told that this is "just anxiety" while whatever is attacking my brain continues to do so.
I need to rule things out. I need to find the real cause. And I need help to pay for the tests that Medicaid refuses to cover.
If you cannot donate, please share this campaign. Please help people understand that invisible does not mean imaginary.
And if you have ever been dismissed by a doctor, told it was "all in your head," or watched a loved one suffer without answers, you already know why this fight matters.
Thank you for reading. Thank you for caring. And thank you for helping me find out what is wrong with my brain.
— Hannah
(P.S. If you have not heard of or seen the movie ‘Brain on Fire’ with Chloë Grace Moretz, go give it a watch!)
Organizer and beneficiary
Hannah Mongie
Beneficiary