Hsv encephalitis

Hi, I'm curious to know if there is anyone in this forum who never received treatment for viral encephalitis ( hsv1 and/or 2) If so, did any symptoms improve ( i.e fatigue) over time?
Also sorry if I sound ignorant but is this something that is highly contagious or transmissable if people carry a virus orally?
I'm asking because I suspect I've been around someone who tested + for hsv (not sure which type) and a number of close contacts are complaining of similar neurological and physical symptoms. The person has seizures. Even the individual's pets are ill.
Is this even possible...hopefully not but I don't know enough to speak to it and things that i read are so conflicting.
For example..."you would be dead" but then I've also seen posts that say "not dead but left with neurological deficits".
Please reference my initial post for symptoms and how this started for me.

My uncle (55M, 190cm, doesnt smoke or drink) admitted into a hospital because he had eczema and it was starting to affect a lot of other things. I haven't been with him as I study in another state but I visited him recently to find out how he is doing. His health has deteriorated significantly since the last time I saw him (a month ago), he has gone from 90kg to 65kg, not being able to eat, not responding to family members and having trouble walking. I spoke to my aunt and got a bit of information and she showed my the progress notes and there seems to be a lot of different symptoms.
progress note: imp lung empyema - staph - MSSA - escalated to meropenem now - rpt C&S done - pending - kiv ECHO delirium - sepsis qnd possible encephalitis and hypoglycaemia septicaemia MSSA cover for possible HSV encephalitis - cold sores+Ve eczema ++ low mood vanco trough - raisee - thrombocytopenia related ? SIADH - hypnatraemia hypoglycaemia
I'm confused and stressed as to what we should do going forward, should we move hospitals? do nothing and keep monitoring him? He has tried leaving the hospital twice now and when we questioned him he wasnt coherent
sorry im new to posting on reddit so i dont know how to add images and things

It was battle to get it then he looked super excited when I said I made an appointment w neuropsychiatrist to see wtf is wrong me from hsv/herpes encephalitis. He thinks I am bipolar NOPE THIS VIRIS IS TAKEN MY LIFE
He said oh just a cold sore nothing to worry about.... I lost it in his office like I do w all of them
So my issue is will they see what's wrong w me from lumbar puncture in 6 weeks when I go to neurology.
Im scared to react poorly to the meds since I react poorly all the time.
Idk I am scared and want to talk to someone.

Herpes simplex virus type 1 (HSV-1) encephalitis is the most common cause of sporadic fatal encephalitis worldwide. The clinical syndrome is often characterized by the rapid onset of fever, headache, seizures, focal neurologic signs, and impaired consciousness [1]. HSV-1 encephalitis is a devastating disease with significant morbidity and mortality, despite available antiviral therapy.
Did you know you could get herpes in your brain? Because I didn’t. Just saw my first case in 10 years of being the hospital.

24 AFAB 5’6 135lb in CA.
CC: fever 10 weeks, fatigue, tachycardia, nausea, weakness, zero appetite/hunger Daily: lithium carbonate, nortriptylene, vitamin B12. PRN: hydroxyzine, promethazine (*not at same time), albuterol inhaler (haven’t used for 6+ mo) Hx: mild asthma, anxiety & depression, low vitamin D & B12, mild allergies except anaphylaxis to a sugar free sweetener
All negative labs and tests: - EEG, head MRI ww/o contrast, head MRV ww/o contrast, abdo & pelvic UT, abdo & pelvic CT ww/o contrast, chest X ray, 12 lead x3 - lithium level, nor level - basic metabolic panel x4 - urinalysis, pregnancy - CBC, mag, ferritin, iron, folate, reticulocytes, blood cultures, lipase, sed rate, CRP, procalcitonin, sepsis panel, TSH, T4, APTT, INR, D-dimer, troponin, rheum factor, ANCA screen, repeat ANA, TB, mono - CSF: cocci, HSV, cell count, meningitis, encephalitis, culture, protein, glucose, fungal, gram stain
Tl;dr: Got very sick, flu resolved, still having symptoms, got serotonin syndrome in the midst of it, still feel wrong, aimless and hopeless and would so appreciate any direction

Story: I worked the worst 24 of my life, followed by another night shift. During, temp 102+ after 1000mg Tylenol 800mg ibuprofen. Called out, couldn’t remember how to drive home, brain fried and sickest I’ve ever been.
Day 4 urgent care swab pops flu A. UC doc gives 3x8mg SL zofran so I can drink water. Not crazy, I’m an EMT, get exposed a lot.
1.5wks no better, new cough, chest tightness. GP messages maybe pneumonia, z-pack. Taken as directed, no change. 2wks I’m still out of it, partner drags me to ED after getting coworkers to convince me. Fever 100-101.9.
ED does labs, chest X ray, abdo UT (thought they found a renal mass, CT later negative), 12 lead, resp panel, all neg. Refills zofran, sends me home.
3wks abdo pelvic CT negative. GP ordered more labs. Only abnormal ANA 1:80, referral to rheumatology. Refills the zofran.
More functional but same symptoms, 7/10 instead of 9/10. Extremely fatigued. Can’t walk far. Bit off balance, feels like I spent all day on a boat and just got back on land. Very nauseous, zofran 2x sometimes 3x as directed. Zero appetite or hunger. Lost near 20lb. Tachy in 100s. Weak, shakes, chills. I don’t feel sick from the virus anymore, but something is definitely off.
4wks even more nauseous. Issues with remembering things. I get confused. Forgetting conversations I had 2min ago. AO2 not to baseline. Partner takes me to ED. I didn’t really know what was going on.
ED all labs again, head MRI, MRV, cultures, LP all negative. Positive for ocular and pedal clonus. Doc concerned about serotonin syndrome. Consulted with hospitalist and neurologist and they admit me.
Stopped zofran, more neg labs except low B12 and D, got shot and supplements. Negative EEG, neuro consulted, discharged. I’m mentally clear off zofran. No one before checked risks & med interactions. Psychiatrist agrees SS, lowers nor for 1mo 50 to 25, switch to promethazine.
Rheum says seriously think it’s not autoimmune. Orders specific labs, all neg, refers me to infectious diseases. ID appt will be at 12wks, four days before FMLA ends.
10wks now. Same symptoms. Constant low fever, 99.3-99.9. Antipyretics don’t do much. Fatigue, weakness. Tachy, 95-115 up to 170 no reason. I’m deconditioned but not that much. Nausea’s mostly gone. Zero hunger. Sometimes the boat rocking sensation at rest. I can do a bit more. I’m just still not right. I have a very physical job, I often work 60hr+, run most days, go hiking. I feel like I’ve been flattened.
Waiting for ID now. GP has zero clue if ID doesn’t solve everything. I just need some outside input. Please someone tell me if there’s something you’re thinking is missing. I want to go back to work and my life so badly.

Note: Flew home recently. Felt a lot better— fever broke for the first time, fluctuated 97.8-99.3. Same thermometer (verified accurate). Back here, 99.3-99.9, feel same as before. Partner’s had GI issues since Jan when he moved in, seems like IBS unsure until scope. I’ve lived here for 1.5yr. I did find a little spot of mold in our shower 3wk ago, cleaned it out No change in diet, environment, meds, plants/animals, stress, beforehand. No family hx of autoimmune or genetic conditions known.

Dear [Congressman's Name],
I am writing to you as a concerned constituent to urge for increased funding towards the development and distribution of therapeutic vaccines for HSV (Herpes Simplex Virus), particularly the Moderna vaccine and others in similar development pipelines. As you are aware, HSV infections, including HSV-1 and HSV-2, affect a significant portion of the population and pose serious health concerns.
According to recent statistics, HSV-1 infects an estimated 67% of the global population under the age of 50, while HSV-2 infects approximately 11% of individuals aged 15-49 worldwide. These infections not only cause physical discomfort but also lead to severe complications, including but not limited to, encephalitis, a life-threatening condition with devastating neurological consequences.
Furthermore, beyond the physical implications, there exists a pervasive stigma associated with HSV infections, impacting individuals' mental health and well-being. The social stigma attached to HSV-1 and HSV-2 often leads to discrimination, isolation, and psychological distress among affected individuals. This stigma can hinder individuals from seeking necessary medical care and support, exacerbating the public health burden of the disease.
In light of these pressing issues, I urge you to prioritize funding towards research and development efforts aimed at advancing therapeutic vaccines for HSV. Specifically, I implore you to allocate resources towards supporting initiatives such as the Moderna vaccine and other promising candidates in clinical trials. Increased funding in this area holds the potential to alleviate the burden of HSV infections, mitigate severe complications like encephalitis, and combat the stigma associated with the disease.
Investing in therapeutic vaccines for HSV not only promotes public health and well-being but also represents a prudent allocation of resources towards addressing a prevalent and underserved health issue. I believe that by championing this cause, we can make significant strides in improving the lives of millions affected by HSV infections.
Thank you for your attention to this matter. I look forward to your support and advocacy for increased funding towards HSV therapeutic vaccines.

Dear [Congressman's Name],
I am writing to you as a concerned constituent to urge for increased funding towards the development and distribution of therapeutic vaccines for HSV (Herpes Simplex Virus), particularly the Moderna vaccine and others in similar development pipelines. As you are aware, HSV infections, including HSV-1 and HSV-2, affect a significant portion of the population and pose serious health concerns.
According to recent statistics, HSV-1 infects an estimated 67% of the global population under the age of 50, while HSV-2 infects approximately 11% of individuals aged 15-49 worldwide. These infections not only cause physical discomfort but also lead to severe complications, including but not limited to, encephalitis, a life-threatening condition with devastating neurological consequences.
Furthermore, beyond the physical implications, there exists a pervasive stigma associated with HSV infections, impacting individuals' mental health and well-being. The social stigma attached to HSV-1 and HSV-2 often leads to discrimination, isolation, and psychological distress among affected individuals. This stigma can hinder individuals from seeking necessary medical care and support, exacerbating the public health burden of the disease.
In light of these pressing issues, I urge you to prioritize funding towards research and development efforts aimed at advancing therapeutic vaccines for HSV. Specifically, I implore you to allocate resources towards supporting initiatives such as the Moderna vaccine and other promising candidates in clinical trials. Increased funding in this area holds the potential to alleviate the burden of HSV infections, mitigate severe complications like encephalitis, and combat the stigma associated with the disease.
Investing in therapeutic vaccines for HSV not only promotes public health and well-being but also represents a prudent allocation of resources towards addressing a prevalent and underserved health issue. I believe that by championing this cause, we can make significant strides in improving the lives of millions affected by HSV infections.
Thank you for your attention to this matter. I look forward to your support and advocacy for increased funding towards HSV therapeutic vaccines.

Continuing from my first post on this, I tried fasting and it took 2 days before I felt like the first time I was infected. Side of back hurt, tingly, chills, fever etc.
So the papers that state that autophagy cause HSV to reactivate from latency works!!!
Paper that’s shows HSV reactivated during autophagy
See: https://www.mdpi.com/1422-0067/23/21/13643
Paper showing cells are protected in autophagy
https://www.researchgate.net/profile/Natik-Piri/publication/51398353_Activation_of_autophagy_in_retinal_ganglion_cells/links/629008bd55273755ebb9419b/Activation-of-autophagy-in-retinal-ganglion-cells.pdf
Paper showing when not in autophagy, HSV goes latent in the ganglia because of how they operate
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4836354/
Continuing…
But problem, the virus becomes active, and then I took acyclovir and the virus goes back to latency.
Obviously this is what’ll happen.
So what’s next? Research.
I’m reading more papers on how I can sustain autophagy or even turn it up higher whilst trying to prep my body to battle virus.
The virus becomes very overwhelming and I could feel it. If I can keep autophagy on whilst killing the virus, I think that’ll work. Why is autophagy required? It prevents latency of HSV (see above paper and there are many more). Problem is the replication of the virus phase.
I’m starting to also believe that those who get unexplained migraines after a hard day work or stress of no good are probably HSV+. After a lot of research, it makes sense that the virus becomes problematic under autophagy induced by many sources.
Unfortunately, autophagy doesn’t kill HSV like other viruses it seems. Either they replicate to much or the virus knows how to escape autophagy. Its hit or miss ala the paper:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5744147/
Problem is getting into autophagy via starvation (no water or antivirals) and then taking antivirals and stay in autophagy state.
I’m currently looking at loading up on antivirals that prolong in the system longer, fasting, introducing anitivirals and using heat to keep the autophagy going. Maybe the vaccines that promote rapid T cell response like the GSK vaccine coming to market, may be when I try this again.
Please don’t try this if you are immunocompromised, it’s really dangerous if the virus gets into your CNS uncontrollably, it can cause encephalitis and kill you.
See https://pubmed.ncbi.nlm.nih.gov/36711831/
Where if you have genetic defect with autophagy, the disease can hurt you.

Hello, I (29F) was hospitalized last year for HSV1 meningoencephalitis. I have been doing well for the past months, but I think my cold sores are flaring up again (so far only had some tingling around the lips) and am super anxious about it (for obvious reasons). Has anyone else experienced a flare up after treatment?

Is it possible?
I’ve been going down the rabbit hole on starvation induced autophagy to cure yourself of some diseases.
So far, it’s seems like autophagy induces cells to start cleaning house. This causes hsv to be unwrapped by the host cell and reactivate. Upon reactivating, the virus starts replicating and goes back to the skin.
But one thing is it seems like autophagy protects cells. So in that state hsv can’t infect cells. (This is what happens to protect you from encephalitis etc, some people have a degraded or genetic disease impairing autophagy that allows hsv to grow in the brain)
So I’m thinking, taking antivirals and then dry fasting may be a solution.
TL;DR: take antivirals, dry fast, HSV will reactivate and travel to the skin and can’t reinfect neurons. Use antivirals to kill the virus.
Shall we try?

Hi everyone! I've posted this in various Herpes subs but thought I'd post in here as well, is there anyone willing to be interviewed regarding their experience with a Herpes diagnosis and answer a few questions? Ideally would prefer if you’d be willing to be videoed and show your face, this will be shared on social media. I want to raise awareness on Herpes and share people’s real stories, especially topics that aren’t often shared in mainstream society (like HIV after HSV diagnosis, Encephalitis, Neonatal Herpes, Antiviral Resistance, severe physical symptoms, etc). If you don’t necessarily fit in those categories, I’d still love to speak with you if you are willing!
If you don’t want to show your face, please still reach out as I can create digital content just using your stories as words as well.
Thanks!

Dear [Congressman's Name],
I am writing to express my concern regarding the increasing prevalence of severe cases of herpes and to request your support in advocating for increased funding for the development and distribution of the Moderna vaccine for herpes.
Herpes is a highly contagious viral infection that affects millions of people worldwide, causing significant physical discomfort and emotional distress. While the herpes simplex virus (HSV) can manifest in various forms, including oral and genital herpes, severe cases can lead to complications such as meningitis, encephalitis, and neonatal herpes, which can be life-threatening.
I am particularly encouraged by the promising progress made by Moderna in developing a vaccine for herpes. Their mRNA technology has shown tremendous potential in combating infectious diseases, as demonstrated by the success of their COVID-19 vaccine. However, further research and development are needed to optimize the efficacy and safety of the vaccine for herpes and to ensure its accessibility to those who need it most.
By allocating additional funding to support the research and clinical trials of the Moderna vaccine for herpes, we can accelerate the timeline for its approval and implementation, thereby reducing the burden of this debilitating infection on individuals and communities nationwide. Moreover, increased advocacy efforts are crucial in raising awareness about the dangers of severe cases of herpes and the importance of preventive measures, including vaccination.
As your constituent, I urge you to prioritize public health initiatives aimed at combating infectious diseases like herpes and to champion the allocation of resources to support the development and distribution of the Moderna vaccine. Together, we can make significant strides in protecting the health and well-being of our communities.
Thank you for your attention to this important matter. I look forward to your continued leadership and support in addressing the challenges posed by herpes and other infectious diseases.
Sincerely, [Your Name]

Anyone willing to be interviewed regarding their experience with a Herpes diagnosis and answer a few questions? Ideally would prefer if you’d be willing to show your face, this will be shared on social media. I want to raise awareness on Herpes and share people’s real stories, especially topics that aren’t often shared in mainstream society (like HIV after HSV diagnosis, Encephalitis, Neonatal Herpes, Antiviral Resistance, severe physical symptoms, etc). If you don’t necessarily fit in those categories, I’d still love to speak with you if you are willing!
If you don’t want to show your face, please still reach out as I can create digital content just using your stories as words as well.
Thanks!

Hello, med student here :) , just want to ask if my interpretation for the following FLAIR MRI is correct. My group's clinical impression is HSV encephalitis, and based on the image, there is left medial frontal area of hyperintensity most likely due to a hemorrhagic lesion.
May I ask if this is correct? are there other feature or diagnostic findings in the image I am missing?
https://preview.redd.it/583px9w49klc1.png?width=640&format=png&auto=webp&s=6eae4726626fa90e87ff19d6e49051c5ca7efbca

I have HSV2 and psoriatic arthritis. I wasn’t able to find much information online about whether HSV changes the immune system or interacts/triggers autoimmune conditions.
Both of these are getting worse for me unfortunately - I’m on Valtrex 1g, lysine and no almonds for HSV but still have outbreaks, and am concerned about other side effects like encephalitis :/ I’m seeing my doctor today about possible med change or some other solution.
And regarding autoimmune disorders, when I have a herpes flare up I also use supplements to help my immune system fight off the virus - increase valtrex, Vit C, zinc. But does this trigger autoimmune issues? What I know about them is that they flare up because the immune system is TOO active and starts attacking your body. So does an attempt to strengthen it actually set it off? My rheumatologist said no..
I’m also working on my sleep and stress management, as well as inflammation. Supplements, curcumin, cutting out certain triggers.
Thanks in advance!

Teaser: My wife is having severe, progressing neurological dysfunction and doctors don't know why yet. Please read on if you might be able to lend any advise on this.
Summary: Critically low sodium ->neurological defecits->t2 FLAIR hyperintensities->severe cognitifive decline->currently waiting on biopsy results, but would like some ideas while we wait.
My wife [41][F] 5'4" 162cm, 125lbs/56kg, half ashkenazi/half "other", no drug use, no alcohol, healthy lifestyle, vegetarian. used to take prozac 10mg daily, adderall 10XR sometimes, and synthroid 75mg daily to manage hashimoto's thyroiditis. USA.
Last october, lost a lot of weight (got down to 103 from 125, but didn't feel bad yet - was still doing biking, being very active). Then got really sick. when she started throwing up curled up in the shower, I took her to the hosp. Diagnosed with critically low sodium level (115, normal is 135-140). They blamed the prozac, took her off it cold turkey. slowly raised her sodium level and sent her home.
No elevated temperature at any point. blood pressure low-to-normal.
Hasn't had a period in 2 months at this point.
Over the next month, we saw a nephrologist, as per hospital discharge advice. He ran plenty of tests and found nothing wrong.
Started sleeping 18 hours a day, easily. Falling asleep at the dinner table. falling asleep while talking to our kids.
It started to become obvious that there was a neurological component to this - she's a very smart person, but was having trouble grasping even simple concepts at work (new job, just started teaching again after a 9 year break to raise kids) - so add increase of stress to the list of problems.
nephrologist sent us to a neurologist who suggested an MRI.
one sample image at: https://imgur.com/a/fQ7vPAo
Radiologist report:
Diffuse ill-defined T2/FLAIR hyperintense signal involving the deep white matter of the left cerebral hemisphere mainly in the left anterior temporal lobe and extending into left subinsular region, left internal and external capsules, left occipital and left temporal white matter and splenium of the corpus callosum. No abnormal enhancement following IV contrast administration. Differential considerations include but not limited to toxic metabolic diseases, gliomatous cerebri, encephalitis (paraneoplastic, artery remained or infectious), and hypoxic ischemic injury. Please correlate clinically.
The MRI showed T2 FLAIR hyperintensities - not well defined, mostly in the left hemisphere. Very asymmetrical, very diffuse. not a well defined tumor at all. Neurologist was an infectious disease neuro, so he sent us to a neuro-oncologist, who took one look at the MRI and said "not cancer, go to the hosp NOW, they can run more tests faster there". Spent a week in the hospital, ran a few tests, did a lumbar puncture, got almost nowhere (all the CSF shows is MYEL value high - her myelin is degrading, don't know why), got sent home, with contact info for another neuro to discuss with. New neuro orders a SPEC MRI to compare to the original MRI. Spec shows no telltale signs of anything specific. just the same asymmetric T2 FLAIR hyperintensities. Did a full body CT scan looking for various cancers - turns up NOTHING remarkable.
No seizures. No evidence of anything noteworthy on multiple day-long EEG tests.
Some kind of autoimmune encephalitis was predicted, and 60mg daily prednisone was started.
Run as many blood and CSF tests as possible.
oligoclonal bands negative (and neuro says NOT MS for this and other reasons). No HSV. no HPV. No EBV. No JCV. No Lyme. Apparently, we're clean AF up in here. literally the only antibody found was west nile virus, and that wasn't an active infection. Everyone that lived in NY in the 2000s got it. almost certainly irrelevant.
Left eye gets cloudy. Went to retinal specialist. He thinks MS or CSF lymphoma. Sees "non specific white cells" in her eye. Also says there are signs of uveitis. He wants to see what the brain biopsy turns up.
At this point, we're at 5 months with no period. She's always very regular, and only 41 YO.
The prednisone did nothing noticeable neurologically. after 2 weeks, Tapered down from 60 to 0mg by 10mg per 2 days, to prepare for stereotactic biopsy. She'd been off pred for almost 2 weeks when they went in for a sample. Checking the sample during the procedure did not reveal anything substantial. No obvious cancer cells. Just inflammation. Now we wait 7-10 days for the proper biopsy results. I'm assuming they're gonna show non specific "inflammation" and we'll be back where we were a month ago, only having ruled a few things out.
Post biopsy (2nd day after), she's a distant mess. I'm assuming/hoping it's a bad recovery from the trauma of the procedure, but where she was "pretty bad" before, now she can't hold a conversation, is sleeping every chance she gets. Can't remember kids's names, what year it is, etc. Cannot walk without assistance. Can barely eat. does well on all physical neuro tests. Push-pull, follow my finger, hold out arms, pupil response - all fine. Ask her to remember 3 random words - FAIL.
Got another MRI today, shows maybe some shrinkage of the FLAIR hyperintensities. Neuro doc thinks this is a systemic inflammation thing, coming from outside her brain. No idea what though. Put her back on IV prednisone. Running genetic disease panel.
Even if she went back to her pre-biopsy surgery levels of awareness, that wouldn't be a recovery. She was top 20% of her peleton classes every day. had as much energy as a mom of 2 young kids could possibly have. 2 masters degrees. Very smart person. Highly organized. now, she gets asked where she is, and can't even think of the word hospital.
I think that's about all the info i've got, mostly condensed. IF you can offer any suggestions, I'll see if there have been tests run already about them. There's over 600 entries in her chart.
Does anyone have any guesses? Anyone seen something similar to this that we can dig into?
I'll answer any questions as fast as possible. I'm just sitting in the hospital watching my wife & mother of my kids slowly turn into a shell.
Thank you for reading

Teaser: My wife is having severe, progressing neurological dysfunction and doctors don't know why yet. Please read on if you might be able to lend any advise on this.
Summary: Critically low sodium ->neurological defecits->t2 FLAIR hyperintensities->severe cognitifive decline->currently waiting on biopsy results, but would like some ideas while we wait.
My wife [41][F] 5'4" 162cm, 125lbs/56kg, half ashkenazi/half "other", no drug use, no alcohol, healthy lifestyle, vegetarian. used to take prozac 10mg daily, adderall 10XR sometimes, and synthroid 75mg daily to manage hashimoto's thyroiditis. USA.
Last october, lost a lot of weight (got down to 103 from 125, but didn't feel bad yet - was still doing biking, being very active). Then got really sick. when she started throwing up curled up in the shower, I took her to the hosp. Diagnosed with critically low sodium level (115, normal is 135-140). They blamed the prozac, took her off it cold turkey. slowly raised her sodium level and sent her home.
No elevated temperature at any point. blood pressure low-to-normal.
Hasn't had a period in 2 months at this point.
Over the next month, we saw a nephrologist, as per hospital discharge advice. He ran plenty of tests and found nothing wrong.
Started sleeping 18 hours a day, easily. Falling asleep at the dinner table. falling asleep while talking to our kids.
It started to become obvious that there was a neurological component to this - she's a very smart person, but was having trouble grasping even simple concepts at work (new job, just started teaching again after a 9 year break to raise kids) - so add increase of stress to the list of problems.
nephrologist sent us to a neurologist who suggested an MRI.
one sample image at: https://imgur.com/a/fQ7vPAo
Radiologist report:
Diffuse ill-defined T2/FLAIR hyperintense signal involving the deep white matter of the left cerebral hemisphere mainly in the left anterior temporal lobe and extending into left subinsular region, left internal and external capsules, left occipital and left temporal white matter and splenium of the corpus callosum. No abnormal enhancement following IV contrast administration. Differential considerations include but not limited to toxic metabolic diseases, gliomatous cerebri, encephalitis (paraneoplastic, artery remained or infectious), and hypoxic ischemic injury. Please correlate clinically.
The MRI showed T2 FLAIR hyperintensities - not well defined, mostly in the left hemisphere. Very asymmetrical, very diffuse. not a well defined tumor at all. Neurologist was an infectious disease neuro, so he sent us to a neuro-oncologist, who took one look at the MRI and said "not cancer, go to the hosp NOW, they can run more tests faster there". Spent a week in the hospital, ran a few tests, did a lumbar puncture, got almost nowhere (all the CSF shows is MYEL value high - her myelin is degrading, don't know why), got sent home, with contact info for another neuro to discuss with. New neuro orders a SPEC MRI to compare to the original MRI. Spec shows no telltale signs of anything specific. just the same asymmetric T2 FLAIR hyperintensities. Did a full body CT scan looking for various cancers - turns up NOTHING remarkable.
No seizures. No evidence of anything noteworthy on multiple day-long EEG tests.
Some kind of autoimmune encephalitis was predicted, and 60mg daily prednisone was started.
Run as many blood and CSF tests as possible.
oligoclonal bands negative (and neuro says NOT MS for this and other reasons). No HSV. no HPV. No EBV. No JCV. No Lyme. Apparently, we're clean AF up in here. literally the only antibody found was west nile virus, and that wasn't an active infection. Everyone that lived in NY in the 2000s got it. almost certainly irrelevant.
Left eye gets cloudy. Went to retinal specialist. He thinks MS or CSF lymphoma. Sees "non specific white cells" in her eye. Also says there are signs of uveitis. He wants to see what the brain biopsy turns up.
At this point, we're at 5 months with no period. She's always very regular, and only 41 YO.
The prednisone did nothing noticeable neurologically. after 2 weeks, Tapered down from 60 to 0mg by 10mg per 2 days, to prepare for stereotactic biopsy. She'd been off pred for almost 2 weeks when they went in for a sample. Checking the sample during the procedure did not reveal anything substantial. No obvious cancer cells. Just inflammation. Now we wait 7-10 days for the proper biopsy results. I'm assuming they're gonna show non specific "inflammation" and we'll be back where we were a month ago, only having ruled a few things out.
Post biopsy (2nd day after), she's a distant mess. I'm assuming/hoping it's a bad recovery from the trauma of the procedure, but where she was "pretty bad" before, now she can't hold a conversation, is sleeping every chance she gets. Can't remember kids's names, what year it is, etc. Cannot walk without assistance. Can barely eat. does well on all physical neuro tests. Push-pull, follow my finger, hold out arms, pupil response - all fine. Ask her to remember 3 random words - FAIL.
Got another MRI today, shows maybe some shrinkage of the FLAIR hyperintensities. Neuro doc thinks this is a systemic inflammation thing, coming from outside her brain. No idea what though. Put her back on IV prednisone. Running genetic disease panel.
Even if she went back to her pre-biopsy surgery levels of awareness, that wouldn't be a recovery. She was top 20% of her peleton classes every day. had as much energy as a mom of 2 young kids could possibly have. 2 masters degrees. Very smart person. Highly organized. now, she gets asked where she is, and can't even think of the word hospital.
I think that's about all the info i've got, mostly condensed. IF you can offer any suggestions, I'll see if there have been tests run already about them. There's over 600 entries in her chart.
Does anyone have any guesses? Anyone seen something similar to this that we can dig into?
I'll answer any questions as fast as possible. I'm just sitting in the hospital watching my wife & mother of my kids slowly turn into a shell.
Thank you for reading

Recently dx with HSV1. I stumbled upon several reddit posts, research articles, and news stories on HSV encephalitis and let’s just say I spiraled (https://www.huffpost.com/entry/herpes-simplex-viral-encephalitis-symptoms_n_63e18befe4b07c0c7e0c0b74). I am so fearful of developing it despite being “rare” as I already survived a seizure due to low sodium secondary to addison’s disease, an autoimmune disease (YAY 2023!) I have acyclovir for symptom management and was recently offered to take it daily to prevent active infections. I am technically immunocompromised due to needing to take hydrocortisone for addison’s the rest of my life.
Has anyone found anything that backs up taking antivirals prevents chances of HSV encephalitis? My doctor didn’t know and didn’t want to entertain my anxiety 🙃

Recently discharged from my month long inpatient stay with HSV meningitis/encephalitis. 24F, healthy individual with no previous outbreaks (didn’t even know I had HSV).
Treated with a 21 day course of IV acyclovir, seizure medication (had a few non traditional seizures due to brain swelling) and Tylenol.
I don’t mean to cause anxiety- all doctors said it is SUPER rare and I’m lucky to be alive and fully recovered. Happy to chat with others that have experienced similar things!

Hi all! My son was recently diagnosed with AE, however we have not been able to identify a cause yet. I am sharing his story to see if anyone has had a similar situation. This is a long read but please share your thoughts!
My son is 11 years old and has been healthy most of his life. He had frequent ear infections early on and had tubes placed in his ears when he was 2. He has had some behavioral problems over the years along with learning difficulties, but never diagnosed with anything.
Back in September he was diagnosed with Strep throat and was put on Keflex for 7 days (missed about 4 days of school). His symptoms resolved and he was back to his normal self. About a month later he developed a fever and sore throat which lasted a week. The symptoms were very similar to strep. I took him to his PCP who said it was just a virus and he would get better soon (he missed 6 days of school). In November, right before Thanksgiving, he developed fevers, headaches, and dizziness (missed 3 days of school). He felt better on Thanksgiving and the day after, no fevers, just some occasional dizziness. I encouraged more water and gave him Tylenol for the headache.
November 25th is when he started to go downhill. That morning he had mentioned some dizziness. I again said drink more water and come eat breakfast and we will see how you feel after that. While eating his older brother said "Mom, there is something wrong with L". I looked over and he was grey and stiff. At first I thought he was choking but quickly realized he was having a seizure. He has never had a seizure before. My oldest called 911 and the medics came. His seizure lasted about 4 minutes and he was pretty much unresponsive after. While enroute to the hospital the medics thought he was posturing and noticed unequal pupils. He was still not coming around so the opted to intubate him to protect his airway. I am a nurse and I know that posturing and unequal pupils can be very bad. I immediately got sick to my stomach.
At the hospital we underwent a CT scan and labs. Everything was looking good. They were able to extubate him about 5 hours later. While very sleepy, he was pretty much back to baseline. They did an MRI that evening which showed "a small focus of T2/FLAIR hyperintensity in the subcortical region in the left temporal lobe, most likely a prominent perivascular space. Otherwise, normal noncontrast brain MRI." He was transferred out of the ICU to the medical floor and admitted overnight for observation. He seemed a bit confused throughout the night but we attributed that to all the medications he had received. The 26th he was discharged with no real diagnosis and no reason for the seizures. He was not discharged on any anti-seizure meds, but had received a loading dose of Keppra in the hospital. The plan was to follow up as an outpatient for an EEG.
The 27th of November (the morning after he was discharged) he had 2 seizures at home. He was transported back to the hospital where he had a 3rd seizure. They admitted him again. This time they started working him up for meningitis/encephalitis. They did an LP which showed some WBCs but the PCR meningitis/encephalitis panel was negative. His labs also showed inflammation with an elevated sed rate and CRP. L had some memory loss and confusion which was very concerning. They decided they were going to start him on antibiotics and an antiviral and treat for both an infection and HSV. Although the HSV came back negative, they treated him anyways because they said sometimes you can get a false negative. They also started him on daily anti seizure meds. On the 3rd day of antibiotics and antivirals they repeated the LP. This again showed WBCs, but a negative meningitis/encephalitis panel. At this point they felt comfortable with stopping the antibiotics and antivirals because they got 2 negative PCR tests. He also had another EEG where he did have one seizure in the right temporal lobe. The seizure was not the typical unresponsive, shaking type. He was more confused and had a sensation of de javu. He also heard music. The way the seizure presented and where it was located was consistent with AE. This is when they started treating him for AE. He had 5 days of high dose steroids, along with 2 days of IVIG. He improved significantly. He has not had a seizure in over a month. They sent a bunch of samples of blood and CSF to the mayo clinic for autoimmune testing, but all of those have come back negative.
He just followed up the neuroimmunologist who ran more autoimmune labs and those are all negative as well, aside from a mildly elevated anti thyroid peroxidase which the doctor said is often insignificant when it is mildly elevated. She checked his thyroid function just to make sure and those labs were all normal.
The next step is a CT scan to look for tumors. This scares me. With more autoimmune labs coming back negative I can't help but feel like a tumor is more likely. The doctor did tell me that a tumor is very unlikely since he responded so well the steroids and IVIG, but I am still worried.
She also wants to repeat his EEG and MRI in about a month and a half to see if he is still having seizure activity and to check the spots that they saw on his MRI. He is also going to see an neuropsychologist to check for learning/cognitive/sensory disorders. She also told us that there is a chance that he could relapse with AE and now is about the time that that could happen because the IVIG has worn off. We have noticed some increased aggression this last week and its hard to determine if this is a relapse or a side effect of the Keppra. The neuroimmunologist started him on B6 (which is supposed to help with the irritability side effect from Keppra) and Vitamin D. In the mean time, we are on high alert for any other signs that he could be relapsing. He also has a cold right now and is missing even more school.
So there you have his journey in a nutshell. If anyone has some advice or thoughts please share!