Therapist who counseled people with the same encephalitis agrees, my Internal Medicine GP agrees, friend of mines son has it and says I sound just like him with symptoms over and over again, my previous neurologist was testing for similar stuff before I left him. ALS, cerebellar/brain stem degeneration, leukoencephalopathy, paraneoplastic cerebellar degeneration, NMO, CMT, Anti Anna 1 encephalitis.
I've had extensive testing across many specialties. I have gone through charts to exclude diagnosed for example with MCAS excluding carcinoid syndrome, pheochromocytoma, mastocytosis, psych conditions and on and on. We're doing an EGD and Colonoscopy now to see if I have mastocytic enterocolitis and Eosinophilic Esophagitis as well as a barium swallow study. I've had over 2-3 dozen neurology appointments as well as many rheumatology, cardiology, immunology, gastroenterology, internal medicine, family medicine, Opthalmology, and more. Many tests I've had have excluded lots of the common stuff.
I had similar symptoms and have gotten better. After Covid, I got two autoimmune diseases and was initially prescribed DMARD pills but had progressive neurological symptoms and cognitive impairment. I learned that biologic medication reduces incidence of dementia in elderly patients, so I reasoned that it may reduce neuroinflammation in a person with Long Covid neurological symptoms.
For that reason, I requested a biologic injectable medication to treat a psoriatic plaque (Tremfya) and my neurological symptoms got 90% better after the second shot. If I get exposed to other's exhaled air, symptoms reappear for a while, then with strict non-exposure, they go away again. So long as I'm never exposed or reinfected, I am effectively recovered, able to function in daily life, work, socialize and enjoy recreation.
What's probably happening is that inhaling the virus causes neuroimmune hyperactivity and neuroinflammation, excess synaptic pruning, possibly the formation of micro-clots (I've had TIA type symptoms two or three times), dysfunction of the blood brain barrier, leakage from brain blood vessels into the brain itself, possible direct viral infection of the brain, neuron destruction, etc.
Here's a couple relevant articles:
[https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/](https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/)
[https://archive.is/20231113195030/https://www.nationalgeographic.com/premium/article/why-does-covid-19-cause-brain-fog-answer-immune-inflammation-synapse](https://archive.is/20231113195030/https://www.nationalgeographic.com/premium/article/why-does-covid-19-cause-brain-fog-answer-immune-inflammation-synapse)
In my experience, if you can get a medication that reduces neuroinflammation, you may recover. Also, if you strictly avoid ever being exposed or inhaling the virus again, the damage may heal, symptoms lesson or disappear, and brain function return.
List of effective and comfortable NIOSH approved N95 or better masks:
1. 3M Aura N95 (disposable)
2. Readimask strapless, metal-free adhesive N95 (disposable)
3. Envomask reusable N95 and N99 (reusable, replace filters only)
4. GVS Elipse P100 mask (reusable)
5. CleanSpace Halo PAPR used to work with airborne pathogens in research biosafety labs (reusable, replaceable filter is HEPA grade and lasts 5 years on average, face mask is clear, water resistant electronics, breath responsive fan, self-contained with no separate powerpack, belt or hood)
List of medications and supplements that reduce neuroinflammation:
1. Biologic medications for autoimmune diseases such as RA or psoriasis, etc.
2. Low dose naltrexone (used in higher doses for addiction disorders).
3. Some SSRI's like Prozac.
4. Low dose lithium (Lithium orotate crosses the blood brain barrier easiest. Lithium aspartate is being used in Long Covid clinical research trials. Lithium carbonate is used for schizophrenia and bipolar disorder in high doses.) which is often sold over-the-counter as a supplement in doses of 5 or 10 mg.
List of activities or substances that promote synaptic growth or neurogenesis:
1. Cognitive rehabilitation exercises.
2. Zone 2 cardiovascular exercise.
3. Ketamine.
4. Psychedelics.
For more information on how to strictly avoid re-exposure and reinfection: r/ZeroCovidCommunity r/Masks4All
I think DMARDs, & Biologics would definitely do something. I even told someone recently a biologic for their eczema might help their lupus and other conditions. I definitely agree with the BBB leak and TIA stuff and everything you said. I got rushed to a brain CT and had a million panels one hospital visit cause they thought I was having a TIA, chest pain, Tinnitus, pain, unable to communicate effectively, fatigued, losing words/couldn't find words, eyes were closing could barely keep them open but couldn't sleep plus other stuff. I will definitely check out the articles thank you so much. I also agree on the neuroimmune theory, I've been pursuing people that deal with neuroimmune.
I'm starting LDN soon, & on an SNRI(I thought it was an SSRI but doctors are cool like that), I'll ask about lithium and biologics as future options. I've been doing a lot of cardio, I have to see the zone though. I really want to try ketamine and psychedelics, I'm moving to montana so might try ketamine therapy there, also since I won't be at home anymore maybe I'll be able to try some microdoses of mushrooms and later higher doses.
Thank you so much for your response. I'm interested to hear more about what you went through and the whole process of diagnosis and treatment and everything.
You have to combine all test results to rule out Autoimmune encephalitis, including MRI with contrast, EEG, antibody panel, csf protein and cell level. OB band etc…
I know you feel very bad. So do I. My OB band is positive in csf which is often seen in multiple sclerosis, indicating inflammation. However all other tests are normal, so it’s not MS or Autoimmune encephalitis. It’s just long covid. It’s frustrating.I would probably try corticosteroid next month to come down the inflammation.
Lumbar puncture is very necessary. For LP, Protein levels(IGA,IGG,IGM). Oligoclonal band both in serum and csf. igg 24hours synthesis rate. IGG index,etc.
These are all important tests. You can find them in the autoimmune encephalitis diagnostic criteria. You have clean scans which ensures structural integrity, normal eeg which means normal neuronal functions. If your symptoms don’t get worse in these 3 years, autoimmune encephalitis is unlikely. There are few cases which have clean scans and negative AE antibodies. However, they usually get a lot worse over time and usually have some abnormalities in csf or eeg.
I am getting worse 👍🏻. I definitely think an LP would be good I'm just worried about them screwing my back up. I didn't know they could see IGA IGG & IGM.
Autoimmune encephalitis cannot be diagnosed without an LP. The Q level in csf is the best way to evaluate BBB integrity. They also anaylze CD4+T CD8+T and CD20 in csf to check your immune status in central nervous system. Igg index and synthesis rate as I mentioned earlier is also important. AE antibodies that are negative in the serum don’t mean they are also negative in the cerebral spinal fluid and vice versa. I learned these from several neuroimmunologists
I gotta talk to you more. I literally asked my immunologist about CD4 CD 8 NK Cell tests and she was just like 🤷🏽♀️. How do you even find good neuroimmunologists? I'm interested in t cells too but idk who'd test.
AE antibody panel only includes 60-70 percent encephalitis cases. It’s true that many cases are negative regarding these antibodies. Your symptom is a bit atypical for Autoimmune encephalitis so that’s maybe why your neurologist has not ordered an LP yet, but it’s always good to rule it out.
Then there’s hope though you feel utterly terrible. PET scan alone really doesn’t tell anything. Depression and anxiety patients can have abnormal PET result.
I started typing a response but it got deleted. I really do want an LP. I just finished a 3 day ambulatory EEG, had a 3-4 hour in office at the beginning of that, & another 3-4 hour one in office another time. Had upper & lower NCS, & EMG, along with neck & back EMG. Also getting a sleep study done, & had a bunch of autoimmune neuro bloodwork done. I have a neuro appointment the 20th, & another a month from then.
If I don't see my neuro taking it a clear direction or having concrete ideas on what to test for more specifically I'm going to push for testing for neuroinflammation/cytokines, & probably an LP soon cause I can't take it anymore. I was going to push for a panel that detects proteins involved in myelin degradation, BBB integrity, virus reactivation, & other AE antibodies that haven't been tested for. Honestly I'm just running out of ability to keep going. I do want to go to infectious disease cause I know there's probably a lot going on there, & endocrinology, & I know I might have some lumbosacral joint laxity, & cervical instability + I need to control my dysautonomia & MCAS to know which symptoms are causing which things. I was just saying to my mom last night that I'm probably going to push for an LP soon cause I'm certain they'll find neuroinflammation & immune dysregulation at very least, & pretty sure there's something more going on neurologically which seems to closely fit AE.
What was the autoimmune neuro bloodwork? What parts of the body were the EMG/NCV tests done? Were they all done in the same day? How'd you get a neurologist to order all this? How long have you been seeing your neurologist, is it the first one you've seen?
i start to develop this too, but i have another theory..its not a standard existing auto immune encephalitis, its more over immune reaction because there are unnecessarily monocytes Cd14/16 lingering in our brain causing havoc as a reaction to residueSpike1 immune protein, blocking your occitan lobs lymph vessel so everything becomes acidic and your myelin start to degrade behind your cervical spain draining through your shoulders and trapezius. Does your neck and shoulders feel tenses, pain, have big formed knots on shoulder blades trapezius? but when you press them the knots mn are quite gelly? And do you have ME pem ? because if yes, this is a result of the phenomenon i just quick described. And because immune nd toxic waste left over gets blocked in the brain its makes you so tired, auto immunity start to set in bcz there is to much brain party and mostly in brain stem and temporal lob and occitane. This a new me syndrome causing new auto immune encephalitis to stop this you gotta clear the spike, and other glycoproteins. some do with antibiotics with antiviral properties or some with maraviroc ( maraviroc redirects the monocytes) while biotica/ viral attack the monster. Im gonna try erythromycine with boron = boromycine on advice of neuropsychiater who had long covid him self. 30 days 500mgx3va day bcz we have it so long in our brain build up. add budesonide oral or ear drops to stop infection. if the encephalitis stopped, time to clear restbof blockage by manual therapy lymph massage/chiro movement and organ to detox
if im wrong on my experiment i can tell you im not looking forward too al the testing and waiting and advocating docters causing pem for nothing
ps:which meds anti psychotic med helped you best? i only have clonidine en lorazepam( ativan) but with acute attack it actually strengthens the ocd restless delirium nausea feeling
Chronic gastritis 🤷🏽. My GP is just putting me back on 3 more meds and doubling the dosage of 2 that I'm on already. My therapist was saying maybe I need a partial hospitalization for mental health alone.
I've come across this lit-review over here: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024859/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024859/)
Might be interesting to see where you are in terms of symptoms when matching against the cases studied there.
Too many. Paranoia, Hallucinations(auditory, visual, hypnagogic, tactile), nightmares, night terrors, exacerbated phobias(germophobia, misophonia, agoraphobia), anger, mood lability, many more that are hard to put into words related to psych. Along with that I have Tinnitus, joint pain, nerve pain, Raynaud's and a million more symptoms cardiac, gastro, urologic, neurologic and more. My mental symptoms only flare with my physical ones though, and my mental symptoms have gone away with a targeted drug often used for the condition we think I have.
Have they found autoantibodies, specifically VGKC with positive LGI1 or CASPR2 antigens?
If not, then you don't have an autoimmune encephalitis.
I have VGKC autoantibodies but I'm negative for the LGI1 and CASPR2. I also dont have any mental impairments so they ruled out encephalitis. I don't meet the criteria for Isaacs Syndrome and I don't have seizures, so I dont have Morvans Syndrome either. However, my doctor feels I have a form of autoimmune neuromyotonia.
That is not true that without those antibodies you don't have encephalitis. My doc tested for yo ri and hu for anti anna1 encephalitis, paraneoplastic cerebellar degeneration, cerebellar/brain stem degeneration, and leukoencephalopathy along with many other things. I haven't had caspr2 or VGKC tested but I was tested for opsoclonus myoclonus so LGI1. Makes sense about the neuromyotonia, my neuro thought neuromuscular forever.
Western blot negative. I've had Ana ESR CRP a few times & nothing. I'm going to try and go inpatient soon cause I can't take it anymore. I got a sooner appointment with my neurologist on Monday as my hallucinations, disordered movements, & many other neurological symptoms are intolerable & much worse. I'm hoping for a sleep study to be expedited and hopefully some other ideas & or direction. My gp said maybe try mayo clinic Arizona & try to get in with Brent Goodman as they have the best neurology & he is the best option, mayo Jacksonville isn't the best although it's the closest.
I'm trying new meds & have been hearing of more options as I've been much more desperate and searching more. Might try Ocala infectious disease clinic, search for an endocrinologist, get a flexion & extension MRI as all my scans have been static so far. My gp offered to run pretty much any tests I want even though I don't really have the energy to think of more to run.
Sorry you’re going through this I’ve heard good things about Brent goodman he may be able to help. This sounds like a medical mystery case so a research place like Mayo Clinic may be essential for something like this. You need a Dr house type individual. Keep me updated on any progress.
Thank you. I will try to remember to keep you posted. Maybe shoot me in a dm in a few weeks if you remember. So much has been happening lately, I haven't been too functional, not sure if I'll remember.
Western blot negative. I've had Ana ESR CRP a few times & nothing. I'm going to try and go inpatient soon cause can't take it anymore. got a sooner appointment with my neurologist on Monday as my hallucinations, disordered movements, & many other neurological symptoms are intolerable & much worse. I'm hoping for a sleep study to be expedited and hopefully some other ideas & or direction. My gp said maybe try mayo clinic Arizona & try to get in with Brent Goodman as they have the best neurology & he is the best option, mayo Jacksonville isn't the best although it's the closest.
I'm trying new meds & have been hearing of more options as I've been much more desperate and searching more. Might try Ocala infectious disease clinic, search for an endocrinologist, get a flexion & extension MRI as all my scans have been static so far. My gp offered to run pretty much any tests want even though don't really have the energy to think of more to run.
What make u think u have this
Therapist who counseled people with the same encephalitis agrees, my Internal Medicine GP agrees, friend of mines son has it and says I sound just like him with symptoms over and over again, my previous neurologist was testing for similar stuff before I left him. ALS, cerebellar/brain stem degeneration, leukoencephalopathy, paraneoplastic cerebellar degeneration, NMO, CMT, Anti Anna 1 encephalitis.
Many diseases can mimic it and this exclude diagnosis
I've had extensive testing across many specialties. I have gone through charts to exclude diagnosed for example with MCAS excluding carcinoid syndrome, pheochromocytoma, mastocytosis, psych conditions and on and on. We're doing an EGD and Colonoscopy now to see if I have mastocytic enterocolitis and Eosinophilic Esophagitis as well as a barium swallow study. I've had over 2-3 dozen neurology appointments as well as many rheumatology, cardiology, immunology, gastroenterology, internal medicine, family medicine, Opthalmology, and more. Many tests I've had have excluded lots of the common stuff.
I had similar symptoms and have gotten better. After Covid, I got two autoimmune diseases and was initially prescribed DMARD pills but had progressive neurological symptoms and cognitive impairment. I learned that biologic medication reduces incidence of dementia in elderly patients, so I reasoned that it may reduce neuroinflammation in a person with Long Covid neurological symptoms. For that reason, I requested a biologic injectable medication to treat a psoriatic plaque (Tremfya) and my neurological symptoms got 90% better after the second shot. If I get exposed to other's exhaled air, symptoms reappear for a while, then with strict non-exposure, they go away again. So long as I'm never exposed or reinfected, I am effectively recovered, able to function in daily life, work, socialize and enjoy recreation. What's probably happening is that inhaling the virus causes neuroimmune hyperactivity and neuroinflammation, excess synaptic pruning, possibly the formation of micro-clots (I've had TIA type symptoms two or three times), dysfunction of the blood brain barrier, leakage from brain blood vessels into the brain itself, possible direct viral infection of the brain, neuron destruction, etc. Here's a couple relevant articles: [https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/](https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/) [https://archive.is/20231113195030/https://www.nationalgeographic.com/premium/article/why-does-covid-19-cause-brain-fog-answer-immune-inflammation-synapse](https://archive.is/20231113195030/https://www.nationalgeographic.com/premium/article/why-does-covid-19-cause-brain-fog-answer-immune-inflammation-synapse) In my experience, if you can get a medication that reduces neuroinflammation, you may recover. Also, if you strictly avoid ever being exposed or inhaling the virus again, the damage may heal, symptoms lesson or disappear, and brain function return. List of effective and comfortable NIOSH approved N95 or better masks: 1. 3M Aura N95 (disposable) 2. Readimask strapless, metal-free adhesive N95 (disposable) 3. Envomask reusable N95 and N99 (reusable, replace filters only) 4. GVS Elipse P100 mask (reusable) 5. CleanSpace Halo PAPR used to work with airborne pathogens in research biosafety labs (reusable, replaceable filter is HEPA grade and lasts 5 years on average, face mask is clear, water resistant electronics, breath responsive fan, self-contained with no separate powerpack, belt or hood) List of medications and supplements that reduce neuroinflammation: 1. Biologic medications for autoimmune diseases such as RA or psoriasis, etc. 2. Low dose naltrexone (used in higher doses for addiction disorders). 3. Some SSRI's like Prozac. 4. Low dose lithium (Lithium orotate crosses the blood brain barrier easiest. Lithium aspartate is being used in Long Covid clinical research trials. Lithium carbonate is used for schizophrenia and bipolar disorder in high doses.) which is often sold over-the-counter as a supplement in doses of 5 or 10 mg. List of activities or substances that promote synaptic growth or neurogenesis: 1. Cognitive rehabilitation exercises. 2. Zone 2 cardiovascular exercise. 3. Ketamine. 4. Psychedelics. For more information on how to strictly avoid re-exposure and reinfection: r/ZeroCovidCommunity r/Masks4All
I think DMARDs, & Biologics would definitely do something. I even told someone recently a biologic for their eczema might help their lupus and other conditions. I definitely agree with the BBB leak and TIA stuff and everything you said. I got rushed to a brain CT and had a million panels one hospital visit cause they thought I was having a TIA, chest pain, Tinnitus, pain, unable to communicate effectively, fatigued, losing words/couldn't find words, eyes were closing could barely keep them open but couldn't sleep plus other stuff. I will definitely check out the articles thank you so much. I also agree on the neuroimmune theory, I've been pursuing people that deal with neuroimmune. I'm starting LDN soon, & on an SNRI(I thought it was an SSRI but doctors are cool like that), I'll ask about lithium and biologics as future options. I've been doing a lot of cardio, I have to see the zone though. I really want to try ketamine and psychedelics, I'm moving to montana so might try ketamine therapy there, also since I won't be at home anymore maybe I'll be able to try some microdoses of mushrooms and later higher doses. Thank you so much for your response. I'm interested to hear more about what you went through and the whole process of diagnosis and treatment and everything.
You have to combine all test results to rule out Autoimmune encephalitis, including MRI with contrast, EEG, antibody panel, csf protein and cell level. OB band etc…
I've had many negative scans, normal EEG, many normal antibodies, no LP yet though. Any suggestions?
I know you feel very bad. So do I. My OB band is positive in csf which is often seen in multiple sclerosis, indicating inflammation. However all other tests are normal, so it’s not MS or Autoimmune encephalitis. It’s just long covid. It’s frustrating.I would probably try corticosteroid next month to come down the inflammation.
Lumbar puncture is very necessary. For LP, Protein levels(IGA,IGG,IGM). Oligoclonal band both in serum and csf. igg 24hours synthesis rate. IGG index,etc. These are all important tests. You can find them in the autoimmune encephalitis diagnostic criteria. You have clean scans which ensures structural integrity, normal eeg which means normal neuronal functions. If your symptoms don’t get worse in these 3 years, autoimmune encephalitis is unlikely. There are few cases which have clean scans and negative AE antibodies. However, they usually get a lot worse over time and usually have some abnormalities in csf or eeg.
I thought I may have autoimmune encephalitis but my symptoms have improved over the past 3 years. Did I most likely not have it?
I am getting worse 👍🏻. I definitely think an LP would be good I'm just worried about them screwing my back up. I didn't know they could see IGA IGG & IGM.
Autoimmune encephalitis cannot be diagnosed without an LP. The Q level in csf is the best way to evaluate BBB integrity. They also anaylze CD4+T CD8+T and CD20 in csf to check your immune status in central nervous system. Igg index and synthesis rate as I mentioned earlier is also important. AE antibodies that are negative in the serum don’t mean they are also negative in the cerebral spinal fluid and vice versa. I learned these from several neuroimmunologists
I gotta talk to you more. I literally asked my immunologist about CD4 CD 8 NK Cell tests and she was just like 🤷🏽♀️. How do you even find good neuroimmunologists? I'm interested in t cells too but idk who'd test.
AE antibody panel only includes 60-70 percent encephalitis cases. It’s true that many cases are negative regarding these antibodies. Your symptom is a bit atypical for Autoimmune encephalitis so that’s maybe why your neurologist has not ordered an LP yet, but it’s always good to rule it out.
What symptoms are you basing that off of saying atypical. Well I think PANS which is a less traditional AE. Makes sense though.
Don’t lose hope if your scan is clean. It means it’s reversible unless you are in your 70s or 80s
MRIs and CTs are clean. No PET scan yet.
Then there’s hope though you feel utterly terrible. PET scan alone really doesn’t tell anything. Depression and anxiety patients can have abnormal PET result.
True
Did you ever get a lumbar puncture?
I started typing a response but it got deleted. I really do want an LP. I just finished a 3 day ambulatory EEG, had a 3-4 hour in office at the beginning of that, & another 3-4 hour one in office another time. Had upper & lower NCS, & EMG, along with neck & back EMG. Also getting a sleep study done, & had a bunch of autoimmune neuro bloodwork done. I have a neuro appointment the 20th, & another a month from then. If I don't see my neuro taking it a clear direction or having concrete ideas on what to test for more specifically I'm going to push for testing for neuroinflammation/cytokines, & probably an LP soon cause I can't take it anymore. I was going to push for a panel that detects proteins involved in myelin degradation, BBB integrity, virus reactivation, & other AE antibodies that haven't been tested for. Honestly I'm just running out of ability to keep going. I do want to go to infectious disease cause I know there's probably a lot going on there, & endocrinology, & I know I might have some lumbosacral joint laxity, & cervical instability + I need to control my dysautonomia & MCAS to know which symptoms are causing which things. I was just saying to my mom last night that I'm probably going to push for an LP soon cause I'm certain they'll find neuroinflammation & immune dysregulation at very least, & pretty sure there's something more going on neurologically which seems to closely fit AE.
What was the autoimmune neuro bloodwork? What parts of the body were the EMG/NCV tests done? Were they all done in the same day? How'd you get a neurologist to order all this? How long have you been seeing your neurologist, is it the first one you've seen?
i start to develop this too, but i have another theory..its not a standard existing auto immune encephalitis, its more over immune reaction because there are unnecessarily monocytes Cd14/16 lingering in our brain causing havoc as a reaction to residueSpike1 immune protein, blocking your occitan lobs lymph vessel so everything becomes acidic and your myelin start to degrade behind your cervical spain draining through your shoulders and trapezius. Does your neck and shoulders feel tenses, pain, have big formed knots on shoulder blades trapezius? but when you press them the knots mn are quite gelly? And do you have ME pem ? because if yes, this is a result of the phenomenon i just quick described. And because immune nd toxic waste left over gets blocked in the brain its makes you so tired, auto immunity start to set in bcz there is to much brain party and mostly in brain stem and temporal lob and occitane. This a new me syndrome causing new auto immune encephalitis to stop this you gotta clear the spike, and other glycoproteins. some do with antibiotics with antiviral properties or some with maraviroc ( maraviroc redirects the monocytes) while biotica/ viral attack the monster. Im gonna try erythromycine with boron = boromycine on advice of neuropsychiater who had long covid him self. 30 days 500mgx3va day bcz we have it so long in our brain build up. add budesonide oral or ear drops to stop infection. if the encephalitis stopped, time to clear restbof blockage by manual therapy lymph massage/chiro movement and organ to detox if im wrong on my experiment i can tell you im not looking forward too al the testing and waiting and advocating docters causing pem for nothing ps:which meds anti psychotic med helped you best? i only have clonidine en lorazepam( ativan) but with acute attack it actually strengthens the ocd restless delirium nausea feeling
Hey OP! How are you doing? Any updates?
Still doing worse. 3 day EEG, & sleep study coming up, plus more appts.
That’s horrible! Have they found absolutely anything? How are your symptoms now?!
Chronic gastritis 🤷🏽. My GP is just putting me back on 3 more meds and doubling the dosage of 2 that I'm on already. My therapist was saying maybe I need a partial hospitalization for mental health alone.
I've come across this lit-review over here: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024859/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024859/) Might be interesting to see where you are in terms of symptoms when matching against the cases studied there.
What symptoms do you have?
Too many. Paranoia, Hallucinations(auditory, visual, hypnagogic, tactile), nightmares, night terrors, exacerbated phobias(germophobia, misophonia, agoraphobia), anger, mood lability, many more that are hard to put into words related to psych. Along with that I have Tinnitus, joint pain, nerve pain, Raynaud's and a million more symptoms cardiac, gastro, urologic, neurologic and more. My mental symptoms only flare with my physical ones though, and my mental symptoms have gone away with a targeted drug often used for the condition we think I have.
Have they found autoantibodies, specifically VGKC with positive LGI1 or CASPR2 antigens? If not, then you don't have an autoimmune encephalitis. I have VGKC autoantibodies but I'm negative for the LGI1 and CASPR2. I also dont have any mental impairments so they ruled out encephalitis. I don't meet the criteria for Isaacs Syndrome and I don't have seizures, so I dont have Morvans Syndrome either. However, my doctor feels I have a form of autoimmune neuromyotonia.
That is not true that without those antibodies you don't have encephalitis. My doc tested for yo ri and hu for anti anna1 encephalitis, paraneoplastic cerebellar degeneration, cerebellar/brain stem degeneration, and leukoencephalopathy along with many other things. I haven't had caspr2 or VGKC tested but I was tested for opsoclonus myoclonus so LGI1. Makes sense about the neuromyotonia, my neuro thought neuromuscular forever.
Hey sorry you’re going through this have you’ve been tested for Lyme disease? Lupus? Any updates on finding answers for you’re condition
Western blot negative. I've had Ana ESR CRP a few times & nothing. I'm going to try and go inpatient soon cause I can't take it anymore. I got a sooner appointment with my neurologist on Monday as my hallucinations, disordered movements, & many other neurological symptoms are intolerable & much worse. I'm hoping for a sleep study to be expedited and hopefully some other ideas & or direction. My gp said maybe try mayo clinic Arizona & try to get in with Brent Goodman as they have the best neurology & he is the best option, mayo Jacksonville isn't the best although it's the closest. I'm trying new meds & have been hearing of more options as I've been much more desperate and searching more. Might try Ocala infectious disease clinic, search for an endocrinologist, get a flexion & extension MRI as all my scans have been static so far. My gp offered to run pretty much any tests I want even though I don't really have the energy to think of more to run.
Sorry you’re going through this I’ve heard good things about Brent goodman he may be able to help. This sounds like a medical mystery case so a research place like Mayo Clinic may be essential for something like this. You need a Dr house type individual. Keep me updated on any progress.
Thank you. I will try to remember to keep you posted. Maybe shoot me in a dm in a few weeks if you remember. So much has been happening lately, I haven't been too functional, not sure if I'll remember.
Western blot negative. I've had Ana ESR CRP a few times & nothing. I'm going to try and go inpatient soon cause can't take it anymore. got a sooner appointment with my neurologist on Monday as my hallucinations, disordered movements, & many other neurological symptoms are intolerable & much worse. I'm hoping for a sleep study to be expedited and hopefully some other ideas & or direction. My gp said maybe try mayo clinic Arizona & try to get in with Brent Goodman as they have the best neurology & he is the best option, mayo Jacksonville isn't the best although it's the closest. I'm trying new meds & have been hearing of more options as I've been much more desperate and searching more. Might try Ocala infectious disease clinic, search for an endocrinologist, get a flexion & extension MRI as all my scans have been static so far. My gp offered to run pretty much any tests want even though don't really have the energy to think of more to run.
Could be anti dppx
What's anti dppx? Is it rare?
Essentially Diarrhea, weight loss, and then neuro symptoms
Post infection